KFF Health News

KFF Health News' 'What the Health?': American Health Under Trump — Past, Present, and Future

The Host

Emmarie Huetteman
KFF Health News


@emmarieDC

The Host

Emmarie Huetteman
KFF Health News


@emmarieDC

Emmarie Huetteman, senior editor, oversees a team of Washington reporters, as well as “Bill of the Month” and KFF Health News’ “What the Health?” She previously spent more than a decade reporting on the federal government, most recently covering surprise medical bills, drug pricing reform, and other health policy debates in Washington and on the campaign trail. 

Recent comments from former President Donald Trump and Republican lawmakers preview potential health policy pursuits under a second Trump administration. Trump is yet again eyeing changes to the Affordable Care Act, while key lawmakers want to repeal Medicare drug price negotiations.

Also, this week brought news of the first publicly reported death attributed to delayed care under a state abortion ban. Vice President Kamala Harris said the death shows the consequences of Trump’s actions to block abortion access.

This week’s panelists are Emmarie Huetteman of KFF Health News, Joanne Kenen of Politico and the Johns Hopkins University’s schools of nursing and public health, Tami Luhby of CNN, and Shefali Luthra of The 19th.

Panelists

Joanne Kenen
Johns Hopkins University and Politico


@JoanneKenen


Read Joanne's articles.

Tami Luhby
CNN


@Luhby


Read Tami's stories.

Shefali Luthra
The 19th


@shefalil


Read Shefali's stories.

Among the takeaways from this week’s episode:

  • Sen. JD Vance (R-Ohio), Trump’s running mate, says Trump is interested in loosening ACA rules to make cheaper policies available. While the campaign has said little about what Trump would do or how it would work, the changes could include eliminating protections against higher premiums for those with preexisting conditions. Republicans would also likely let enhanced subsidies for ACA premiums expire.
  • Key Republican lawmakers said this week that they’re interested in repealing the Inflation Reduction Act’s provisions enabling Medicare drug pricing negotiations. Should Trump win, that stance could create intraparty tensions with the former president, who has vowed to “take on Big Pharma.”
  • A state review board in Georgia ruled that the death in 2022 of a 28-year-old mother, after her doctors delayed performing a dilatation and curettage procedure, was preventable. Harris tied the death to Trump’s efforts to overturn Roe v. Wade, which included appointing three Supreme Court justices who voted to eliminate the constitutional right to an abortion.
  • And in health tech news, the FDA has separately green-lighted two new Apple product functions: an Apple Watch feature that assesses the wearer’s risk of sleep apnea, and an AirPods feature that turns the earbuds into hearing aids.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too: 

Emmarie Huetteman: The Washington Post’s “What Warning Labels Could Look Like on Your Favorite Foods,” by Lauren Weber and Rachel Roubein. 

Shefali Luthra: KFF Health News’ “At Catholic Hospitals, a Mission of Charity Runs Up Against High Care Costs for Patients,” by Rachana Pradhan. 

Tami Luhby: Politico Magazine’s “Doctors Are Leaving Conservative States To Learn To Perform Abortions. We Followed One,” by Alice Miranda Ollstein. 

Joanne Kenen: The New York Times’ “This Chatbot Pulls People Away From Conspiracy Theories,” by Teddy Rosenbluth, and The Atlantic’s “When Fact-Checks Backfire,” by Jerusalem Demsas. 

Also mentioned on this week’s podcast:

ProPublica’s “Abortion Bans Have Delayed Emergency Medical Care. In Georgia, Experts Say This Mother’s Death Was Preventable,” by Kavitha Surana.

Click to Open the Transcript

Transcript: American Health Under Trump — Past, Present, and Future

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.] 

Emmarie Huetteman: Hello, and welcome back to “What The Health?” I’m Emmarie Huetteman, a senior editor for KFF Health News and the regular editor on this podcast. I’m filling in for Julie this week, joined by some of the best and smartest health reporters in Washington. We’re taping on Thursday, September 19th, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this. So, here we go. 

We’re joined today, by videoconference, by Tami Luhby of CNN. 

Tami Luhby: Good morning. 

Huetteman: Shefali Luthra of The 19th. 

Shefali Luthra: Hello. 

Huetteman: And Joanne Kenan of Politico and Johns Hopkins University Schools of Nursing and Public Health. 

Joanne Kenan: Hi everybody. 

Huetteman: No interview this week, so let’s get right to the news, shall we? It’s big, it’s popular, and if Donald Trump reclaims the presidency, it could be on the chopping block again. Yes, I’m talking, of course, about the Affordable Care Act. Over the weekend, Senator JD Vance claimed that Trump had “protected Americans” insured under the ACA from “losing their health coverage.” Trump himself made a similar claim during the recent debate, where he also said he has the “concepts of a plan” for health reform. Vance, who is Trump’s running mate, suggested the GOP could loosen regulations to make cheaper policies available. But otherwise, the Trump campaign has not said much about what his administration might change. 

Meanwhile, Vice President Kamala Harris has backed off her own plan to change the ACA. You may remember that when she was running for president in 2019, Harris embraced a “Medicare for All” plan. Now, Harris says she plans to build on the existing health system rather than replace it. So let’s talk about what Trump might do as president. What sort of changes could Trump implement to make policies cheaper, as Vance has suggested? 

Luhby: Well, one of the things that Vance has talked about, when he talks about deregulating the market, giving people more choice of plans, it’s actually separating people, the healthier people and the sicker enrollees, into separate, different risk pools, which is what existed before the ACA. And that may be, actually, better for the healthy people. That might lower their premiums. But it would cause a lot of problems for sicker enrollees, those with chronic health conditions or serious illnesses, because they would see their premium skyrocket. And this is one of the reasons why health care was so unaffordable for many people prior to the ACA. So Vance says that he wants to protect people with preexisting conditions. That’s what everyone says. It’s a very popular and well-known provision of the ACA. But by separating people into different risk pools, it would actually hurt people with preexisting conditions, because it may make their health insurance unaffordable. 

Kenan: The difference between pre-ACA and post-ACA is it might actually even be as bad or possibly worse for people with preexisting conditions. Right now, everybody’s in one unified risk pool, right? Whether you’re sick or healthy, your costs, more or less, get averaged out, and that’s how premiums are calculated. Before ACA, people with preexisting conditions just couldn’t get covered necessarily, or if they got covered, it was sky-high, the premiums. By doing what Tami just described, the people, presumably, in the riskiest pool, the sickest people, the insurers would have to offer them coverage. They couldn’t say, “No, you’re sick, you can’t have it,” because there’s guaranteed coverage. But it would be sky-high. So it would be de facto no insurance for most of those people unless the government were to subsidize them to a really high extent, which I didn’t hear JD Vance mention the other day. 

Luthra: Right. 

Luhby: And one of the other things that they talked about, more choice. I mean, one of the issues that a lot of people complained about in the ACA, early on, was that they didn’t want substance abuse coverage. There’s 10 health-essential benefits which every insurer has to cover — pregnancy, maternal care, et cetera. And 60-year-old men or even 60-year-old women said: Why am I paying for this? This is making my plan more expensive. But again, as Joanne said, it’s evening out the costs among everyone so that it’s making health care more affordable for everyone. And if you allow people to start picking and choosing what benefits they want covered, it’s going to make the plans more expensive for those who need the higher-cost care. 

Luthra: Tami alluded to something that is really important, which is that these conditions we’re talking about are very common. A lot of people get pregnant, for example. A lot of people have chronic health conditions. We are not the healthiest country in the world. And so when you think about who would be affected by this, it’s quite a large number of Americans who would no longer be able to get affordable health coverage and a small group of people who probably would. Because, I mean, one thing that’s worth noting —right? — is even if you are healthy for a time, that’s a transient state. And you can be healthy when you are young and get older and suddenly have knee problems, and then things look very different. 

Huetteman: It seems like if they use the exact words, “preexisting-condition protections,” and said they were trying to roll them back in order to make policies cheaper, that might be just a bad political move all around. Preexisting-condition protections are pretty popular, right? 

Luhby: Yes, they certainly are. But that’s why they’re saying they’re going to continue it. But what’s also popular is choice. And that’s been one of the knocks against the Affordable Care Act, is that, while there are a lot of plans out there, they do have to conform to certain requirements, and therefore that gives people less choice. I mean, and remember, one of the things that we started by talking about, what a second Trump administration might look like for health care. One of the things the first Trump administration did is loosen the rules on short-term plans, which don’t have to conform to the ACA. And prior, they were available for a short time as a bridge between policies, but the Trump administration lengthened them to up to three years. And the goal of the Trump administration was that people would have more choice. They could pick skinnier plans that they felt would cover them. But they didn’t always realize that if they got into a car accident, if they were diagnosed with cancer, if something bad happened, they did not have all of the protections that ACA plans have. 

Huetteman: Joanne, you have something to add. 

Kenan: So the first thing is that they spent years and a lot of political capital trying and failing to repeal the ACA or to make major changes in the ACA. The reason it failed is because even then, when the ACA was sort of quasi-popular and there was a lot of controversy still, the preexisting-condition part was extremely popular. Since then, the ACA has become even more popular. What [former President Barack] Obama said when he was speaking to the Democratic National Committee convention the other night — remember that aside where he said, Hey, they don’t call it Obamacare anymore now that it’s popular. It is popular. You’ve even had Republican senators going on record saying it’s here to stay. 

So major overhaul of it is, politically, not going to be popular. Plus, the Republicans, even if they capture the Senate, which is what most of the prognosticators are saying right now, it would be a small majority. If the Republicans have 51, 52, none of us know exactly what’s going to happen, because we’re in a rather rapidly changing political environment. But say the Republicans capture the Senate and say Trump is in the White House. They’re not going to have 60 votes. They’re not going to have anywhere near 60 votes. I’m not even sure if there was a way to do this under reconciliation, which would require 51. I’m not sure they have 51 votes. So and then if they do it through some kind of regulatory approach — which I think is harder to do, something this massive, but people find a way — then it ends up in court. 

So I think it’s politically unfeasible, and I think it’s practically unfeasible. I think there are smaller things they could do to weaken it. I mean, they did last time, and coverage dropped under Trump, last time. I mean, they could not promote it. They could not market it. They could not have navigators helping people. There’s lots of things they could do to shrink it and damage it, but there’s a difference between denting something and having a frontal collision. And we’ve all seen Vance have to roll back other things that he’s predicted Trump would do, so this is very TBD. 

Huetteman: One of the bigger issues with the ACA going into next year is these enhanced subsidies that Joe Biden implemented under the pandemic, that helped a lot of people pay for their premiums, will expire at the end of 2025. And depending on which party has control after this election, that could decide the fate of the subsidies. Joanne, you had something to add on this. 

Kenan: That’s the big vulnerability. And it’s not so much, are they going to repeal it or define their concept of a plan? I mean, the subsidies are vulnerable because they expire without action, and they’re part of a larger debate that’s going to happen no matter who wins the presidency and no matter who wins Congress. It’s that a lot of the tax cuts expire in 2025. The subsidies are part of that tax, but many aspects of the tax bill are going to be a huge issue no matter who’s in charge. 

The subsidies are vulnerable, right? Republicans think that they went too high. Basically those subsidies let more middle-class people with a higher income get ACA subsidies, so insurance is more affordable. And quite a few million people — Tami might remember how many, because I don’t — are getting subsidized this way. It’s not free. They don’t get the biggest subsidies as somebody who’s lower-income, but they are getting enough subsidies that we saw ACA enrollment go up. That is where the big political battle over the ACA is inevitable. I mean, that is going to happen no matter what else happens around aspects of repealing or redesigning or anything else. This is inevitable. They expire unless there’s action. There will be a fight. 

Luhby: Yeah, these— 

Kenan: And I don’t know how it’ll turn out, right? 

Luhby: These subsidies were created as part of the American Rescue Plan in 2021 and were extended for two years as part of the Inflation Reduction Act, which the Republicans don’t like. And they have, as Joanne said, they’ve allowed more middle-class people to come in, and also, they’re more generous subsidies than in the past. Plus they’ve made policies free for a lot of lower-income people. Folks can get these policies without premiums. So enrollment has skyrocketed, in large part because of these subsidies. Now there are more than 20 million people enrolled. It’s a record. So the Biden administration would like to keep that intact, especially if Harris wins the presidency. But it will be a big fight in Congress next year, as part of the overall Tax Cuts and Jobs Act negotiations, and we’ll see what the Democrats might have to give up in order to retain the subsidies. The— 

Kenan: It’s going to be, yeah. 

Luhby: Enhanced subsidies. 

Kenan: There are deals to be had with tax cuts versus subsidies, because these are large, sprawling bills with many moving parts. But it’s way too early to know if Republicans are willing to deal on this and what a deal would look like. We’re nowhere near there. But yeah, if you talk about ACA battles in 2025, that’s number one. 

Huetteman: Well, speaking of health policies that are on the GOP agenda, some high-ranking Republican lawmakers are saying they want to repeal the Inflation Reduction Act if the party wins big in November, particularly the part that enables Medicare drug negotiations. You may recall their objections from when Congress passed the law two years ago. Republicans argue the negotiations harm innovation and amount to government price controls. But on the other hand, drug prices are an issue where Trump kind of sort of agrees with Democrats. He has promised to “take on Big Pharma.” Does this mean we could see a Republican Congress fighting with Trump over drug price negotiations? 

Luhby: Well, he did have a lot of executive orders and a lot of efforts that were very un-Republican-like. One was called Most Favored Nation. He didn’t say that we should do negotiations. We were just going to piggyback on the negotiations done in other countries and get their lower prices. He didn’t really get very far in a lot of those measures, so it didn’t come to a fight with the Republican Congress. But he may leave the negotiation process alone, the next set of drugs, that’ll be 15 drugs, that, we’ll find out next year, that will be negotiated. So he could leave that alone. If he tries to expand it, yeah, he may have some problems with the Republican Congress. But as we’ve also seen, a Republican Congress has acquiesced to his demands in the past. 

Huetteman: And Congress certainly has no shortage of battles teed up for 2025, of course. Speaking of, here we are again. Yesterday, in the House of Representatives, Democrats and Republicans joined together to defeat a stopgap spending bill that would’ve kept the government open. To be sure they didn’t have the same objections, Democrats opposed a Republican amendment that would impose new voter registration requirements about proving citizenship. And hard-right Republicans objected to the size of the temporary spending bill, $1.6 trillion. Trump weighed in on social media, calling on Republicans to oppose any government spending bill at all, unless it comes with a citizenship measure. 

Now, Senate Republican leaders, in particular, are not thrilled about this. Here are the words of [Senate minority Leader] Mitch McConnell, who said it better than I can: “It would be politically beyond stupid for us to do that right before the election, because certainly, we’d get the blame” for that government shutdown. What happens now? 

Kenan: Last-minute agreement, like, I feel. I used to cover the Hill full time. I no longer do, but it was, like, late nights standing in the hallway for a last-minute reprieve. At some point, they’re going to probably keep the government open, but with Trump’s demands and the citizenship proof of a life for voters and all that, it’s going to be really messy. Mike Johnson became speaker after a whole bunch of other speakers failed to keep the government open. 

Huetteman: That’s right. 

Kenan: Probation spell, we went through chaos, he has a small majority. He survived because the Democrats intervened on his behalf once, because of Ukraine. We have no idea the dynamics of — do the Democrats want to see complete chaos so the Republicans get blamed? Who knows? I don’t think it’s going to be a handshake tomorrow and Let’s do a deal. What they usually do is continue current spending levels and what they call a continuing resolution. So you keep status quo for one month, two months, three months, sometimes 10 months. The odds are, the government will stay open at some kind of a last-minute patchwork deal that nobody particularly likes, but that’s likely. I wouldn’t say that certain. Republicans have backed off shutting the government down for a while now, a couple of years. 

Huetteman: It’s worth noting, though, that even this bill that they just voted down would’ve only kicked the can down to March. So we are still talking about something that the new Congress would have to deal with pretty quickly, even if we can get something done short-term. But we’ve got a lot of news today. So moving on to reproductive health news. 

This week, Senate Republicans, again, blocked a bill that would’ve guaranteed access to in vitro fertilization nationwide. That federal bill would, of course, have overridden state laws that restrict access to the procedure. You may recall that Republicans also blocked that bill earlier this summer, describing it as a political show vote. And indeed, Democrats are trying to get Republicans on the record, opposing IVF, in order to draw contrast with the GOP before voters go to the polls. What do we think? Did Democrats succeed here in showing voters their lawmakers really think about IVF? 

Luthra: I mean, realistically, yes, I think this is a very effective strategy for Democrats. If they could talk about abortion and IVF every day, all day, they would. We can look at Taylor Swift’s endorsement of Kamala Harris and [Minnesota Gov.] Tim Walz. She specifically mentions reproductive rights, and she mentions IVF in particular, noting that she thinks that these are the candidates who will support access to that fertility regimen. IVF is very popular, and it is obviously going to be a major battle, because it is the next frontier for the anti-abortion movement, and the Republican Party is allied very closely to this movement. Even if there have been more fractures emerging lately, I just don’t see how Republicans can find a way to make this a political winner for them, unless they figure out a way to change their tune, at least temporarily, without alienating that ally they have. 

Huetteman: Absolutely. And meanwhile, speaking of the consequences of these actions on abortion lately, this week we learned of the first publicly reported death from delayed care under a state abortion ban. ProPublica reported the heart-wrenching story of a 28-year-old mother in Georgia who died in 2022 after her doctors held off on performing a D&C [dilation and curettage procedure]. Performing a D&C in Georgia is a felony, with a few exceptions. Sorry, this is difficult to talk about, especially if you or someone you know has needed a D&C, and that may be a lot of us, whether we know it or not. 

Her name was Amber Thurman. Amber needed the D&C because she was suffering from a rare complication after taking the abortion pill. She developed a serious infection, and she died on the operating table. Georgia’s Maternal Mortality Review Committee determined that Amber Thurman’s death was preventable. ProPublica says at least one other woman has died from being unable to access illegal abortions and timely medical care. And as the story said, “There are almost certainly others.” On Tuesday, Vice President Harris said Amber’s death shows the consequences of Trump’s actions to block abortion access. How does this affect the national conversation about abortion? Does it change anything? 

Luthra: I mean, it should, and I don’t think it’s that simple. And it’s tough, because, I mean, these stories are incredible pieces of journalism, and what they show us are that two women are dead because of abortion bans — and that there are almost certainly many more, because these deaths were in 2022, very soon after the Dobbs decision. And what has been really striking, at the same time, is that the anti-abortion movement has very clear talking points on these deaths. And they’re doing what we have seen them do, in so many cases, where women have almost lost their lives, and now, in these cases where they have, which is they blame the doctors. And they have been going out of their way to argue that, actually, the exceptions that exist in these laws are very clear, even though doctor after doctor will tell you they are not, and that it is the doctor’s fault for not providing care when there is very obviously an exception. 

They are also arguing that this is further proof that medication abortion, which is responsible for the vast majority of abortions in this country, is unsafe, even though, as you noted and as these stories noted, the complications these women experienced are very rare and could be addressed and treated for and do not have to be fatal if you have access to health care and doctors who are not handcuffed by your state’s abortion laws. And so what I think happens then is this is something that should matter and that should change our conversation. And there are people talking about this and making clear that this is because of the reproductive health world that we live in, but I don’t think it will necessarily change the course of where we are headed, despite the fact that what abortion opponents are saying is not true and despite the fact that these abortion bans remain very unpopular. 

Kenan: I think you can, and she said it really well, but I think in terms of, does it change minds? Think about the two bumper stickers, right? One is “Abortion bans kill,” and the other one is “The abortion pill kills.” And both of these women had medication abortions. Those side effects are very, very, very unusual, that dangerous side effects, are extremely unusual. There’s years of data, there’s like no drug on Earth that is a hundred percent, a thousand percent, a hundred thousand percent safe. So these were tragedies in which the women did develop severe life-threatening side effects, didn’t get the proper treatment. But think about your bumper stickers. I don’t think this changes a lot of minds. 

Huetteman: All right. Well, unfortunately we will keep watching for this and more news on this subject. But in state news, Nevada will become the 18th state to use its Medicaid funds to cover abortions after a recent court ruling. While federal funds are generally barred from paying for abortions, states do have more flexibility to use their own Medicaid funds to cover the procedure. And, North Dakota’s abortion ban has been overturned, after a judge ruled that the state’s constitution protects a woman’s right to an abortion until the fetus is viable. But there’s a bigger challenge: The state has no abortion clinics left. We’ve talked a lot on this podcast about how overturning Roe has effectively created new, largely geographical classes of haves and have-nots, people who can access abortion care and people who can’t. It seems like the lesson out of North Dakota right now is that evening that playing field isn’t as simple as changing the law, yes? 

Luthra: Absolutely. And this is something that we have seen even before Roe was overturned. I mean, an example that I think about a lot is Texas, which had had this very big abortion law passed in 2013, and it was litigated in the courts, was in and out of effect before it went to the Supreme Court and was largely struck down. But clinics closed in the meantime. And what that tells us is that when clinics close, they largely don’t reopen. It is very, very hard to open an abortion clinic. It is expensive. It can be dangerous because of harassment. You need to find providers. You need to build up a medical infrastructure that doesn’t exist. And we are seeing several states with ballot measures to try to undo abortion bans in their states — Florida, Missouri, Nebraska with their 12-week ban. We are seeing efforts across the country to try and restore access to these states. 

But the question is exactly what you pointed out, which is there is a right in name and there is a right in practice. And for all the difficulties of creating a right in name, creating a right in practice is even harder. And there is just so much more that we will need to be following as journalists, and also as people who consume health care, to fully see what it takes for people to be able to get reproductive health care, including abortion, after they have lost it. 

Huetteman: All right. And with fewer than 50 days left until Election Day and way fewer before early voting begins, a court in Nebraska has ruled that competing abortion rights measures can appear on the ballot there this fall. Two measures, one that would expand access and one that would restrict it, qualified for the ballot. Nebraska will be the first state to ask residents to vote on two opposing abortion ballot measures. Currently, the state bans abortion in most cases, starting at 12 weeks. There are at least nine other states with ballot measures to protect abortion rights this fall, but this one’s pretty unusual. What do we think? Will this be confusing to Nebraska voters? 

Luthra: I mean, I imagine if I were a voter, I would be confused. Most people don’t follow the ins and outs of what’s on their ballot until you get close to Election Day and you are bombarded with advertisements. And I think this is really striking, because it is just part of, I guess, maybe not long, because this only happened two years ago, but part of a repeated pattern of abortion opponents trying to find different ways to get around the fact that ballot measures restoring abortion rights or protecting abortion rights largely win. And so how do you find a way around that? You can try and create confusion. You can try and raise the threshold for approval like they tried and failed to do in Ohio. You can, maybe in Nebraska this is more effective, put multiple measures on the ballot. You can try, as they tried and failed to do in Missouri, try and stop something from appearing on the ballot. 

And I think this is just something that we need to watch and see. Is this the thing that finally sticks? Does this finally undercut efforts to use direct voting to restore abortion rights? Which we should also note is a strategy with an expiration date of sorts, because not every state allows for this direct democracy approach. And we’re actually hitting the end of the list of states very soon where this is a viable strategy. 

Huetteman: And as we know, every state where a ballot measure has addressed this issue since Roe was overturned has fallen on the side of abortion rights, ultimately. It’ll be curious to see what happens here, where voters have both choices right before them. 

Well, let’s wrap up with tech news this week. Are you wearing an Apple Watch right now? Or maybe you’re listening to us on AirPods? Well, that watch could soon tell you if you might have sleep apnea. Or, if you have trouble hearing, those earbuds could soon help you hear better. The FDA has given separate green lights to two new Apple product functions. One is an Apple Watch change that assesses the wearer’s risk of sleep apnea. And the FDA also authorized Apple AirPods as the first over-the-counter hearing-aid software, to assist those with mild to moderate hearing loss. Hearing aids can be pretty expensive, and some resist wearing them due to stigma or stubbornness. What does this mean for people with these conditions, and also about the possibilities for health tech? 

Kenan: I mean, none of us are covering the FDA’s tech division full time or even much at all. So basically there’s been a trend toward sort of overlap with consumer and health products. Many of us have something on our wrists or something in our phone that is monitoring something or other, and there’s been some controversy about how accurate some of them are. My understanding with the sleep apnea thing, that it doesn’t actually diagnose it. It tracks your sleep patterns, and if it sees some red flags, it says: You might have sleep apnea. You should go see a doctor. That’s what I think that does. 

Huetteman: That’s right. 

Kenan: You’re asleep when you’re having sleep apnea. You don’t necessarily know what’s happening. So it’s arguably a useful thing that you have kind of an alert system. The hearing aids, it’s not just these. The FDA, a few months ago, authorized more over-the-counter hearing aids of various types, which have made them much cheaper and much more accessible. This is an advance, another category, another type to have people wearing earbuds anyway. I know people who have the over-the-counter hearing aids, and they are small and cheap, so that industry has really been disrupted by tech. So we are seeing not necessarily some of the sky-in-the-pie promises of health and tech from a few years ago but some useful things for consumers to either make things more accessible or affordable, like the earbuds — although I would lose them — or just a useful tool or a potentially useful tool, I don’t know how great the data is, saying ask your doctor about this. Sleep apnea is dangerous. 

So my mom is about to turn 90, and we have a fall monitor on her watch that we actually pay for, an extra service, that they alert emergency. I was with her once when she fell. They called her and said, Are you okay? And she said, Yes, my daughter’s here and et cetera. Except, at 90, she still plays pingpong, doubles pingpong, not a lot of movement for 90 year olds, and it does get the fall monitor very confused. I think it’s been trained. So yeah, I mean, it’s not that expensive, and it’s great peace of mind. People would much rather have it on their watch, because young cool people wear smartwatches, than those buttons around their neck. I would’ve never gotten my mother to wear a button around her neck. So it’s part of a larger trend of tech becoming a health tool, and it’s not a panacea, but the affordability for over-the-counter hearing aids is a big deal. 

Huetteman: Right, right. This is expanded access. If you’ve got this consumer product already in your pocket, on your wrist, in your ears, why not have it help with your health? We’ve already kind of adjusted, in many ways, to health tech. We had Fitbits. We’ve had things that have tracked our heart rates and that sort of thing, or even our phones can do that at this point. But hearing aids, in many cases for people who have mild or moderate hearing loss, they don’t even go for a hearing aid, because they don’t want to be stigmatized as being maybe a little older and being unable to hear, even if they might just muddle through. But if you’ve already got those AirPods in, because you’re going to take a call later, I mean, that’s pretty below the radar. You don’t have to feel too self-conscious about that one, so … 

Kenan: Yeah, my mom would look cool, but she actually doesn’t need them, so that’s OK. 

Huetteman: If she’s playing pingpong at her age, she already looks cool. 

Kenan: She plays pingpong very slowly. I hope I’m doing the equivalent when I’m 90. I hope I’m 90, you know? 

Huetteman: Hear, hear. 

Kenan: You know. 

Huetteman: OK, that’s this week’s news. Now it’s time for our extra credit segment. That’s when we each recommend a story we read this week that we think you should read, too. As always, don’t worry if you miss it. We’ll post the links in the podcast page at kffhealthnews.org and in our show notes, on your phone or other mobile device. Shefali, why don’t you go first this week? 

Luthra: All right. My story is from KFF Health News by the great Rachana Pradhan. The headline is, “At Catholic Hospitals, a Mission of Charity Runs Up Against High Care Costs for Patients.” The story is one of my favorite genres of stories, which is stories about how everyone loves their hospital and their hospital is a business. And Rachana does a great job looking at the history of Catholic hospitals and the extent to which they were founded as these beacons of charitable care meant to improve the community. But actually, when you look at where Catholic hospitals are now — and Catholic hospitals have really proliferated in the past several years — they look a lot like businesses and a lot less like charities. There’s some fascinating patient stories and also analyses in here, showing that Catholic hospitals are less likely than other nonprofit hospitals to treat Medicaid patients. They are great at going after patients for unpaid medical bills, including suing them, garnishing wages, reporting them to credit bureaus. It’s really great. It’s the exact kind of journalism that I think we need more of, and I love this story, and I hope others do, too. 

Huetteman: Excellent. It is a great piece of journalism. We hope everyone will take some time to read it. Tami, why don’t you go? 

Luhby: OK. My extra credit is an in-depth piece by one of our very own, Alice Miranda Ollstein of Politico, and it’s titled, “Doctors Are Leaving Conservative States to Perform Abortions. We Followed One.” So Alice followed a doctor who spent a month in Delaware learning how to perform abortions, because she couldn’t obtain that training in her home state, across the country. Alice notes that Politico granted the doctor anonymity due to her fear of professional repercussions and the threat of physical violence for seeking abortion training, which is concerning to hear. While many stories have written about states’ abortion bans, Alice’s piece provides a different perspective. She writes about the lengths the doctors must go to obtain training in the procedure and the negative effects that the overturning of Roe has had on medical education. 

The doctor she profiled spent nearly two years searching for a position where she could obtain this training, before landing at Delaware’s Planned Parenthood. It cost nearly $8,000. The doctor had to pull together grants and scholarships in order to cover the costs. Alice walked readers through the doctor’s training in both surgical and medical abortions and through her ethical and medical thoughts after seeing — and this is one thing that stuck with me in the story — what’s called the “products of conception” on a little tray. So the story is very moving, and it’s well worth your time. 

Huetteman: Absolutely. And the more detail we can get about what these sorts of procedures and this training looks like for doctors, the better we understand what we’re actually talking about when we’re talking about these abortion bans and other restrictions on reproductive health. Joanne, why don’t you talk to us about your extra credit this week? 

Luthra: OK. There’s a piece in the New York Times by Teddy Rosenbluth called “This Chatbot Pulls People Away from Conspiracy Theories.” And there’s also a related podcast at the Atlantic called, by Jerusalem Demsas, “When Fact-Checks Backfire.” They’re both about the same piece of research that appeared in Science. Basically, debunking, or fact-checking, has not really worked very well in pulling people away from misinformation and conspiracy theories. There had been some research suggesting that if you try to debunk something, it was the backfire effect, that you actually made it stick more. That doesn’t always happen. There’s sort of some people that it does and some people it doesn’t — that’s beginning to be understood more. 

And what this study, the Times reported on and the Atlantic podcast discussed, is using AI, because we all think that AI is going to be generating more disinformation, but AI is also going to be fighting disinformation. And this is an example of it, where the people in this study had a dialogue, a written, typed-in dialogue, where the chatbot that gave a bespoke response to conspiracy beliefs, including vaccines and other public health things. And that these individually tailored, back-and-forth dialogue, with an AI bot, actually made about 20% of the people, which is, in this field, a lot, drop their or modify their beliefs or drop their conspiracy beliefs. And that it stuck. It wasn’t just because some of these fact-checks work for like a week or two. These, they checked in with people two months later and the changes in their thinking had stuck. So it’s not a solution to disinformation and conspiracy belief, but it is a fairly significant arrow to new techniques and more research to how to debunk it better without a backfire effect. 

Huetteman: That’s great. Thanks for sharing those. All right. My extra credit this week comes from two of our podcast pals at The Washington Post, Lauren Weber and Rachel Roubein. The headline is, “What Warning Labels Could Look Like on Your Favorite Foods.” They report that the FDA is considering labeling food to identify when they have a high saturated fat content, sodium, sugar, those sorts of things that we should all be paying attention to on nutrition labels. But their proposal falls short, critics say. It’s not quite as good, they say, at identifying the health risk factors of certain amounts of sodium and sugar in our food, especially compared to other countries. 

They do an extensive study on Chile’s food labeling, in fact. And if you’re like me and you buy a lot of your groceries for your household and you try to look at the nutrition labels, you might be surprised by some of the items the article identifies as being particularly high in sodium, like Cheerios. Bad news for my family this morning. 

All right, that’s our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left a review. That helps other people find us, too. Special thanks, as always, to our amazing engineer, Francis Ying. And as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you could try tweeting me. I’m lurking on X, @emmarieDC. Shefali. 

Luthra: I’m @shefalil

Huetteman: Joanne. 

Kenan: @JoanneKenen on Twitter, @joanneKenen1 on Threads. 

Huetteman: And Tami. 

Luhby: Best place to find me is cnn.com

Huetteman: We’ll be back in your feed next week. Until then, be healthy. 

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KFF Health News' 'What the Health?': Trump-Harris Debate Showcases Health Policy Differences

The Host

Julie Rovner
KFF Health News


@jrovner


Read Julie's stories.

The Host

Julie Rovner
KFF Health News


@jrovner


Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

As expected, the presidential debate between former President Donald Trump and Vice President Kamala Harris offered few new details of their positions on abortion, the Affordable Care Act, and other critical health issues. But it did underscore for voters dramatic differences between the two candidates.

Meanwhile, the Biden administration issued rules attempting to better enforce mental health parity — the federal government’s requirement that services for mental health care and substance use disorders be covered by insurance to the same extent as other medical services.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs Zhang of Stat, Riley Griffin of Bloomberg News, and Lauren Weber of The Washington Post.

Panelists

Rachel Cohrs Zhang
Stat News


@rachelcohrs


Read Rachel's stories.

Riley Griffin
Bloomberg


@rileyraygriffin


Read Riley's stories.

Lauren Weber
The Washington Post


@LaurenWeberHP


Read Lauren's stories.

Among the takeaways from this week’s episode:

  • Trump declined to say during the debate whether he’d veto legislation implementing a nationwide abortion ban. But he could effectively ban the procedure without Congress passing anything because of the 150-year-old Comstock Act. And Project 2025, a policy blueprint by the conservative Heritage Foundation, calls for doing just that.
  • There is a good chance that enhanced federal subsidies for ACA coverage that were introduced during the pandemic could expire next year, depending on which party controls Congress. The subsidies have helped more people secure zero-premium health coverage through the ACA exchanges, though Republicans say the subsidies cost too much to keep. Residents in states that haven’t expanded Medicaid coverage — including Florida and Texas — would be most affected.
  • The Census Bureau reports that the uninsured rate didn’t change much last year after hitting a record low in the first quarter. But the report’s methodology prevented it from capturing the experiences of many people disenrolled and left uninsured after what’s known as the Medicaid “unwinding” began. Meanwhile, a Treasury Department report sheds light on just how many Americans have benefited from the ACA, as polls show the health law has also grown more popular.
  • And Congress has yet to pass key government spending bills, meaning the nation (again) faces a possible federal government shutdown starting Oct. 1. It remains to be seen what could pass during a lame-duck session after the November elections. In 2020, the end-of-the-year spending package featured many health care priorities — and that could happen again.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: The Wall Street Journal’s “A Nurse Practitioner’s $25,000 in Student-Debt Relief Turned Into a $217,500 Bill From the Government,” by Rebecca Ballhaus.  

Lauren Weber: Stat’s “Youth Vaping Continues Its Tumble From a Juul-Fueled High,” by Lizzy Lawrence.  

Riley Griffin: Bloomberg News’ “Lilly Bulks Up Irish Operations in Obesity Drug Production Push,” by Madison Muller.  

Rachel Cohrs Zhang: ProPublica’s “‘I Don’t Want To Die’: Needing Mental Health Care, He Got Trapped in His Insurer’s Ghost Network,” by Max Blau.

Also mentioned on this week’s podcast:

click to open the transcript

Transcript: Trump-Harris Debate Showcases Health Policy Differences

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Sept. 12, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this, so here we go.

Today we are joined via teleconference by Rachel Cohrs Zhang of Stat News.

Rachel Cohrs Zhang: Hi, everybody.

Rovner: Riley Griffin of Bloomberg News.

Riley Griffin: Hey, hey.

Rovner: And Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: I hope you enjoyed last week’s special episode on health equity from the Texas Tribune Festival. Now we have a lot of news to catch up on, so we will get right to it. We’re going to start with politics and with the much-anticipated presidential debate Tuesday night, obviously the big health issue was abortion. And as I said afterwards on the radio, the most consistent thing about former President Trump’s abortion position is how inconsistent it has been. Did we learn anything new from everything he tried to say about abortion?

Cohrs Zhang: I think he didn’t provide a lot of clarity on the issue of whether he would veto a nationwide abortion ban, and I think that has been the question that is kind of hard to nail down. And his response is that, Well, that’s not going to pass Congress, so I won’t have to worry about it.

Rovner: Which is kind of true. I mean, it’s not going to pass Congress. That was Nikki Haley’s point.

Cohrs Zhang: Yeah, so I think we have seen, though, some talk floating around about ending the filibuster for abortion from [Sen.] Chuck Schumer’s side of things, at least. So I think it’s not completely out of the question to think that things could be different in the future. We don’t entirely know. But that’s his argument that I don’t really have to answer that question, because it’s not actually going to happen. So I think that’s not really an answer to the question.

Rovner: Riley?

Griffin: It does beg the question what he has to gain from answering that question. If he says he supports vetoing a national abortion ban, it’s certain to anger some of his base, and the opposite is true, too. He’s been threading a really tenuous needle here in trying to appease very different crowds within the Republican Party. And I think that is perhaps, at this point, more interesting to think about his positioning around abortion than the Democratic Party’s.

Rovner: So this is where I get to jump up and down and say for the millionth time: He doesn’t have to sign a nationwide ban to ban abortion nationwide. This is where the Comstock Act comes in that we have talked about so many times and that Project 2025 talks about starting to enforce it, which it has not been in decades and decades, but it is still on the books. And a lot of people say, oh, they could ban the abortion pill by enforcing the Comstock Act, which bans the mailing of things that can be used for abortion. But as others point out, it could be not just the abortion pill. Anything that is used to perform any sort of abortion travels in the mail or FedEx or UPS, all of which are covered by the Comstock Act. So in fact, he could support a nationwide abortion ban and still say that he would veto legislation calling for a nationwide abortion ban.

Cohrs Zhang: Right. And it seems like when he’s been questioned about this in the past, he hasn’t quite understood or seems like he understands the nuances of that. And I think our frequent panelist Alice Ollstein had some good reporting indicating that the pro-life groups wanted more commitments from him on the Comstock Act and aren’t getting them. So I think there are certainly some questions out there. But as a reporter in D.C., we have the privilege of covering health care almost exclusively, and sometimes you can tell when a lawmaker or a public official doesn’t understand the question, and I think that’s a little bit of what’s happening here. But obviously it’s his campaign’s job to prep him and make clear what his position is so voters can make an informed decision.

Rovner: And, of course, with Trump, you’re never sure whether he really doesn’t understand it or whether he’s purposely pretending that he doesn’t understand it.

Cohrs Zhang: Right, right.

Rovner: Lauren, you wanted to add something?

Weber: On a lot of issues, Trump doesn’t necessarily always give a straight answer and often walks them back. So it’s somewhat representative of also playing, as Riley pointed out, to political points as we get so very close to the election and to pick up some of the folks that are undecided. So as you said, we didn’t learn much.

Rovner: So what about Vice President [Kamala] Harris? Those of us sitting here and those of us who listen to the podcast know that she’s been on the trail talking about reproductive health since before the fall of Roe. It’s an issue that she is super comfortable with. I was, I think, surprised at how surprised people watching were when she was able to articulate a really thorough answer. Did that surprise any of you?

Weber: That did not surprise me at all. But I think what was so shocking about it was everyone remembers where they were when Joe Biden got the abortion question at the debate, not so long ago, and truly butchered that answer. That was one of the worst moments of the debate for him. He really could not get through it. The man has notoriously not felt comfortable talking about abortion — older man, Catholic, et cetera. But the contrast, I think, is what was so surprising, because Democrats consider this very much an essential issue for winning the election. Abortion issues are polling incredibly well, obviously with women. You have abortion rights on the ballot in several states, including swing states. This is kind of a make-or-break issue to win the presidential for Democrats. And for Kamala Harris to be able to give not just a coherent answer but one that actually had some resonance, I think, was just so markedly different that people ended up as surprised as you pointed out.

Griffin: Just want to add here that this is a space that she is so incredibly comfortable talking about on the campaign trail. Even before she assumed the top of the ticket, this had been her marquee subject. And I’ve been moonlighting as a Kamala Harris campaign reporter for the last few months. Every rally you go to, this is where she gets the biggest applause. This is the note that strikes, that resonates with the crowd. She had been doing what she called a “Reproductive Freedom” tour through swing states four months prior to assuming the top of the ticket. So it’s no surprise that she is quick not just to talk about the stakes of the overturning of Roe v. Wade but also fact-check the former president. There was a really fitting moment during the debate where she said: “Nowhere in America is a woman carrying a pregnancy to term and asking for an abortion. That is not happening.” So that she could not only come and deliver the lines but also listen to Donald Trump respond to some of the factual errors in real time was again a marked difference from President Joe Biden.

Rovner: Yes, it was a very different debate, I will say. There was actually, a bit surprising to me also, some discussion of the Affordable Care Act. Apparently Donald Trump is now saying that he’s the one who saved it, which is not exactly how I remember things going down. Is that an acknowledgment that the ACA is now here to stay? Or should we still assume that if Republicans take control of the White House and Congress they will, at the very least, let those expanded ACA subsidies expire?

Cohrs Zhang: I think there’s a very good chance that those subsidies do expire. It just obviously depends on control of Congress and how much leverage Democrats have and what they’re willing to give up to get them. And again, it’s kind of difficult because a lot of the states that benefit the most from these subsidies are Republican states that have not expanded Medicaid. So I think there are some difficult political considerations for the Republican Caucus on that issue. But I think Trump was implying that maybe he could have done more to sabotage the ACA without actually revealing it.

Rovner: That’s kind of true.

Cohrs Zhang: Yeah, so I think that was an interesting point. And of course he returned to the refrain that he’s going to have a plan. We haven’t seen a plan for nine years.

Rovner: He has the …

Rovner and Weber (together): … “concepts” of a plan.

Cohrs Zhang: We’ll see it soon.

Weber: I think it’s important to also fact-check Trump on saying he improved the ACA. I want to read a list of things from a great Stat article: “While in office, Trump’s administration shortened open enrollment periods, cut funding for navigators who help people enroll … expanded short-term insurance plans, lowered standards for health benefits provided by small employers that banded [together] into larger groups and enabled employers with religious or moral objections to contraceptive coverage to opt out of requirements to provide no-cost coverage.” So I think some of his as assertations about improving the ACA are up for debate, depending on how you feel about that list of things I just read.

Griffin: And you can also see the impact in enrollment. We had some really interesting data released just before the debate, conveniently, by the Treasury Department showing that the Biden administration had ushered in this all-time-high enrollment in the ACA insurance marketplaces. But what was also tucked into that data was that under the Trump administration, there was also pretty significant lows compared to the other parts of the last 10 years. So that’s notable, too.

Rovner: Yes. And actually you’re anticipating my very next question, which is, while we are on the subject of the ACA, the Census Bureau was also out this week with its annual estimate of people without insurance, and, surprise, even with the Medicaid unwinding and people being dumped off of the Medicaid rolls, the 2023 uninsured rate of about 8% remained near the all-time low that it achieved under the Biden administration. Now, this is not the complete picture of the uninsured. Those who lost coverage at any point during 2023, which is when everybody on the unwinding lost coverage, wouldn’t be counted as uninsured for the purposes of this particular survey, which counts people who were uninsured for the entire year. But the Biden administration, the day before, released an analysis finding that over the 10 years that the Affordable Care Act marketplaces have been operational, 1 in 7 Americans has been enrolled in one of the plans. Is this a first election where the ACA could turn out to be a boon for its backers rather than an albatross around their necks?

Weber: I think KFF polling, recent numbers say some 60% of Americans support the ACA. So that would be a majority of Americans that would be very unhappy if it was repealed. So I mean to your point, Julie, I think the popular opinion has shifted on the ACA and we’re in new ground here.

Cohrs Zhang: Even in 2020, I think after all of that happened, I think there was this realization that maybe this isn’t a viable option, so we should stop promising it to people. And I think Democrats had gotten so much momentum on all of the claims that Republicans did want to take apart the ACA, and we saw that conversation in the Supreme Court as well. And I think that reality has just become so much more real with Dobbs and seeing that when the makeup of a court changes, court decisions can change, and that elections matter in that calculus. So I think we started to see the movement in 2020, but obviously there was so much pandemic going on that I think some of these other health care lines got lost in that election, that we’re seeing come out a little more clearly this time around.

Rovner: And, of course, despite Donald Trump now becoming a latter-day champion of the ACA — sort of — if Republicans win back control of Congress and the White House, we’ve got both these expanded subsidies — that, as we pointed out, have enabled this big enrollment — expiring, and the Trump tax cuts expiring. It’s hard to imagine both of those getting extended. One would think that the Republicans’ priority would be the tax cuts and not the subsidies, right?

Cohrs Zhang: Yeah. Again, depends on whether Democrats are able to hold a chamber of Congress and what kind of leverage they have.

Rovner: Yeah, that’s obviously a 2025 issue. Well, turning to elected officials who are already in office, today is Sept. 12, and that means Congress has basically eight more working days to avoid a government shutdown by either passing all of the 12 regular spending bills or some sort of continuing resolution to keep agencies funded after the Oct. 1 start of fiscal 2025. This is where I get to say for the millionth time that when Congress settled the funding for fiscal 2024 last — checks notes — March, House Republicans vowed again to have this year’s funding bills finished on time. Rachel, that did not happen. So where are we?

Cohrs Zhang: It does not happen. Yeah, I think it’s business as usual around here. I think, honestly, the posturing has started earlier than I expected with the House speaker, Mike Johnson, putting out this proposal for a CR [continuing resolution] that he couldn’t even get through the House. He kind of pulled that before it came to a vote on the floor. So I guess that’s, at least, an opening salvo earlier than we see, usually, early in September.

Rovner: Well, this was the big fight about: Do we want a CR that goes to after Thanksgiving, which would be the typical CR, and then we’ll come back after the election and fight about next year’s funding? Or, in this case, they wanted a CR that went until next March, I guess betting that maybe the Republicans will be in charge then and they’ll have more of a say over this year’s spending than they do now?

Cohrs Zhang: Right. I think that’s certainly an open question, and I think it seems like Senate appropriators are not necessarily on board with that March timeline at this point. They really would like to wrap things up in December. And again, I think, looking back in 2020, we did see a really significant appropriations package with a lot of health care policy pass at the end, kind of in the December time frame of 2020, in lame-duck. So I think it’s a really big question.

And then the other question is: Do all these expiring health care programs that are currently slated to end in December get extended with that appropriations package? I think there’s just a lot of moving parts here, and we don’t exactly know what the deadlines are going to be yet. But at least they’re arguing about it in the public sphere, so that’s a start.

Rovner: They’re legislating. That’s what they do. Lauren?

Weber: I just wanted to say, Julie, I think you should have a segment that’s a tally of how many times you ask on this podcast if the funding bill has passed. Because I know myself, I’ve been on many, and I really think it’d be kind of funny. So I’m just saying it’s quite fascinating over the years, the many, many times these bills do not seem to make it.

Rovner: Well, this is just me as the lifelong Capitol Hill reporter who — we’re always talking about what’s going to happen next year and the year after. It’s like: You have a job to do this year. Let’s see how you’re doing in the job that you have to do this year. Does anybody think there’s actually going to be a shutdown? I mean, that’s still a possibility if they don’t get a deal, although that would be — I’m trying to remember if we’ve ever seen a government shutdown in a presidential election year. That seems risky politically? Riley, I see you sort of raising your eyebrows.

Griffin: Yeah, it’s definitely risky and clearly something right now you can see that the Biden administration wants to avoid. I was sitting in the White House press briefing room on Monday and Karine [Jean-Pierre], the press secretary, was like: This is Congress’ one job. This is their main job. It’s to keep the government open. So there’s a level of frustration that, I think, this is coming into the discourse yet again, but to be expected.

Rovner: Yeah. And I should point out, it’s not just Republicans that are unable to get funding bills done on time. The Democrats are unable to get their funding bills done on time, either. I believe that the last time all of the funding bills were actually passed before Oct. 1 was the year 2000.

Weber: This is why this should be a Julie segment. I’m telling you, you should run a tally.

Rovner: Yes. Well, it is kind of a Julie segment.

Weber: Yes.

Rovner: And I will keep at it, because this is my job, too. All right, turning back to abortion, in the debate Tuesday night, Vice President Harris talked at some length about some of the unintended consequences of abortion bans, as we discussed — women unable to get miscarriage care, girls being forced to carry pregnancies resulting from incest all the way to term. Now we have another new potential health risk in Louisiana. The new law that makes the abortion medications mifepristone and misoprostol controlled substances is resulting in a major disruption to hemorrhage care. It seems that misoprostol, which is used for a variety of purposes other than abortion — it was originally an ulcer drug — is a key emergency drug used in a wide variety of reproductive health emergencies. And it’s not clear what will take its place on emergency carts, since you can’t have controlled substances just hanging around in the hallways. Is this yet another example of lawmakers basically practicing medicine without a license?

Weber: I think that’s right, Julie. I spoke to a Louisiana ER doctor last week who put it pretty bluntly. He’s like, Look, I have a woman who’s bleeding out in front of me, and I need to call down to the pharmacy and put in an order? That could take not just seconds, not just minutes, but many minutes, even longer in possibly rural pharmacieswhere the access may not be as readily available. He’s like, This is truly a life-or-death issue. Women, when you are bleeding out from post-birth complications, which by the way is not as uncommon as people would like to think it is, this is really quite something. And so folks in Louisiana are obviously very up in arms.

And I think it speaks, as you pointed out, to the larger environment that Kamala Harris has pointed to — and many reporters that have been on your show and that we have discussed many times on the show — is that there are many unintended consequences for laws that limit abortion and for women seeking access to care where hospitals afraid that they’re not going to interpret the law correctly are leaving women to seek care elsewhere. And what are the health ramifications of that? But this is a pretty frightening unintended consequence.

Rovner: Yeah, this was something that I was not aware of, that I had not seen. Of course, Louisiana is the first state to basically declare these controlled substances. So it seems that every time we get a new restriction, there’s a new twist to it that I think most people did not expect.

There’s also been lots of court actions, obviously, on abortion in the past few weeks. In Missouri, last week a judge tried to strike the state’s abortion rights referendum from the ballot, although this week a higher court ordered it back on the ballot. I believe that’s the final word on Missouri. They will vote on it in November. In Alaska, a judge struck down a state law that limited who could perform abortions to just doctors rather than doctors and other medical professionals. And in Texas, Attorney General Ken Paxton filed suit against a new federal rule that shields the medical records of women who cross state lines to obtain an abortion in a state where it’s legal, which it’s not in Texas. It would seem the implication here is that Texas wants to prosecute women who leave the state for a legal medical procedure. Or am I misinterpreting that somehow?

Griffin: That’s my understanding as well. And it’s a development that, I believe the rule was announced in April when Biden had said that no one should have their medical records used against them, and lo and behold we’re a few months later, but this Texas lawsuit does suggest that this could be a part of criminal prosecution.

Rovner: I know. I mean this seems to be sort of this underlying issue of what happens to women who live in banned states who go to other states to obtain abortions. And there’s been a lot of back-and-forth and a lot of people, even on the anti-abortion side, trying to say that this is not our intent. But this certainly seems to be the intent of some people. Seeing nods all around. We will continue to follow this string.

Finally this week, I want to talk about mental health. Over the objections of some insurers and large employer groups, the Biden administration finalized the latest set of rules attempting to guarantee parity between coverage for mental health and substance abuse and every other type of medical care. This is literally a 30-year fight that’s been going on to regularize, if you will, coverage of mental health. This action comes just as ProPublica is unveiling a pretty remarkable series on the inability of patients, even patients with insurance — in fact, mostly patients with insurance — to obtain needed health care, often with catastrophic consequences. Rachel, one of those stories is your extra credit this week. Why don’t you tell us about it?

Cohrs Zhang: It is, yes. So my extra credit is “‘I Don’t Want To Die’: Needing Mental Health Care, He Got Trapped in His Insurer’s Ghost Network,” by Max Blau and ProPublica. And I think this story kind of really makes clear the consequences for certain patients, especially mental health patients in crisis, of when the list that you get from your insurer of in-network providers is inaccurate.

And I think ghost networks, it’s kind of a weird, jargon-y term, I think. There have been some hearings on the issue on the Hill. But when we think about somebody who desperately needs some crisis counseling and they’re doing everything they can, they’re exhausted, they’re already dealing with so much to already have to call provider after provider who doesn’t take their insurance anymore, doesn’t know what they’re talking about, it’s just such a frustrating process that I think many of us have experienced. I personally have experienced it getting an MRI in Los Angeles, and the list is out of date. And I think there’s definitely room for regulation here. And I think that mental health care, through this series, was just highlighted as such an important part of that conversation.

Rovner: Yeah, we’ve all had this, and we’ve all written the stories about people who have lists of in-network providers and can’t find one or can’t find one who’s taking new patients, or the provider there does not do what the directory suggests that they do. They may say they may only treat children, or they may not treat children. But I think in mental health, these are people in mental health crises trying to get care that they are guaranteed by law and guaranteed under their insurance and being unable to do it — and as I say, often, sometimes, not un-often with catastrophic consequences. Needing mental health care is not just somebody who says, “Oh, I don’t feel well today.” These often are people who are in actual crisis situations.

So speaking of people who are in actual mental health crisis situations, The New York Times has a piece this week on a chain of mental hospitals that’s basically holding patients in their facilities against their will to get as much as they can collect from insurance. In some cases, patients’ relatives have had to get court orders to get their patients released. How did we let our mental health system get so far off the tracks? Either you can’t get care or you get care that you can’t get out of.

Weber: Well, this piece by Jessica Silver-Greenberg and Katie Thomas, which is truly phenomenal — everyone who’s listening to this should read it — makes a very astute point, which is that the government and nonprofits have really gotten out of the psychiatric hospital business, and for-profit companies have swept in. And they interview several former employees who make it very clear that these were run with profit incentives in mind, of holding patients to maximize the insurance money they could get, to catastrophic effects. The details in this are wild. They talk about people having to go to court to get folks out, very clear violations. And again, they speak to not just one, not just two, but multiple former employees who allege that this company was acting in such a way that was not for its patients’ best interest.

Cohrs Zhang: And I do have to do a plug for my colleague Tara Bannow, who also reported on Acadia and how they’re kind of operating mental health institutions under the brand names of Catholic hospitals. So people might even think that they’re going to a well-respected community hospital under the name, but these for-profit institutions have even made their way into not-for-profit spaces, and these services are just being contracted out, because they’re simply unprofitable.

Rovner: And we talked about Tara’s story when it came out.

Cohrs Zhang: We did, yeah.

Rovner: A month or two ago.

Cohrs Zhang: Yeah, this next story is a great — kind of building on, building just a fuller story around the implications of for-profit.

Rovner: It does sort of, both this and, I think, the ProPublica series highlight in the ’60s and ’70s, the problem was people who were in state-run facilities. And they were warehoused, and they were underfunded, and people just didn’t get the care that they needed. And that was one of the things that led to deinstitutionalization, which of course is one of the things that ended up leading us to the homeless, because when they deinstitutionalized these patients, they were promised outpatient care which never materialized. So now we’ve kind of profitized this, if you will, and we have a different set of problems. It’s every bit as bad. It’s kind of a microcosm of the entire health care system. It’s like, well, we don’t really trust the nonprofit sector to run it right, because they don’t have enough money. And now we don’t trust the for-profit sector to run it right, because they have too much of a profit motive. Is there any middle ground here?

Griffin: I think we could spend weeks, you could have a whole podcast just dedicated to this question, and it’s a harrowing one. And there’s a parallel discussion to be had also about the centers that navigate patients who are seeking treatment for substance use, right? Often those are one and the same, but I think the same dynamics are playing out here. And to the mental health parity regulation that was finalized, that included substance use benefits, too. It wasn’t just mental health. So yeah, I don’t know. I say with a heavy heart that we could talk about this a long time, but I don’t have any answers for where the best care is going to be.

Rovner: Yeah, none of us, I think, does. And that’s why we were all going to have jobs from now until eternity as we at least keep working on this.

All right, well, that is the news for this week. Now it is time for our extra credits. That’s when we each recommend a story we read this week, we think you should read, too. Don’t worry if you miss the details. We will include links to all these stories in our show notes, on your phone or other mobile device. Rachel, you’ve already done yours. Lauren, why don’t you go next?

Weber: So I picked a story from Stat titled “Youth Vaping Continues Its Tumble From a Juul-Fueled High,” written by Lizzy Lawrence. And I was really struck, I’m sure public health officials are really struck, by how far vaping rates have gone. I mean, they’re down to 6% of middle and high school students using vapes in 2024. That’s down from 8% last year and 20% in 2019. I mean, that is a marked change. And I expected to read this article and see, Oh, but don’t worry, they’re all using Zyn, which is another nicotine product. But, actually, that had only gone up to about 1.8%. It was not nearly the same bit. And I think if you’re a public health official, you’ve got to be pretty pleased with yourself, because this would seem to show that the public health action that they very aggressively took at both the federal, national, and in some places locality level to limit flavored vapes and have other actions for kids has resulted in a pretty steep decline, much faster than you saw cigarette use decline. So I was really impressed to see these numbers. It’s quite a change.

Rovner: Yeah. Yay public health. Riley?

Griffin: Yeah, I want to tout a story from my colleague Madison Muller. It’s titled “Lilly Bulks Up Irish Operations in Obesity Drug Production Push.” And she’s actually in Ireland right now. She was reporting out this story. Ultimately, we all know there’s been this immense demand for obesity drugs — Eli Lilly and Co. has two, Mounjaro and Zepbound — and they just can’t seem to build out production quickly enough. My colleague did some data analysis here and actually found that since 2020, believe it or not, Lilly has poured 17.3 billion [dollars] into weight-loss drug manufacturing. I mean, what an insane number. And the latest push is in Ireland, which is notable because here in Washington there’s been a lot of work to scrutinize and even prevent U.S. drugmakers from collaborating with Chinese manufacturers of biologics. So sometimes they talk about “near-shoring” or “friend-shoring” in D.C., which is really a kitschy term to refer to seeing more friendly countries to the United States bolstering up manufacturing, and here you see Lilly doing just that. So it’s a fun story, and kudos to Madison, who went out to Ireland to tell it.

Rovner: I’d love to be sent to Ireland.

Weber: Yeah, I need to get more stories in Ireland. I mean, what? That’s amazing.

Rovner: Just saying. It is a good story. All right. Well, my story this week is from The Wall Street Journal, by Rebecca Ballhaus, and it’s called “A Nurse Practitioner’s $25,000 in Student-Debt Relief Turned Into a $217,500 Bill From the Government.” And it’s a really infuriating story about a really excellent government program called the National Health Service Corps that helps medical professionals pay off their loans if they agree to practice in underserved areas. The problem is that there are penalties if you fail to complete your term of service, which obviously there should be.

But in this case, one of the nurse practitioners’ supervising physicians died, and the other one retired, and there were no other eligible placements within two hours of her Alabama home, where she cared for her three young children as well as her elderly parents. Obviously there should be consequences for breaching a contract, but this is far from the only case where people who are obviously deserving of exceptions are being denied them. The National Student Legal Defense Network has filed suit on the nurse practitioner’s behalf, and I’ll be watching to see how this all turns out.

OK. That is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review. That helps other people find us, too. Special thanks as always to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X. I’m @jrovner. Riley, where are you hanging these days?

Griffin: I’m on X, though infrequently, @rileyraygriffin.

Rovner: Lauren?

Weber: Still only on X, @LaurenWeberHP.

Rovner: Rachel?

Cohrs Zhang: Still on X, @rachelcohrs.

Rovner: We will be back in your feed next week. Until then, be healthy.

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Silence in Sikeston: Racism Can Make You Sick

SIKESTON, Mo. — In 1942, Mable Cook was a teenager. She was standing on her front porch when she witnessed the lynching of Cleo Wright.

In the aftermath, Cook received advice from her father that was intended to keep her safe.

“He didn’t want us talking about it,” Cook said. “He told us to forget it.”

SIKESTON, Mo. — In 1942, Mable Cook was a teenager. She was standing on her front porch when she witnessed the lynching of Cleo Wright.

In the aftermath, Cook received advice from her father that was intended to keep her safe.

“He didn’t want us talking about it,” Cook said. “He told us to forget it.”

More than 80 years later, residents of Sikeston still find it difficult to talk about the lynching.

Conversations with Cook, one of the few remaining witnesses of the lynching, launch a discussion of the health consequences of racism and violence in the United States. Host Cara Anthony speaks with historian Eddie R. Cole and racial equity scholar Keisha Bentley-Edwards about the physical, mental, and emotional burdens on Sikeston residents and Black Americans in general.

“Oftentimes, people who experience racial trauma are forced to not acknowledge it,” Bentley-Edwards said. “They’re forced to question whether or not it happened in the first place.”

Host

Cara Anthony
Midwest correspondent, KFF Health News


@CaraRAnthony


Read Cara's stories

Cara is an Edward R. Murrow and National Association of Black Journalists award-winning reporter from East St. Louis, Illinois. Her work has appeared in The New York Times, Time magazine, NPR, and other outlets nationwide. Her reporting trip to the Missouri Bootheel in August 2020 launched the “Silence in Sikeston” project. She is a producer on the documentary and the podcast’s host.

In Conversation With …

Eddie R. Cole
Professor of education and history, UCLA

Keisha Bentley-Edwards
Associate professor of medicine, Division of General Internal Medicine at Duke University

Carol Anderson
Professor of African American studies, Emory University

click to open the transcript

Transcript: Racism Can Make You Sick

“Silence in Sikeston,” Episode 1: “Racism Can Make You Sick” Transcript 

Editor’s note: If you are able, we encourage you to listen to the audio of “Silence in Sikeston,” which includes emotion and emphasis not found in the transcript. This transcript, generated using transcription software, has been edited for style and clarity. Please use the transcript as a tool but check the corresponding audio before quoting the podcast. 

Cara Anthony: Sikeston sits in the Missouri Bootheel. That’s the lower corner of the state, with the Mississippi River on one side, Arkansas on the other. Lots of people say it’s where the South meets the Midwest. 

Picture cotton, soybeans, rice. It’s hot, green, and flat. If you’ve ever heard of Sikeston before, it’s probably because of this: 

Ryan Skinner: Hot rolls! 

Cara Anthony: Lambert’s Café. Home of the “Throwed Rolls.” 

Server: Yeah, they’ll say, uh, “Hot rolls!” And people will hold their hands up and they’ll toss it to you. 

Cara Anthony: The servers walk around with carts and throw these big dinner rolls at diners. 

Ryan Skinner: Oh, it’s fun. You get to nail people in the head and not get in trouble for it. 

Cara Anthony: There’s the rodeo. The cotton carnival. 

But I came to see Rhonda Council. 

Rhonda Council: My name is Rhonda Council. I was born and raised here in Sikeston. 

Cara Anthony: Rhonda is the town’s first Black city clerk. 

She became my guide. I met her when I came here to make a film about the little-known history of racial violence in Sikeston. 

I’m Cara Anthony. I’m a health reporter. I cover the ways racism — including violence — affects health. 

Rhonda grew up in the shadow of that violence — in a part of town where nearly everyone was Black. It’s called Sunset. 

Rhonda Council: Sunset was a happy place. I remember just being, as a kid, we could walk down to the store, we could just go get candy. 

Cara Anthony: There were churches and a school there. 

Rhonda Council: We knew everybody in the community. If we did something wrong, you can best believe your parents was going to find out about it before you got home. 

Cara Anthony: Back in the day, these were dirt roads. 

Cara Anthony: OK, so we’re getting ready to go on a tour of Sunset, which used to be known as the Sunset Addition, right? 

Rhonda Council: Mm-hmm, yes. Mm-hmm. 

Cara Anthony: We got into her car, along with Rhonda’s mother and her grandmother, Mable Cook. 

Rhonda Council: This street was known as The Bottom. Everything Black-owned. They had clubs, they had stores, they even had houses that people stayed in. I think it was shotgun houses back then? 

Mable Cook: Uh-huh. 

Cara Anthony: That’s Rhonda’s grandmother, Ms. Mable, right there. She was a teenager here in the 1940s. Her memory of the place seems to get stronger with each uh-huh and mm-hmm. 

Rhonda Council: And this was just the place where people went on the weekend to, you know, have a good time and party. … And this area was kind of known as “the corner” because they used to have a club here. And they would … they would gamble a lot down here. They would throw dice. Everything down here on the corner. 

Mable Cook: That’s right. Sure did. Mm-hmm. 

Rhonda Council: You remember this street, Grandma? 

Mable Cook: Yeah, I’m trying to see where the store used to be. 

Rhonda Council: OK. 

Mable Cook: I think it was close to Smith Chapel. 

Rhonda Council: OK. 

Cara Anthony: Rhonda’s grandmother, Ms. Mable, was 97 then. 

Rhonda Council: She is a petite lady, to me, thin-framed. I describe her eyes as like a grayish-color eyes. And I don’t know if it’s because of old age, but I think they’re so beautiful. And she just has a pretty smile, and she’s just a fantastic lady. 

Cara Anthony: Ms. Mable was born in Indianola, Mississippi. When she was 14, her father moved to Sikeston looking for work. 

Rhonda Council: And so she came up here to, um, to be with her father. But she said when she came to Sikeston, she said it was an unusual experience because they were not allowed to go to stores. They were not allowed to, basically, be with the white people. And that’s not what she knew down in Mississippi. And in her mind, she couldn’t understand why Missouri, why Sikeston was like that in treating Black people that way. 

And not too long after that, the lynching of Cleo Wright occurred. 

[BEAT]  

Cara Anthony: It was 1942. While the United States was at war marching to stop fascism, a white mob here went unchecked and lynched a man named Cleo Wright. 

The lynching of a Black man in America was not uncommon. And often barely documented. 

But in the case of Cleo Wright — perhaps because the death challenged what the nation said it was fighting for — the killing in this small town made national news. 

The case generated enough attention that the FBI conducted the first federal investigation into a lynching. That investigation ultimately amounted to nothing. 

Meanwhile — here in Sikeston — the response to the brutal death was mostly silence. 

Eight decades later, another Black man was killed in Sikeston. This time by police. 

Local media outlets, like KFVS, covered it as a crime story: 

KFVS report: The Missouri State Highway Patrol says troopers must piece together exactly what led to the shooting death of 22-year-old Denzel Marshall Taylor. 

Cara Anthony: I think the killings of Denzel Taylor and Cleo Wright are a public health story. 

Our film “Silence in Sikeston” is grounded in my reporting about Cleo and Denzel. Part of the record of the community’s trauma and silence is captured in the film. This podcast extends that conversation. 

We’re exploring what it means to live with that stress — of racism, of violence. And we’re going to talk about the toll that it takes on our health as Black Americans, especially as we try to stay safe. 

In each episode, we’ll hear a story from my reporting. Then, a guest and I will talk about it. 

The history … 

Carol Anderson: The power of lynching is to terrorize the Black community, and one of the ways the community deals with that terror is the silence of it. […] And when you don’t deal with the wound, it creates all kinds of damage. 

Cara Anthony: And health … 

Aiesha Lee: It’s almost like every time we’re silent, it’s like a little pinprick. […] And after so long, those little pinpricks turn up as heart disease, as cancer, as all these other ailments. 

Cara Anthony: I’m hoping this journalism, and these stories, will spark a conversation that you’ve been meaning to have. 

This is an invitation. 

From WORLD Channel and KFF Health News and distributed by PRX, this is “Silence in Sikeston,” the podcast.  

Episode 1: “Racism Can Make You Sick” 

[BEAT] 

Cara Anthony: Ms. Mable was a witness to the lynching of Cleo Wright. The 25-year-old was about to become a father. 

Rhonda’s uncle says Cleo was … 

Harry Howard: Young, handsome, an athlete, and very well known in the community. 

Cara Anthony: That’s Harry Howard. He didn’t know Cleo. Harry wasn’t even born yet. But his uncle knew Cleo. 

Harry Howard: They were friends. They would shoot pool together and were known to be at the little corner store, the Scott’s Grocery. 

Cara Anthony: Harry’s family passed down the story of what happened. 

Harry Howard: So everything I’m reporting is the way it was told by people I trust. 

Cara Anthony: Black families mostly talked about it in whispers. 

Eddie R. Cole: And that sounds like this is one of those situations where that community would rather just leave this alone and try to move on with the life that you do have instead of losing more life. 

Cara Anthony: That’s my friend Eddie Cole. He’s a professor of history and education at UCLA. 

We were in college together at Tennessee State and worked on the school newspaper.  

I called up Eddie because I wanted to get his take as a historian. What happens when we keep quiet about a story like Cleo’s? 

Eddie R. Cole: Yeah, I’m Eddie Cole. … So here we go. 

Cara Anthony: Thousands of Black people were lynched before Cleo Wright was. But this was the first time the feds said, “Hey, we should go to Sikeston and investigate lynching as a federal crime.” 

This story though, seriously, like it just disappeared off the face of the map. Like, it’s, it’s scary to me. So many of the witnesses that I interviewed, they’ve passed away, Eddie, since we started this journey. And it’s frightening to me to think that their stories … that these stories can literally just go away. 

[BEAT]  

Eddie R. Cole: Lynching stories disappear but don’t disappear, right? So, the people who committed the crime, they committed it and went on with their day, which is twisted within itself, even to think about that. 

But on the other side, when you think about Black Americans, there was no need to talk a lot about it, right? Because you talk too much about some things and that same sort of militia justice might come to your front door in the middle of the night, right? Stories like this are known but not recorded. 

Cara Anthony: The hush that surrounded Cleo’s story back then was for Black people’s safety. But I’m conflicted. Should Cleo’s story be off the table? Or … could we be missing an opportunity for healing? 

On the phone with Eddie, I could feel this anxiety building up in me. I was almost afraid to bring it up, even though it was the reason why I called. 

[BEAT]  

Cara Anthony: And I will be honest with you, I think of you the same way I think of my brother, my father, like, I’ve almost wanted to protect the Black men in my life from that story because I know how hard it is to hear. 

Cara Anthony: It was January 1942. Cleo was accused of assaulting a white woman. A police officer arrested him; there was a fight. Cleo was beaten and shot. Covered in blood, he was eventually taken to jail. White residents of Sikeston mobbed the jail to get to Cleo. 

Cara Anthony: I do want to play a clip for you, just so you can hear a little bit, if you are up for that, because it’s a lot. How are you feeling about that today? 

Eddie R. Cole: No, I want to hear. I mean, I gotta know more now. You just told me there’s a story that just disappeared, but now you’re bringing it back to life. So let’s play the clip. 

Cara Anthony: All right. Let’s do it. 

Harry Howard: They took him out of the jail and drug him from downtown on Center Street through the Black area of Sunset. 

Obviously, it was a big commotion, and they were saying, “What’s going on?” And the man driving the station wagon told them, “Get out of the street,” and, of course, used the N-word. “There’s a lynching coming.” 

Cara Anthony: Historian Carol Anderson is a professor of African American studies at Emory University. She takes it from there. 

Carol Anderson: They hook him to the bumper of the car and decide to make an example of him in the Black community. 

The mob douses his body with five gallons of gasoline and set it on fire. People are going, “Oh my God, they are burning a Black man. They are burning a Black man. They have lynched a Black man.” 

Cara Anthony: I always need to take a deep breath after hearing that story. So, I check in with Eddie. 

Cara Anthony: OK. How you doing? You OK? 

Eddie R. Cole: Yeah, yeah, um, that was tough. 

Cara Anthony: I’ve grappled a lot with the question of why, like, why now? Why this story? Am I crazy for doing this? 

Eddie R. Cole: Yeah, I mean, this story is really an entry point to talk about society at large. Imagine the people who like the world that we’re in. A world where Black people are oppressed. Right? And so not telling stories like what happens in Sikeston is an easier way to just keep the status quo. And what you’re doing is pushing back on it and saying, ah, we must remember, because the remnants of this period still shape this town today. 

[BEAT]  

Cara Anthony: On the tour of Sikeston with Rhonda, I see that. 

Rhonda Council: We’re going to go in front of the church where Cleo Wright was burned. 

When we get down here to the right, you’ll see Smith Chapel Church. And wasn’t it over here in this way where he got burnt, Grandma? 

Mable Cook: Uh-huh, yep. 

Rhonda Council: OK. From what I hear, it happened right along in this area right here. 

Cara Anthony: It’s a small brick church with a steeple on top. The road is paved now, not gravel as before. It all looks so … normal. 

You’d think that kind of violence, so much hate, would leave a mark on the Earth. But on the day we visited, there was nothing to see. Just the church and the road. 

Ms. Mable is quiet. I wonder what she’s thinking. 

Mable Cook: I just remember them dragging him. They drove him from, uh, the police station out to Sunset Addition. But they took him around all the streets so everybody could see. 

Cara Anthony: Back at Rhonda’s home, we talked more about what Ms. Mable remembered. 

Rhonda Council: Did that affect you in any way when you saw that happening? 

Mable Cook: Yeah, it hurt because I never had seen anything like that. Mm-hmm. And it kind of got me. I was just surprised or something. I don’t know. Mm-hmm. 

Cara Anthony: Remember Ms. Mable had been a child in Mississippi in the ’30s — and it wasn’t until she moved north to Sikeston that she came face to face with a lynching. 

Rhonda Council: Did it stick in your mind after that for a long time? 

Mable Cook: Yeah, it did. It did stick because I just wondered why they wanted to do that to him. You know, they could have just taken him and put him in jail or something and not do all that to him. 

I just never had seen anything like it. I had heard people talking about it, but I had never seen anything like that. 

Cara Anthony: When it happened, a lot of Black families in Sikeston scattered, fled town to places that felt safer. Mable’s family returned to Mississippi for a week. 

But when they got back, she says, Sikeston went on like nothing had ever happened.  

Here’s Rhonda with Ms. Mable again. 

Rhonda Council: After you all saw the lynching that happened, did you and your friends talk about that? 

Mable Cook: No, we didn’t have none … we didn’t talk about it. My daddy told us not to have nothing be said about it, uh-uh. 

Rhonda Council: Oh, because your dad said that. 

Mable Cook: That’s right. He told us not to worry about it, not talk about it. Uh-huh. And he said it’ll go away if you not talk about it, you know, uh-huh. 

Rhonda Council: So over the years, did you ever want to get it out? Did you ever want to talk about it? 

Mable Cook: Yeah, I did want to. Uh-huh. I wanted to. Uh-huh. 

Rhonda Council: But you just couldn’t do it. 

Mable Cook: No. No. Uh-uh. No, he didn’t want us talking about it. He told us to forget it. 

Cara Anthony: Forget it. Don’t talk about it. It’ll go away. 

And, in a way, it did. 

No one was charged. No one went to prison. Cleo’s name faded from the news. 

[BEAT]   

Cara Anthony: But decades later, Ms. Mable, the witness; Rhonda, her granddaughter; and me, the journalist, we talked about it a lot. 

We turned the story over and over, and as I listened to Ms. Mable, there was a distance between the almost matter-of-fact way she described the lynching and what I expected her feelings would be. 

I asked her if she was ever depressed … or if she had sleepless nights, anxiety. As a health reporter, I was on the lookout for symptoms of post-traumatic stress disorder. 

But Ms. Mable said no. 

That surprised me. And Rhonda, too. 

Cara Anthony: If we were to roll back the clock, go in a time machine, it’s 1942. All of a sudden, you see Cleo Wright’s body on the back of a car. How do you, can you even imagine that? 

Rhonda Council: I could not imagine. And even when talking to her about it, and she had such a vivid memory of it. And you ask her, did it haunt her, and she said no, she, it didn’t bother her, but I know deep down inside it had to because there’s no way that you could see something like that — someone dragged through the streets, basically naked going over rocks and the body just being dragged. 

I, I don’t know how I could have handled it because that’s just very, you just can’t treat a human being like that. 

Cara Anthony: That’s what’s so hard about these stories. And the research shows that seeing that kind of brutal, racial violence has health effects. But how do we recognize them? And what happens if we don’t? 

Those are some of the questions I asked Keisha Bentley-Edwards. 

Keisha Bentley-Edwards: Oftentimes, people who experience racial trauma are forced to not acknowledge it as such, or they’re forced to question whether or not it happened in the first place. 

Cara Anthony: Keisha is an associate professor in medicine at Duke University. She studies structural racism and chronic health conditions and knows a lot about what happens after a lynching. 

Keisha Bentley-Edwards: It’s difficult to talk about racism. And part of it is that you’re talking about power, who has it, who doesn’t have it. 

It’s not fun to talk about constantly being in a state where someone else can control your life with little recourse. 

Cara Anthony: That’s even more complicated in a place like Sikeston. 

Keisha Bentley-Edwards: When you’re in a smaller city, there is no way to turn away from the people who were the perpetrators of a race-based crime. And that, in and of itself, is a trauma. To know that someone has victimized your family member and you still have to say hello, you still have to say, “Good morning, ma’am.” And you have to just swallow your trauma in order to make the person who committed that trauma comfortable so that you don’t put your own family members at risk. 

Cara Anthony: Keisha says part of the stress comes from being Black and always being aware — alert — that the everyday ways you move through the world can be perceived as a threat to other people. 

Keisha Bentley-Edwards: Your life as a Black person is precarious. And I think that is what’s so hard about lynchings and these types of racist incidents is that so much of it is about, “I turned left when I could have turned right.” 

You know, “If I had just turned right or if I had stayed at home for another 10 minutes, this wouldn’t have happened.” 

Cara Anthony: That’s as true today as it was when Cleo Wright was alive. 

Keisha Bentley-Edwards: So, you don’t have to know the history of lynching to be affected by it. And so if you want to dismantle the legacy of the histories, you actually have to know it. So that you can address it and actually have some type of reconciliation and to move forward. 

Cara Anthony: I don’t know how you move on from something like the lynching of Cleo Wright. But breaking the silence is a step. 

And at 97, Ms. Mable did just that. 

She spoke to me. She trusted me enough to talk about it. Afterward, she said she felt lighter. 

Mable Cook: That’s right. Mm-hmm. So, it makes me feel much better after getting it out. 

[BEAT]  

Cara Anthony: A couple of years after we took the tour of Sikeston together, Ms. Mable died. 

When they lowered her casket into the ground, Ms. Mable’s family played a hymn she loved. 

It was a song she had sung for me … the day she invited me to visit her church. We sat in the pews. It was the middle of the week, but she was in her Sunday best. 

As we talked about Cleo Wright and Ms. Mable’s life in Sikeston, she told me she came back to that hymn over and over. 

Mable Cook: “Glory, Glory.” That’s what it was. [SINGING] Glory, glory, hallelujah. Since I laid my burden down. Glory, glory, hallelujah. Since I laid my burdens down […] 

Cara Anthony: I grew up singing that song. But before that moment, it was just another hymn in church. When Ms. Mable sang, it became something else. It sounded more like … an anthem. A call to acknowledge what we’ve been carrying with us in our bodies and minds. And to know it’s possible to talk about it … and maybe feel lighter. 

Mable Cook: [SINGING] … Every route go high and higher since I laid my burden down. Every route go high and higher since I laid my burden down […] 

Cara Anthony: Racism is heavy and it’s making Black people sick. Hives, high blood pressure, heart disease, inflammation, and struggles with mental health. 

To lay those burdens down, we have to name them first. 

That’s what I want this series to be: a podcast about finding the words to say the things that go unsaid. 

Across four episodes, we’re exploring the silence around violence and racism. And, maybe, we’ll get some redemption, too. 

I’m glad you’re here. There’s a lot more to talk about. 

Next time on “Silence in Sikeston,” the podcast … 

Meet my Aunt B and hear about our family’s hidden history. 

Cara Anthony: I told you what the three R’s of history are, right? 

Aunt B: No, tell me. 

Cara Anthony: So the three R’s of history are, you have to recognize something in order to repair it, in order to have days of redemption. So, Recognize, Repair, Redeem. And that’s what we’re doing. 

Aunt B: Man, how deep is that? 

Cara Anthony: That’s what we’re doing. 

Aunt B: Wow. 

CREDITS 

Cara Anthony: Thanks for listening to “Silence in Sikeston.” 

Next, go watch the documentary — it’s a joint production from Retro Report and KFF Health News, presented in partnership with WORLD. 

Subscribe to WORLD Channel on YouTube. That’s where you can find the film “Silence in Sikeston,” a Local, USA special. 

This podcast is a co-production of WORLD Channel and KFF Health News and distributed by PRX. 

It was produced with support from PRX and made possible in part by a grant from the John S. and James L. Knight Foundation. 

The audio series was reported and hosted by me, Cara Anthony. 

Zach Dyer and Taylor Cook are the producers. 

Editing by Simone Popperl. 

Taunya English is managing editor of the podcast. 

Sound design, mixing, and original music by Lonnie Ro. 

Podcast art design by Colin Mahoney and Tania Castro-Daunais. 

Oona Zenda was the lead on the landing page design. 

Julio Ricardo Varela consulted on the script. 

Sending a shoutout to my vocal coach, Viki Merrick, for helping me tap into my voice. 

Music in this episode is from BlueDot Sessions and Epidemic Sound. 

Additional audio from KFVS News in Sikeston, Missouri. 

Some of the audio you’ll hear across the podcast is also in the film. 

For that, special thanks to Adam Zletz, Matt Gettemeier, Roger Herr, and Philip Geyelin, who worked with us and colleagues from Retro Report. 

Kyra Darnton is executive producer at Retro Report. 

I was a producer on the film. 

Jill Rosenbaum directed the documentary. 

Kytja Weir is national editor at KFF Health News. 

WORLD Channel’s editor-in-chief and executive producer is Chris Hastings. 

If “Silence in Sikeston” has been meaningful to you, help us get the word out! 

Write a review or give us a quick rating on Apple, Spotify, Amazon Music, iHeart, or wherever you listen to this podcast. It shows the powers that be that this is the kind of journalism you want. 

Thank you. It makes a difference. 

Oh yeah … and tell your friends in real life, too! 

Credits

Taunya English
Managing editor


@TaunyaEnglish

Taunya is deputy managing editor for broadcast at KFF Health News, where she leads enterprise audio projects.

Simone Popperl
Line editor


@simoneppprl

Simone is broadcast editor at KFF Health News, where she shapes and edits stories that air on Marketplace and NPR, manages a reporting collaborative with local NPR member stations across the country, and edits the KFF Health News Minute.

Zach Dyer
Senior producer


@zkdyer

Zach is senior producer for audio with KFF Health News, where he supervises all levels of podcast production.

Taylor Cook
Associate producer


@taylormcook7

Taylor is an independent producer who does research, books guests, contributes writing, and fact-checks episodes for several KFF Health News podcasts.

Additional Newsroom Support

Lynne Shallcross, photo editorOona Zenda, illustrator and web producerLydia Zuraw, web producerTarena Lofton, audience engagement producer Hannah Norman, visual producer and visual reporter Chaseedaw Giles, audience engagement editor and digital strategistKytja Weir, national editor Mary Agnes Carey, managing editor Alex Wayne, executive editorDavid Rousseau, publisher Terry Byrne, copy chief Gabe Brison-Trezise, deputy copy chief Tammie Smith, communications officer 

The “Silence in Sikeston” podcast is a production of KFF Health News and WORLD. Distributed by PRX. Subscribe and listen on Apple Podcasts, Spotify, Amazon Music, iHeart, or wherever you get your podcasts.

Watch the accompanying documentary from WORLD, Retro Report, and KFF starting Sept. 16, here.

To hear other KFF Health News podcasts, click here.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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7 months 23 hours ago

Mental Health, Multimedia, Race and Health, Rural Health, States, Missouri, Podcasts, Silence in Sikeston

KFF Health News

KFF Health News' 'What the Health?': Live from Austin, Examining Health Equity

The Host

Julie Rovner
KFF Health News


@jrovner


Read Julie's stories.

The Host

Julie Rovner
KFF Health News


@jrovner


Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

The term “health equity” means different things to different people. It’s about access to medical care — but not only access to medical care. It’s about race, ethnicity, and gender; income, wealth, and class; and even geography — but not only those things. And it’s about how historical and institutional racism, manifested in things like over-policing and contaminated drinking water, can inflict health problems years and even generations later.

In a live taping on Sept. 6 at the Texas Tribune Festival, special guests Carol Alvarado, the Texas state Senate’s Democratic leader, and Ann Barnes, president and CEO of the Episcopal Health Foundation, along with KFF Health News’ Southern bureau chief Sabriya Rice and Midwest correspondent Cara Anthony, joined KFF Health News’ chief Washington correspondent, Julie Rovner, to discuss all that health equity encompasses and how current inequities can most effectively be addressed.

Anthony also previewed “Silence in Sikeston,” a four-part podcast and documentary debuting this month exploring how a history of lynching and racism continues to negatively affect the health of one rural community in Missouri.

Panelists

Carol Alvarado
Texas state senator (D-Houston)

Cara Anthony
Midwest correspondent, KFF Health News

Ann Barnes
President and CEO, Episcopal Health Foundation

Sabriya Rice
Southern bureau chief, KFF Health News

Also mentioned on this week’s podcast, from KFF Health News’ “Systemic Sickness” project:

click to open the transcript

Transcript: Live from Austin, Examining Health Equity

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.] 

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and usually I’m joined by some of the best and smartest health reporters in Washington. But today we have a special episode for you all about health equity taped before a live audience at the Texas Tribune Festival on Sept. 6, 2024. I hope you enjoy it. We’ll be back with our regular panel and all the news on Sept. 12. So here we go.

I am pleased to be joined on this panel by two of my KFF Health News colleagues, Southern bureau chief Sabriya Rice, who’s right here next to me, and Midwest correspondent Cara Anthony, down at the end. We are also honored to be joined by two guests with a lot of combined expertise on this issue, [Texas] Senate Democratic leader Carol Alvarado, who represents the 6th District of Texas, which includes parts of Houston, and Dr. Ann Barnes, president and CEO of the Episcopal Health Foundation, also based in Houston.

We’re going to talk amongst ourselves for the next, I don’t know, 40 minutes or so. Then we will go to you in the audience for your questions. So go ahead and be thinking. I have to say I am personally really excited about this episode because health equity is something I think about a lot, but I’ve never been able to accurately define, even for myself. I know it’s about race and ethnicity and gender, but it’s not just about race and ethnicity and gender. It’s about income and wealth and class, but it’s not just about income and wealth and class. It’s about geography, but not just about geography. And it’s about medical care, but not just about medical care. So I want to kick off this discussion by asking each of you how you define health equity. And why don’t we just sort of go down the row? So we’ll start with you, Sabriya.

Sabriya Rice: Really great question and it gave me a lot of things to think about. And I want to start with a little anecdote from something that happened yesterday evening. I was having a conversation with a group of visitors from South Africa who work for an investigative news site there called The Daily Maverick, and my colleague, Aneri Pattani, who’s also a KFF Health News reporter. We were explaining some of the things about the U.S. health care system and just some basic stuff like how a lot of people can’t afford to just go for preventive care, how you may or may not have access to care in your neighborhood, and what that means in terms of your health outcomes.

And in the middle, they paused us and were like, “Wait a minute, wait a minute. This doesn’t make any sense. We have these things in South Africa.” It’s something you hear regularly from other people who are visiting here and they’re like, “But you’re like the wealthiest country in the world. How do you not have these things?” And I was thinking about that and thinking of, in terms of your question. So, for me, I think of health equity as just creating the opportunity for everyone to be able to achieve their optimal health no matter their background. And I think that’s something we could really work on in the U.S.

Ann Barnes: Great.When I think about health equity, I share a similar definition where folks have a just and fair opportunity to live their healthiest lives. And this is largely from the Robert Wood Johnson Foundation’s definition of health equity. But coupled with that is the requirement to dismantle barriers to health. And so we have to remember that that is part of the equation, not just dreaming that we all have optimal health, but thinking about how we’re going to eliminate the barriers, especially for populations that are most vulnerable.

Carol Alvarado: I think about accessibility and affordability. And if you don’t have those two things in health care, then you create this environment of the haves and the have-nots, those who can afford to have health insurance and those who can’t. Maybe it’s because of their job, their social economic status. And I also think that we have to take partisanship and politics out of health care. I mean, when did that become such a divisive issue that really reached the height during the Obamacare debate and the many, many times to repeal it? And I know we’re going to dive into this a little bit more, but health care and access should never be political.

Cara Anthony: When I think about health equity, I agree with all of the panelists here today, but I’m also thinking about the future and the next generation. I’m a single mom. I have a 7-year-old daughter, and I think about how is she going to be able to live a longer and healthier life than previous generations. I’m going back home tomorrow and one of the first things that I’m going to do is sign my daughter up for a swim lesson, right? That’s health equity because I’m also signing up for a lesson as well. Why? Because I never learned to swim. It’s about each generation doing better. And why didn’t I learn to swim? Because my parents were born in 1948 in the South and did not have access to swimming pools. So it’s those daily practical applications that I think about when I think about health equity. So yeah.

Rovner: Sen. Alvarado and Dr. Barnes, I want to talk about Texas a little bit since, obviously, we’re sitting here. Texas is, we try not to think about just insurance when we talk about health equity, although it’s a big deal, and in Texas it’s still a big deal as opposed to a lot of other states. What impact does Texas’ failure to, so far at least, expand Medicaid have on health equity in this state?

Barnes: Well, we know that health care and access to health care is critically important to health. It accounts for 20% of a person’s health, and nonmedical drivers account for the other 80%. But 20% is important. We still have the highest rate of uninsured. So that means that there are parts of our community that can’t get the preventive care that they need, that can’t talk to people who might connect them to social services to support their nonmedical needs. And so the larger conversation is about increasing health coverage overall in Texas. And certainly expansion of Medicaid is one piece of that. About 5 million people are uninsured right now in our state, and so we’ve got a lot of ground to cover. Affordable Care Act is one way, Medicaid expansion is another. And so a lot of work to do, for sure.

Alvarado: And I’ll pick up where you left off. Medicaid expansion has been, believe it or not, a hot political hot potato here in Texas. I’ve been filing, along with many of my colleagues, bills every session since 2009, maybe. We can’t get hearings. And no one really gives you a good explanation why. They’ll have things that really don’t make a lot of sense that there are too many strings attached. Well, somehow 40 other states don’t have that problem.

And we’ve seen that the cost that we’re leaving on the table, millions of dollars. I think the last number I saw was 2023, maybe $11 billion just there on the table; other states are utilizing it. And then here in Texas, it’s kind of complicated. I’ll just give you the elevator speech on that. But they kept the Medicaid enrollment going during the pandemic, and then afterwards they did this winding, what they called winding down, and almost 2 million people were left without Medicaid. And a good portion of that are children, and a good portion of those children are Black and brown kids who are already living in environments where they don’t have access to green space or grocery stores, fresh fruits and vegetables. So you pile all of that together and that’s why we are in this place of many uninsured, almost twice the number of the national rate, which is at 8[%]. We’re at 17[%]. Yeah, everything’s bigger in Texas especially the number of uninsured.

Rovner: So, Dr. Barnes, I want you to talk about what it is that your foundation does. I find it fascinating that even though you would think that you’re all about medical care, you’re really not all about medical care, right?

Barnes: No, that’s right. So we are committed to promoting equity by addressing health and not just health care. And so we use our resources in partnership with community members and organizations and change-makers to address factors that occur outside of the clinical setting and the doctor’s office. And representative [Sen.] Alvarado listed so many of them: housing, food security, employment, education. All of these are critically important to health. And so we use our resources to help address those needs because we know that that will set people up for a healthy life and not just a sick life that ends them up in clinical care at the very tail end of their illness. One of the things I wanted to share, I’m a physician by training, in internal medicine and primary care, and my patients taught me so much when I saw them and I prescribed medicines for diabetes or high blood pressure. It was the stories about their lives outside of the clinic that really helped me understand what was impacting their health, which is why I got into this space of health and not just the clinical side.

Rovner: Cara, you’re about to debut a project that you’ve been working on for four years that has to do with exactly this, with sort of the nonmedical implications of other things and the lack of health equity. So why don’t you tell us a little bit about it?

Anthony: Yeah, so coming up next week, we’re going to premiere a new podcast, and also it’s a documentary film, called “Silence in Sikeston.” It focuses on police violence and police killings, but looking at them not as crime stories, but more as a public health threat. Also looking at the lynchings of yesterday as a public health threat. Maybe people didn’t use those terms back then, but certainly we recognize them as such now.

And so I hope everyone checks this out because it really talks about how racism and chronic stress are linked. And so oftentimes it can weigh not only on your mental health — anxiety, depression, you can become suicidal because of these things — but also you can have physical health effects as well, higher rates of high blood pressure, cancer, et cetera. And so I’ve been traveling for the last four years to Sikeston, Missouri. It’s a small community in rural Missouri where there was a man who was lynched there in 1942. His name was Cleo Wright. This is America’s first federally investigated lynching, the first time the FBI decided to look at lynching as a federal crime. They came to Sikeston, Missouri. But the story has never really been told and not in this way, not looking at it as a public health story, because as public health reporters we’re tasked with looking at what makes a community sick, what’s harming a community, and sometimes that can be something like lynching, something like police killings. And so we’re looking at that head-on and talking about the health impacts there.

Rovner: And Sabriya, obviously this is a big project that we’ve been working on, but we’ve been working on a lot of other health equity stories that you’re sort of in charge of. So why don’t you tell us about some of those?

Rice: Yeah, certainly. And it’s a great parallel to the work that Cara’s been doing. I came to KFF in 2022, and my charge was to start up a Southern bureau and look at the health equity disparities that happen across the South. So my team ranges from Texas to Florida up until North Carolina, and we meet weekly and have conversations. And one thing I was constantly hearing from the reporters — I’m not a policy expert and I’m not a statistician, but I’m a people person and I listen to people — and my reporters were saying over and over again, “Yeah, we spoke to this expert about Medicaid expansion, but they were like, ‘Yeah, we could do that, but it’s not going to stop the root of the problem, which is racism.’”

“Yeah, we wrote about maternal mortality or infant mortality, but still at the root of this is racism.” So that term kept coming up. And so we decided this year to take a look at systemic racism in the health care system, and our series is called “Systemic Sickness,” and it looks at some of the things that Cara talked about, including policing, but we also look at redlining or the history of redlining, of public housing challenges. We’re looking modern-day, like attacks on diversity, equity, and inclusion programs in education, specifically the field of medicine. So that’s the nature of our project that we have for this year. And it’s been just a real fascinating experience.

Rovner: I think I’ve heard this come up a couple of times in the panels we’ve had this morning about some of the other issues that really impact this in a bigger way than many people think. And I think housing is definitely one of those. You talked about redlining. A lot of this is historic racism and literal redlining: “You cannot live here. If you live here, you cannot get a mortgage.” There’s been a lot of that. How significant, I assume, the problem is here in Texas?

Barnes: Yeah, it is significant in a lot of those racist structures. We continue to experience the aftereffects of those. Even today, those neighborhoods are still under-resourced, and that includes, like you mentioned, grocery stores, safe spaces to play, green spaces, good transportation options. And so those old and, I suppose, acceptable forms of structural racism that were enacted are still playing out today in the health of people.

Alvarado: It’s very important. And housing doesn’t get a lot of attention. It’s not a very glamorous or sexy issue, but I’m glad to hear presidential candidate Kamala Harris, she talked about housing and what she would like to see to build more affordable housing, or I guess we’re calling it “workforce housing” now. And then our state comptroller, Glenn Hegar, recognizing how many people we have moving to Texas all the time. And to accommodate that, we’d need about 300,000 new units or housing. So people don’t have a place to lie their head that’s comfortable and a place to cook meals. And then if they don’t have those safety nets, then their last concern is probably, “Oh, am I getting my workout in today?” Or “Am I eating enough fruits and vegetables?” when they’re in survival mode.

Rice: And I’ll piggyback on what representative [Sen.] Alvarado said. It’s hard for people to see how this kind of plays out in real time. And two of our reporters on the Southern team just recently looked at a community in Savannah, Georgia, called Yamacraw Village. It’s a public housing community that started around World War II. And historically, at that time, the residents were white. Disinvestment happened within this community over the years and the population of the community changed.

So now it’s a predominantly Black and Latino community, but what you see is a large amount of disinvestment. People can’t get things fixed, so you’re living in very unhealthy housing, when you do have housing. There’s no playgrounds, there’s no green space, there’s an extreme amount of violence. But one man told our reporters, “The walls sweat like working men.” This person moved into this community and got vouchers to be able to live there and immediately developed asthma and has been taking medication even years after he left the community. So when you think about how the system is harming people, these communities are there and they’re not being invested in. Instead, people are given things like Section 8, if they can get the vouchers, and then if you can find affordable living that will take your Section 8 voucher. So it’s a really big problem. And housing is often not talked about as a public health crisis.

Barnes: Absolutely. And not just the place that you lay your head, but high-quality housing, not substandard that actually can impact your health.

Rovner: One of the things we’ve seen, I guess in the last couple of years, are these extraordinarily hot summers. And I know the government has always helped underwrite heating assistance in the winter, but apparently air-conditioning assistance is not considered of the same importance. I just read Phoenix has been 100 degrees every day for the last hundred days. I know that here in Texas you’ve had some pretty extended heat waves. I mean, how big an issue is heat as a public health and equity issue?

Alvarado: It’s a big problem, and especially when we’ve had things like power outages, storms that we had very close to one another. We had the derecho in May and then we had followed by the Hurricane Beryl, and that was tough. I mean, people were out of power anywhere from a couple of days to 10 days, and for some, it’s life or death, especially if they have medical equipment that they have to be hooked up to. We’re going to be tackling some of those issues in this session, but our city does a good job in our county of opening cooling centers so that people have a place to go and retreat and charge their devices. But the weather is getting much more turbulent. The summers are getting hotter, the hurricane season is more active. And until people realize that there’s a reason all this is happening and people don’t want to talk about it or put policy forth that addresses what’s taking place in our environment. So they go hand in hand.

Barnes: One of the other things, as we talk about communities where there isn’t investment, is that there are these heat islands, and typically they are where people are low-income communities of color where simple things like trees being planted that could cool the temperature in the area, these neighborhoods don’t have those amenities. So there are efforts in Texas and in Houston to try to green up some of those communities, but it requires investment and attention and acknowledging that we have these disparities across the community.

Rovner: Yeah, there was a study, I think it was in Baltimore a couple of years ago, where the temperature differential was like 15 degrees. I mean, it would be 85 in the suburbs and it would be 100 in some of these sort of concrete jungles downtown where the buildings hold onto the heat. And, of course, those are places where people live and often can’t afford their utilities, and obviously their utility bills would be higher because it’s going to cost more to cool those places.

Barnes: And as representative [Sen.] Alvarado mentioned, heat, when you have chronic conditions, so the elderly in particular, these are the communities that have the greatest burden of those conditions. And so it’s particularly alarming. That need is there and we really have to pay attention to it.

Rice: One of the things we just looked at in a story was this idea of energy poverty. And one interesting factoid that I learned from that that I was unaware of myself is the idea that many of our federal policies tend to focus on cold weather and that this idea, in federal and state, so for example in North Carolina where the story was centered, there are requirements that apartments and other kind of housing that they mandate that you have heat in the winter. It’s not the same for AC in the summer, and that’s probably something that should be looked at.

Rovner: I want to talk about women. When we talk about health equity differences between men and women, where one of the first places we saw before the Affordable Care Act, insurers were allowed to charge women more simply because they were women and they lived longer and had more health expenses associated with being pregnant and having children. That was eliminated. But, obviously, there are still a lot of inequities between men and women and it’s there. I know that they’re exacerbated by race, but it’s not purely race. I mean, how big an issue is this still? Obviously, reproductive health in general, abortion in specific, is the central health issue in this year’s campaigns. So where does it fall in the pantheon of health equity?

Alvarado: I think if we had more women elected to office, definitely in Texas and in statewide positions, that things like Medicaid would pass, expansion of Medicaid. And it does matter who is at the table, who is making the decisions. And this happened just on one side of the aisle, but just 12-month postpartum for women, so that they can take advantage of Medicaid, and it finally got done. But that’s the only piece that we’ve been able to do. And they were two women, Democrat and Republican, Toni Rose and Sen. Huffman, who led that effort. And I just know if we had more women in the right places, that issues like health care wouldn’t be so partisan and divisive.

Barnes: Yeah, I was going to say the same thing. We finally got 12 months of coverage postpartum, and it’s really unfortunate that we have to piecemeal the care that women need. I think about the fact that we expect good pregnancy outcomes when someone hasn’t had care until they’re pregnant, and up until recently, only eight weeks after they were pregnant. And so yeah, there are a lot of disparities, and for many women being pregnant is their ticket to Medicaid. And so it just perpetuates this fragmented continuum of health, and women are falling out of it regularly.

Alvarado: And especially with women of color, 64% of Latinas and 62% of African American women will at some point be on Medicaid.

Anthony: I just want to chime in here too. You talk about reproductive rights. I considered, Julie, writing a personal essay about, at the time I was 35, I went on … I’m only 37 now, but as a Black woman in the U.S., going on birth control for the first time in my life. Now, I mentioned I’m a single mom, so that wasn’t always my story, but I think we’re in an era of progress and education that is still really, really important. So I just wanted to share that.

Rovner: So I want to talk a little bit about the actual inequities within medical care. One thing, Stat News has a wonderful story that’s part of a series they’re starting this week on algorithms that are embedded into care — when doctors make a diagnosis and then the algorithm comes up and shows all the things you should consider in deciding what kind of treatment. And a lot of these now have: Is the patient Black? And some of them, I think, were originally, I assume most of them, were originally born out of some sort of thought that there’s a differential in risk depending on skin color, but obviously a lot of them … have been completely overturned by science and yet they’re still there. What impact does embedded racism in medicine, in general, have on health equity?

Barnes: Yeah, specific to that, in particular, what it resulted in is individuals who had evidence of risk, because they were Black there was a higher threshold that had to be crossed before they got additional testing or additional treatment, which means that there are populations of people who didn’t get timely care because of those embedded algorithms. One of the other things, there’s not an overriding body — I guess CMS could be that overriding body — but right now no one is standing up saying, “Absolutely you cannot use race-based algorithms.” And so it’s really up to individual health systems. States could implement penalties if you use them, but right now it’s up to an individual institution, and it takes a lot to undo an algorithm and change an electronic medical record. But we are at the threshold, I think, of that beginning to happen.

Anthony: And it’s such a common issue. I spent the last few years looking particularly at kidney disease testing, and if you put a Black person’s kidney on a table and you put a white person’s kidney on the table, you would not be able to tell the difference. People really need to understand that race and biology are not the same, but for years, I mean decades, people have mixed this up and it has delayed care from people who are not getting the treatment that they need.

We wrote a story a couple of years ago about a Black man who needed a kidney, a white woman read the story and decided to donate a kidney to him, but that’s not everybody’s case. I can only write about so many patients that are in that same scenario. And so there’s still a lot of work that needs to be done, but progress is being made. The hospital in particular that we were looking at in St. Louis, they’ve made some policy changes since we published that particular article, but we still have a long way to go. I can’t say that enough. Race and biology are not the same.

Rovner: I mentioned at the top geography, and we talk about people who are grouped together because they have to be, but it’s also about where people decide to live, in rural versus urban. I mean, how can we look population-wide and try to even out, I mean, we talk constantly about the closures of rural hospitals and the difficulty of getting care in far-flung areas, and obviously Texas has a lot of far-flung areas, I know. That is another issue that sort of plays into this whole thing, right?

Alvarado: Oh, absolutely. And one of the arguments, again, this all keeps going back to Medicaid expansion, but you’re talking to my colleagues on the other side of the aisle, I said, your districts, some of your rural districts are suffering the most. Hospitals have shut down. They have to drive to the next big city. It might be Houston or Dallas or San Antonio, but it has, I think, disproportionately hurt rural areas. And until folks want to own that, embrace that, and try to fix it, we’re going to continue to be in this place and probably the gap will widen even more.

Rice: And I’d say we saw this kind of play out in Georgia this week. I live in Atlanta, and there was the unfortunate school shooting incident that happened there. And the community that that school is in had no hospital in that area. So the closest place would’ve been 40 miles away in either direction to Athens, Georgia, which is about 40 miles from the Barrow County and then Atlanta. So even in an incident like that, just coordinating to get people treatment in a major incident is just another example of why we need to do something, right? It’s not just Black communities or Hispanic communities. I think it’s all of us and any given moment may need access to care. And if you think about it, in light of that, 40 miles is no easy feat on Atlanta highways in rush-hour traffic or even being airlifted, it’s still a distance and you have a small window of time to save a life.

Barnes: And there’s been specific conversations in Texas about access to maternal health care in rural communities. And so again, the distance that someone would have to drive is hard for many of us to imagine, especially in a time of crisis.

Rovner: One of the other continuing issues when we talk about health equity is the desire of people to be treated by people who look like them or people who have similar backgrounds to them. That’s obviously been an issue for years that the medical community has been trying to deal with. I want to ask specifically what impact the Supreme Court’s decision banning affirmative action is going to have on the future of the medical workforce and the few strides that have been made to get more people of color, not just into medical school, but into practice.

Rice: I’d say that was pretty immediate, and especially in some of our Southern states, given the history. But I think there were immediate bans on DEI programs or dismantling of those at schools across the South. I can think of Alabama, Mississippi, Texas, even Georgia introduced a bill. It didn’t pass, but I think we saw that happen pretty immediately. And the doctors that at least reporters on my team have spoken to have said, even in their programs, they can’t even say, “We’re trying to increase the number of Black doctors or Hispanic doctors or Native American doctors.” You can’t target those groups to come to special programs, to have access to visitations to schools or that sort of thing. You can’t even say it. So they’re having to kind of circumvent how they reach people to increase the low numbers of doctors of these ethnic groups.

Alvarado: I think we’ve only begun to see the consequences that have taken place because of that. When you mentioned the medical center, we have people that come from all over the world and having physicians that they can relate to or just speaking the language, 48% of people from Houston speak other languages other than English at home. So Houston is known for being very international, very diverse, and it’s only going to continue to grow. So having the language barrier also contributes to many other issues regarding your health. But having that comfort with someone that understands your background, may understand your challenges, that’s important. And I don’t think that the people who were coming up with DEI legislation here in Texas and, those things don’t cross their mind because they’re shortsighted. They’re trying to check a box or get that “A-plus” on their whatever scorecard by whatever group in their party.

Rovner: But people think, well, a doctor is a doctor is a doctor. Why does it matter if that doctor, if you’re able to relate to that doctor, how important is it really to have a medical community that looks like the community it’s serving?

Barnes: Yeah, I would say it’s a huge trust issue. I remember having patients in my practice, African American patients, and there was a wonderful trust that we had with one another. And then I would refer them to a specialist who didn’t look like them, and they would ask me questions, “Do you really think they’re going to do the procedure that they said?” And I was just thinking, “Oh my gosh, I am taking for granted that someone would trust me.” And when we think about how we make recommendations to patients, if the trust isn’t there, why would they listen to what you had to say? And then that will, of course, put you at a disadvantage from a health perspective. And in terms of eliminating affirmative action, I don’t know the medical school data, but a lot of higher education institutions are already reporting lower numbers in their incoming classes. And that certainly is going to be the same in medical schools, nursing schools, PA schools.

Rovner: I did have in my notes that medical schools are freaked out by this.

Anthony: And it’s really …

Barnes: Absolutely.

Anthony: And what you’re talking about, and I’ve written a lot about this topic, and just to name it, we’re talking about “culturally competent care,” and culturally competent care is really, really hard to find because the numbers are low, because there has been a shift. But I think the conversation is also shifting towards culturally humble care or cultural humility in health care. So even if I can’t find a doctor who looks like me, I need someone who’s culturally humble to say, “You know what? I don’t understand everything that you’re going through as a Black woman raising a child in America, but I can admit that, I can say that out loud, and I can maybe direct you towards someone who can be more helpful. Or maybe we could just have a really candid conversation about that.” And so I just want to give people the terminology that I think could be useful if you want to learn more.

Rice: We also just did a story looking at colorism in the U.S. and the impact that that has on people. Interviewed a woman, for example, who had been bleaching her skin for all of these years, had these side effects from that, but clinicians weren’t catching it. They didn’t know to look for specific things. So there were mental health challenges there because of feeling unhappy being in her own body, but there were also manifestations on her physical health because the chemicals that she was introducing were causing harm. So I think that kind of cultural competence, someone that looked like her and could relate to her background might be like, “Wait a minute, is this what’s happening here?” And that’s what happened in the case of that particular patient.

Rovner: So at our session this morning on why does care cost so much? My colleague Noam Levey talked about something he calls a culture of greed in health care, it does seem as if every aspect of the system is or has been monetized. I mean, it really is all about the money. How does that impact health equity? I mean, you could think that if the incentives were in the right place, it might be able to help.

Alvarado: And it drives up the cost of insurance too. I mean, if you’ve ever had a loved one in the hospital, they don’t want you to bring your medications from home. So you have to take what they have there. And it is the same thing, but it’s very expensive. You can buy a bottle of Advil for 5, 6 bucks; each pill is about that much, and then it drives up cost of insurance, and it has an economic impact that trickles down to the consumer.

Barnes: And then it becomes a barrier. So if you are paying out-of-pocket and things are incredibly expensive and you also have to buy food and pay your rent, you may forgo or delay care, which again is going to leave you in a worse situation from a health standpoint and just perpetuate the disparities.

Rovner: Now we have managed-care companies who serve not just most of the Medicare population, but most of the Medicaid population, who get paid for presumably the incentive there was, you’re going to take care of these people and we’re going to pay you, and the more people you can find to take care of, the more we’re going to pay you. And in theory, they have adequate networks where people can actually find care, which is not always the case with Medicaid. It’s hard to find providers who will take Medicaid. I’ve started seeing ads for managed-care companies for people who are eligible for both Medicare and Medicaid, the “dual eligibles.” They don’t call them that, but it’s like, “Wow, I’m looking at TV ads for dual eligibles.” Somebody must be making some amount of money off of these people. Is anything good coming from it?

Alvarado: I mean, the pharmaceutical companies are raking it in pretty good. And in some countries you can’t even have direct promotion for pharmaceuticals from the pharmaceutical company to the consumer.

Rovner: Most other countries.

Alvarado: Yeah, except I mean every commercial. I mean, you pick your drug, what is it, Skyrizi or Cialis, whatever. I mean, it’s out there.

Rovner: Yes, we all know the names of the drugs now.

Alvarado: Something for everybody.

Rovner: I’m going turn it over to questions in a minute, but before I do, I don’t want this to be a complete downer. So I would like each of you to talk about something that you’ve seen in the last year or two that’s made you optimistic about being able to at least address the issue of health equity.

Rice: I mean, the fact that we’re having these conversations more, I think, is something that brings optimism, for me. I don’t remember my family having these conversations as a kid. It was just like, “Well, this is just the way it is. Or “This is how the system is.” And I think it’s positive that we’re having conversations not just about how the system is currently, but about changing it, as Cara mentioned, for the next generation.

Barnes: As a philanthropy, I can talk about some specific investments that we’ve made that have allowed community health workers to work with women throughout their pregnancy period. And so in a small way, for those women, we have increased the opportunity for them to have a healthy outcome. But we’ve also done some policy work. We were part of a large coalition of folks pushing for 12 months of Medicaid coverage postpartum. And those system-level changes affect millions of Texans. And so again, we felt that was really an important way to change the health equity equation.

Alvarado: And thank you for your work on that. Many of us on my side of the aisle have been filing those bills to get it extended to 12 months. But again, everything goes back to politics. They weren’t going to let somebody in the minority party carry it. And at that point, you don’t care who gets the credit, just get it done. Or as we say in Texas, “Git-er-done” and take care of folks. But another thing that we’ve been talking about on our side of the aisle was the tampon tax, the pink tax, and wow, all of a sudden my colleagues on the other side thought, “Oh, that’s a good idea.” And so anyway, we didn’t get to carry it. They passed it, OK, it’s done. So we’ve got to play this game, dance this dance here, and we’ll do it. The most important thing is to make things accessible and affordable to people.

And one of the other things too, we didn’t get to talk about this much, but when you talk about the environment and health impacts, my district has so many concrete batch plants. And so we are seeing more people become aware of particulate matter and the negative impact that these facilities have. And they’re almost all, I’d say 99% all, located in African American and Latino neighborhoods. And Harris County has the largest number of concrete batch plants in any other county in Texas. And a third of those concrete batch plants are walking distance to schools and to day cares. We have more work to do in this area, but at least now the public is holding people accountable and we’re putting more pressure on the agencies that regulate these facilities.

Anthony: We often think about data and there’s negativity associated with that. But one thing that I’ve learned, particularly in the last four years, is that there’s good data too. There’s change that is happening, right? I mentioned early on in our conversation about the swim lesson with my daughter, and that’s progress, right? There’s institutional change happening as well. We talk about the algorithms and the issues there, but we know that there are institutions that have said, “Yes, this is a mistake.” I have concerns, and this is another conversation about what’s going to happen with AI. But I think that there are positive ways to look at that as well. So change is happening, and we have to think about also moving forward, and we want to tell those stories too.

Rovner: All right, well, I’m going to turn it over to the audience now. I see we already have someone waiting to ask a question. Please, before you ask your question, tell us who you are and where you’re from and please make it a question. Go ahead.

Abimisola: Hi, my name is Abimisola. I am from Nigeria, but I live in Austin, Texas. My question is about education. I feel like a big part of access and equity is education. So what are we doing to let people know that there are some services that are available to help them access the care that they need? I imagine that as, I guess, working through the pandemic, health literacy is not really a thing in the public. And so what are we doing to let people know that some of these services exist? And then also on the cultural humility end of things, what are we doing to make sure that providers are aware of this gap and how can they be helpful in their own way to make sure that equitable care does exist when people come in?

Barnes: So I think that we are at a moment of awakening when it comes to recognizing that you need trusted messengers in communities to actually engage in conversations about navigating health care systems or engaging in preventive health measures. Community health workers are really starting to have their day, and there is recent legislation that will actually allow them to be reimbursed for case management services related to their care of pregnant women. And so we are in a moment, that same legislation will also cover doulas and their case management services. But I think to your point, education, health literacy, having someone you trust who can walk you through that process is so critically important and those caregivers are finally getting the recognition that they deserve and being elevated and reimbursed. And so I think that that is a great step.

Linda Jackson: Hello, thank you for the information that you’ve provided. So I’m Linda Jackson and I’m with Huston-Tillotson University, which is a historically Black university a few miles from here. And I want to talk about the speed. One thing that happened again during the coronavirus is that because the university had systems in place, for example, the university was able to move from on-campus, on-ground, to online almost immediately with all of those funds and programs that were available. We’re in that same situation now with what we’re experiencing now, we have an increase in the number of students who want to attend college, an increase in our enrollment. We are a pipeline for the health industry, for some of the issues that we have to deal with, but the issue is that we can move quickly, but to get to all of those entities that are out there that can provide the funding that’s needed.

We have students we turned away who are waiting to get into college, and they’re interested in computer science and they’re interested in the health care industry and they’re interested in all those fields, but it’s the speed. We are here waiting, but the speed for which all of those resources have to come into place. And for example, we had entities who came to us with a doula program, with a doula idea, and we offer a certificate in the doula program to ensure that there are more doulas to provide that culturally sensitive care. And so my question is we’re here. We’re waiting. The resources need to come faster. And so I guess that’s a statement as opposed to a question.

Rovner: But thank you for raising the topic.

Barnes: I will just say, well, first off, my mother and my aunt are both graduates of Huston-Tillotson. So very excited to have you here. I think connecting the industries that need the workforce with the institutions who can provide the training is a key connection that we haven’t figured out how to do well because that’s where your resources would come to be able to support students getting trained to then fill the jobs where we have needs in the health care setting.

Rovner: And this is not just a health equity issue, this is the entire health system writ large.

Barnes: Absolutely.

Rovner: The difficulties with matching workforce needs with patient needs.

Robert Lilly: Good afternoon. Thank you very much for this lively conversation. My name is Robert Lilly. I am a criminal justice participatory defense organizer with Grassroots Leadership, and I’m also justice-impacted, formerly incarcerated, 54 years old with 21 years of my life spent in some institution or another. I want to just comment or not comment, but inquire from the two points that were made about equity. You mentioned that you wanted to, equity was about optimal health, no matter the background of the individual and also to eliminate barriers, especially for populations that are most vulnerable.

Texas has over 110 prisons, 135,000 people currently incarcerated, 600,000 every year exiting the system. Medicaid expansion is a challenge in Texas. My question before you is, in this era of mass incarceration, what options do we have? If policy can’t fix this problem, what other options exist? With the creative minds that you have, the thoughtful insights that you’re gaining from your research and reflection, how can you advise us to move, if our legislature won’t move? Do we depend on them alone to solve these problems, or is there an alternative route that supersedes them? And the last thing I’ll ask is how much of what we’re experiencing today, and we know America’s been historically racist, but how much of what we experiencing is a backlash to George Floyd?

Rovner: Oh, excellent question. Somebody want to take him on?

Anthony: I really think about if policy can’t do it, what can? And that’s where I think about for me, often it’s the institution of the Black family and starting young, what conversations do we need to have with our children as we move forward? That’s one thing that I, in particular, think about because I really think it comes down to literacy, education, being made aware, and also thinking about what can we do as individuals? But it really requires institutional change. I don’t want to act like that’s not at the core of the issue, but really want to talk about our future a lot and think about our future a lot. And so I think it starts at a really young age.

Rice: I wish we could tackle the whole iceberg all at once and just tear the whole thing down and start over. But the reality is we have to chip at it. And I think as we continue to do that, I think it starts to dismantle. And I don’t know that that offers much hope, but I think it’s kind of where we’re at and what we have to do is to keep moving because we wouldn’t have had this progress without that kind of fight.

Rovner: But … go ahead.

Rice: And vote.

Carley Deardorff: Hi, y’all. My name is Carley Deardorff, born and raised in Texas. I have lived in Texas my whole life, except I ran away to Spain for a little bit. Born in Lubbock, been in Austin for about 15 years now. I want to say one, thank you so much for your question previously. My question involves both formerly incarcerated but also aging. So aging parents, aging families. My partner and I were both raised by single moms, and so the outcomes for them, health-wise and also financially in terms of retirement and things like that are very, very slim. And so now in this next phase of life, navigating equity and health outcomes for them, it’s really scary because I don’t know. So before I cry, what do y’all have as opportunities and resources as you help someone age, and what that can look like in the space of life?

Barnes: So, thank you for being so vulnerable in talking about how incredibly challenging navigating the health care system and the systems that address nonmedical factors are for individuals. I don’t have an easy answer. There are organizations, and some that we have funded, that provide navigation services so that folks who know how to walk their way through these complicated systems can be helpful and maybe we can talk offline after we’re done. Again, they rely on trusted messengers in the communities who know what’s going on in the environment and then can actually help with the complicated side of things as well. And I think that’s probably the best bet for traversing something that doesn’t have to be as complicated as it is, but it is what it is at this point.

Meer Jumani: Do we have time for one more?

Barnes: We do.

Jumani: Perfect.

Rovner: Go ahead.

Jumani: So Meer Jumani, I work as a public health policy adviser to Commissioner Adrian Garcia, Harris County, Precinct 2. Sen. Alvarado’s District and Precinct 2 overlap a ton, but Precinct 2 has approximately 1.1 million constituents, of which 65% are Hispanic. We also have some of the most vast health disparities ranging from the highest mortality rate to the lowest home ownership rate. We touched on that amongst others, and despite launching programs ranging from free community-based clinics to lead abatement programs, we see a trend that these are most underutilized by the most vulnerable populations. So my question is, can you speak to what measures can be taken or what folks are not doing to change the mindset of these populations from a curative mindset to a preventative mindset?

Rice: I think it’s, as you mentioned before, trust, right? Those community navigators and making sure they’re out there giving voice to the community and sharing what resources are there. During covid, there was a community in northeast Georgia with a large immigrant population, and they actually ended up having some of the lowest rates of covid for the state because of those community navigators. They really hit the ground and it was kind of amazing what they did, going door to door if they had to, having weekly events and having conversations, making screenings accessible to everyone, and having navigators that spoke various different languages. I think those kind of things continue to help with that kind of outreach.

Anthony: I totally agree. And acknowledging painful history too. I think we have to realize who is tasked to do the fixing, and are we really giving agency and empowering those that need help the most? I’m thinking about particularly in Sikeston, Missouri, where the police chief tried to institute a program where people were to come, particularly Black residents in town. He wanted to have meetings with them and have conversations, but it just didn’t take off. But part of the reason why is because the level of mistrust, but also some acknowledgment of the history of racial violence that had gone on in the past in that community that people were still trying to heal from today. So I think that there’s so much work that has to be done in institutions. One of the first steps that they can take is acknowledging painful history as a way to move forward because we have to acknowledge our pain to have some joy too.

Rovner: I think that’s a wonderful place to leave it. I want to thank our panel so much and thank you to the audience for your great questions.

I hasten to add, if you enjoyed the podcast, you can subscribe wherever you get your podcasts. We’d always appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our technical guru back in Washington, D.C., Francis Ying, and our editor, Emmarie Huetteman. And thanks to the kind folks here at TribFest for helping us put this all together. We’ll be back in D.C. with our regular panel and all the news on Sept. 12. Until then, everyone, be healthy.

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7 months 1 day ago

Multimedia, Public Health, Race and Health, States, Disparities, KFF Health News' 'What The Health?', Podcasts, texas

KFF Health News

Breast Cancer Rises Among Asian American and Pacific Islander Women

Christina Kashiwada was traveling for work during the summer of 2018 when she noticed a small, itchy lump in her left breast.

She thought little of it at first. She did routine self-checks and kept up with medical appointments. But a relative urged her to get a mammogram. She took the advice and learned she had stage 3 breast cancer, a revelation that stunned her.

Christina Kashiwada was traveling for work during the summer of 2018 when she noticed a small, itchy lump in her left breast.

She thought little of it at first. She did routine self-checks and kept up with medical appointments. But a relative urged her to get a mammogram. She took the advice and learned she had stage 3 breast cancer, a revelation that stunned her.

“I’m 36 years old, right?” said Kashiwada, a civil engineer in Sacramento, California. “No one’s thinking about cancer.”

About 11,000 Asian American and Pacific Islander women were diagnosed with breast cancer in 2021 and about 1,500 died. The latest federal data shows the rate of new breast cancer diagnoses in Asian American and Pacific Islander women — a group that once had relatively low rates of diagnosis — is rising much faster than that of many other racial and ethnic groups. The trend is especially sharp among young women such as Kashiwada.

About 55 of every 100,000 Asian American and Pacific Islander women under 50 were diagnosed with breast cancer in 2021, surpassing the rate for Black and Hispanic women and on par with the rate for white women, according to age-adjusted data from the National Institutes of Health. (Hispanic people can be of any race or combination of races but are grouped separately in this data.)

The rate of new breast cancer cases among Asian American and Pacific Islander women under 50 grew by about 52% from 2000 through 2021. Rates for AAPI women 50 to 64 grew 33% and rates for AAPI women 65 and older grew by 43% during that period. By comparison, the rate for women of all ages, races, and ethnicities grew by 3%.

Researchers have picked up on this trend and are racing to find out why it is occuring within this ethnically diverse group. They suspect the answer is complex, ranging from cultural shifts to pressure-filled lifestyles — yet they concede it remains a mystery and difficult for patients and their families to discuss because of cultural differences.

Helen Chew, director of the Clinical Breast Cancer Program at UC Davis Health, said the Asian American diaspora is so broad and diverse that simple explanations for the increase in breast cancer aren’t obvious.

“It’s a real trend,” Chew said, adding that “it is just difficult to tease out exactly why it is. Is it because we’re seeing an influx of people who have less access to care? Is it because of many things culturally where they may not want to come in if they see something on their breast?”

There’s urgency to solve this mystery because it’s costing lives. While women in most ethnic and racial groups are experiencing sharp declines in breast cancer death rates, about 12 of every 100,000 Asian American and Pacific Islander women of any age died from breast cancer in 2023, essentially the same death rate as in 2000, according to age-adjusted, provisional data from the Centers for Disease Control and Prevention. The breast cancer death rate among all women during that period dropped 30%.

The CDC does not break out breast cancer death rates for many different groups of Asian American women, such as those of Chinese or Korean descent. It has, though, begun distinguishing between Asian American women and Pacific Islander women.

Nearly 9,000 Asian American women died from breast cancer from 2018 through 2023, compared with about 500 Native Hawaiian and Pacific Islander women. However, breast cancer death rates were 116% higher among Native Hawaiian and Pacific Islander women than among Asian American women during that period.

Rates of pancreatic, thyroid, colon, and endometrial cancer, along with non-Hodgkin lymphoma rates, have also recently risen significantly among Asian American and Pacific Islander women under 50, NIH data show. Yet breast cancer is much more common among young AAPI women than any of those other types of cancer — especially concerning because young women are more likely to face more aggressive forms of the disease, with high mortality rates.

“We’re seeing somewhere almost around a 4% per-year increase,” said Scarlett Gomez, a professor and epidemiologist at the University of California-San Francisco’s Helen Diller Family Comprehensive Cancer Center. “We’re seeing even more than the 4% per-year increase in Asian/Pacific Islander women less than age 50.”

Gomez is a lead investigator on a large study exploring the causes of cancer in Asian Americans. She said there is not yet enough research to know what is causing the recent spike in breast cancer. The answer may involve multiple risk factors over a long period of time.

“One of the hypotheses that we're exploring there is the role of stress,” she said. “We're asking all sorts of questions about different sources of stress, different coping styles throughout the lifetime.”

It’s likely not just that there’s more screening. “We looked at trends by stage at diagnosis and we are seeing similar rates of increase across all stages of disease,” Gomez said.

Veronica Setiawan, a professor and epidemiologist at the Keck School of Medicine of the University of Southern California, said the trend may be related to Asian immigrants adopting some lifestyles that put them at higher risk. Setiawan is a breast cancer survivor who was diagnosed a few years ago at the age of 49.

“Asian women, American women, they become more westernized so they have their puberty younger now — having earlier age at [the first menstrual cycle] is associated with increased risk,” said Setiawan, who is working with Gomez on the cancer study. “Maybe giving birth later, we delay childbearing, we don't breastfeed — those are all associated with breast cancer risks.”

Moon Chen, a professor at the University of California-Davis and an expert on cancer health disparities, added that only a tiny fraction of NIH funding is devoted to researching cancer among Asian Americans.

Whatever its cause, the trend has created years of anguish for many patients.

Kashiwada underwent a mastectomy following her breast cancer diagnosis. During surgery, doctors at UC Davis Health discovered the cancer had spread to lymph nodes in her underarm. She underwent eight rounds of chemotherapy and 20 sessions of radiation treatment.

Throughout her treatments, Kashiwada kept her ordeal a secret from her grandmother, who had helped raise her. Her grandmother never knew about the diagnosis. “I didn't want her to worry about me or add stress to her,” Kashiwada said. “She just would probably never sleep if she knew that was happening. It was very important to me to protect her.”

Kashiwada moved in with her parents. Her mom took a leave from work to help take care of her.

Kashiwada’s two young children, who were 3 and 6 at the time, stayed with their dad so she could focus on her recovery.

“The kids would come over after school,” she said. “My dad would pick them up and bring them over to see me almost every day while their dad was at work.”

Kashiwada spent months regaining strength after the radiation treatments. She returned to work but with a doctor’s instruction to avoid lifting heavy objects.

Kashiwada had her final reconstructive surgery a few weeks before covid lockdowns began in 2020. But her treatment was not finished.

Her doctors had told her that estrogen fed her cancer, so they gave her medicine to put her through early menopause. The treatment was not as effective as they had hoped. Her doctor performed surgery in 2021 to remove her ovaries.

More recently, she was diagnosed with osteopenia and will start injections to stop bone loss.

Kashiwada said she has moved past many of the negative emotions she felt about her illness and wants other young women, including Asian American women like her, to be aware of their elevated risk.

“No matter how healthy you think you are, or you're exercising, or whatever you're doing, eating well, which is all the things I was doing — I would say it does not make you invincible or immune,” she said. “Not to say that you should be afraid of everything, but just be very in tune with your body and what your body's telling you.”

Phillip Reese is a data reporting specialist and an associate professor of journalism at California State University-Sacramento.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. Supplemental support comes from the Asian American Journalists Association-Los Angeles through The California Endowment.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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This story can be republished for free (details).

7 months 6 days ago

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An Arm and a Leg: Don’t Get ‘Bullied’ Into Paying What You Don’t Owe

Caitlyn Mai thought she did everything right. She called ahead to make sure her insurer would cover her cochlear implant surgery. She thought everything went according to plan but she still got a bill for the full cost of the surgery: more than $139,000. 

What Caitlyn did next is a reminder of why a beloved former guest once said you should “never pay the first bill.” This episode of “An Arm and a Leg” is an extended version of the July installment of the “Bill of the Month” series, created in partnership with NPR.

Dan Weissmann


@danweissmann

Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.

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Emily Pisacreta
Producer

Claire Davenport
Producer

Adam Raymonda
Audio wizard

Ellen Weiss
Editor

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Don’t Get ‘Bullied’ Into Paying What You Don’t Owe

Dan: Hey there — 

One morning when she was in eighth grade, Caitlin Mai did what she always did when she woke up. 

Caitlyn Mai: Music has always been a big part of my life. And so I immediately put in my headphones and started putting on music as I was about to get out of bed and get ready. And I noticed my earbud in my right ear wasn’t working. 

Dan: It was obvious, because on this Beatles tune she’d cued up, Eleanor Rigby, the vocals are almost all on the right-hand side, and she couldn’t hear them. 

Caitlyn: I was like, that’s kind of weird. So I switched the earbuds and it worked fine. But then it was, the other one wasn’t working in my right ear. And I was like, what? 

Dan: Yeah, confusing. And then she tried getting out of bed. 

Caitlyn: I was so dizzy. It was my first time experiencing vertigo, and it was so severe, I couldn’t walk across the room without getting severely motion sick. 

Dan: With that vertigo, Caitlin could barely walk at all. She had no sense of balance — that actually relies on a mechanism inside our ears. Later, doctors found she had lost 87 percent of her hearing on the right side. 

Caitlyn: They think I just had some sort of virus that settled in my ear, and it damaged my ear. But I went to bed completely healthy the night before. Woke up, couldn’t hear out of my ear. 

Dan: She had to learn how to walk all over again.

Caitlyn: I have to rely on my eyes. My friends still find it hilarious if I close my eyes, I fall over. 

Dan: That was eighth grade. Caitlyn made it through high school, in Tulsa where she grew up without a lot of accommodations. 

Caitlyn: Cause in middle school, early high school, you don’t want to bring attention to your disability. At least I really didn’t want to at the time. I was super anxious about that. 

Dan: Catilyn’s 27 now, she works as a legal assistant in Oklahoma City. Her husband’s a lawyer. And for the longest time, she couldn’t access a tool that helps restore hearing for lots of people: Cochlear implants — small devices that stimulate nerves inside the ear. 

The FDA didn’t approve them for just one ear until a couple of years ago. Last year, Caitlin got her insurance to approve one for her. She had surgery in December to insert the implant. And in January, an audiologist attached an external component to switch on Caitlin’s right-side hearing. 

Caitlyn: She said, okay, at some point, you’re gonna start hearing some beeps, just say yes when you can hear them. And my husband said my face just, out of nowhere, lit up, and I go, yes! It was streaming directly to my cochlear implant. And I definitely started tearing up. 

Dan: Then, two weeks later, Caitlin got an alert from the hospital on her phone. 

Caitlyn: And I open it up, and I immediately started having a panic attack. 

Dan: It was a bill for a hundred and thirty-nine thousand dollars. The full amount for Caitlin’s surgery. 

Which, given that Caitlyn had gotten her insurance company’s OK for the procedure in advance, was a pretty big surprise. NPR featured Caitlyn’s story recently for a series they do with our pals at KFF Health News. 

NPR HOST: Time now for the latest installment in our bill of the month series, where we dissect and explain confusing or outrageous medical bills.

Dan: I interviewed Caitlyn for that story. And we’re bringing you an expanded version here because Caitlin’s situation — well, it was a good story. And it made me curious about a couple things. 

It also reminded me of some good advice we’ve heard here before — and it reminded me of an important colleague and teacher. And the bottom line to Caitlyn’s story? Stand up for yourself. Don’t cave. Make the next call. 

This is An Arm and a Leg — a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge — so our job on this show is to take one of the most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering, and useful. 

To get her insurance company’s approval, Caitlyn had already spent a lot of time — and a lot of money — in the months before surgery. For instance … 

Caitlyn: To prove to insurance that a hearing aid wouldn’t work had to be fitted for a hearing aid and then do a couple hours of testing to prove, yep, it doesn’t help. 

Dan: There were reviews with audiologists, with her surgeon, and an MRI to make sure there wasn’t too much scar tissue for an implant to take. 

Caitlyn: That took a long time to get scheduled, get insurance to approve, pay for, then get back for another appointment. I counted up at one point — it’s like around eight or ten appointments that I had before the final, okay, let’s schedule surgery. 

Dan: And — you caught that, right? Where she mentioned she had to get her insurance to approve paying for the MRI? Every one of these preliminary steps cost money, and she had to wrangle with her insurance to get their OK. 

But of course even with her insurance saying yes, there were still copays, and deductibles, and what’s called co-insurance — where you pay a percentage of any bill from a hospital. 

Which meant Caitlyn was chipping away at what’s called her out-of-pocket maximum: The most she could be on the hook for in a given calendar year. The surgery got scheduled for December — the same calendar year as all those tests — and she checked to see what she might have to pay. 

Caitlyn: I looked at my little portal for insurance, I’m showing what’s left on my out-of-pocket max for the year is around 2,000, give or take, 200 dollars. 

Dan: She called the insurance company to confirm that estimate. And then she cranked up her due diligence. 

Caitlyn: I called the hospital, and I asked for the names of the anesthesiologist, the radiologist. I asked for all of the details of who is possibly going to be on my case. And then I turned around and I called insurance and I said, I want to make sure all of these physicians are going to be in network on this date. 

Dan: Caitlyn had done her homework. Probably more than a lot of us would have thought to do. I asked her: How’d you get so diligent? And first, like a lot of folks I’ve talked with, she said: Having a major health issue as a kid — losing her hearing — gave her an early heads-up to watch out. 

Caitlyn: A little bit was, uh, experience of my mom dealing with insurance battles with me growing up. I remember her running into issues with that. 

Can: And she’s got some experts in her life now. Her brother and her sister in law work in health care. One of her best friends is a healthcare lawyer and had some tips. 

Caitlyn: But honestly, I think a lot of it is I have anxiety, and so I was just really paranoid. 

Dan: The surgery went great. And a few weeks later, Caitlyn was in the audiologist’s office, getting that external component attached, and hearing on her right side for the first time in 15 years. Caitlyn says it all took some getting used to. 

Caitlyn: I remember those, like, first few days especially, it wasn’t really like I was hearing full sounds. It was kind of just different pitches. I wasn’t hearing the words and everything, it was just the breakdown of the different pitches. And they also were just so much higher than they should be.

Dan: So interesting. Radiolab may have already done this story — [but] I’m just like, let’s find out what that’s about. 

Caitlyn: I love Radiolab. 

Dan: Me too! Anyway, two weeks after she starts getting used to her new hearing situation, Caitlyn gets that alert on her phone. 

Caitlyn: And it tells me I have a new invoice. And I was like, oh, awesome! I’m not stressed at all, I did my due diligence. I know it’s gonna be expensive, but affordable. 

Dan: Except, right: It’s a hundred and thirty-nine thousand dollars! Six figures. The full amount for her surgery. You might remember, Caitlyn said she had a panic attack. That was literal: Heart palpitations, hyperventilating. 

It took her 20 or 30 minutes to get calm enough to start making calls. And she says her insurance told her they hadn’t paid because the hospital had neglected to send something important. 

Caitlyn: The itemized bill. Which has all the codes and everything, 

Dan: Caitlyn says she immediately asked the hospital, in writing to send her insurance the itemized bill, and she says sent a follow-up a week later. But her phone kept pinging with alerts about owing the hospital a hundred and thirty-nine thousand dollars. 

Caitlyn: The app so conveniently told me that I could sign up for monthly payments of 11,000 dollars a month, which is just so absurd. 

Dan: After two weeks, she asked her insurance: Do you have that itemized bill yet? They didn’t. So she called the hospital again. 

Caitlyn: The girl I spoke with said she was putting in a request to have it faxed to my insurance and that would take two to three weeks. And I said, hold on, it takes you two to three weeks to fax a document?

Dan: Answer: Apparently yes? And Caitlyn says even three weeks later, her insurance company still hadn’t gotten that itemized bill the hospital promised to fax. 

And all this time Caitlyn was still getting notices from the hospital billing department. And the latest one said, “past due.” She tried something new: So she called the hospital and demanded they send the itemized bill directly to her, immediately. Which they did. 

Caitlyn: So I turned around and faxed it to my insurance. 

Dan: Yeah but, this did not end things, not yet. Caitlyn says she got more notices labeled past due. She fought her way to a direct conversation with a supervisor. 

Caitlyn: They kept saying,‘well, a supervisor’s not available right now.’ I said, No, you’re finding a supervisor. I don’t care if they’re cutting their lunch short. I’m talking to a supervisor right now. I don’t care if I sound like a Karen. It’s been a long, long year already. 

Dan: Eventually, Caitlyn got a supervisor on the line and got the supervisor to get permission from a manager to stop sending her bills while the hospital waited for insurance to pay. 

By this time, it was late March, almost two months after that first bill gave Caitlyn that panic attack. Also by this time, Caitlyn had sent her bill to the folks at NPR and KFF Health News for that Bill of the Month feature they do. 

Caitlyn: I was like, I just need to vent. And so I submitted it just to vent it out. Never expecting anyone to reach out. 

Dan: But they did. And on April 9th, Caitlyn got a call from a regional Patient Service Center manager. 

Caitlyn: And she was super nice and tried to be really apologetic, but never actually accepting any blame. Or outright saying,‘we’re so sorry.’ Just said, ‘I’m sorry for your frustration, that sounds awful.’ 

Dan: She DID tell Caitlyn that the hospital had received payment from her insurance. And that Caitlyn could expect a final bill within a week. And that instead of a hundred thirty nine thousand, it was gonna be one thousand, nine hundred eighty-two dollars and twenty-five cents. 

Caitlyn: I said,‘yep, that actually matches what my insurance said,’ and she said,‘oh, you know what was left on your out-of-pocket, most people don’t,’ and I said,‘I’m very well versed in every dollar sign at this point in this entire case.’ 

Dan: Caitlyn says she got that bill four days later and paid it immediately. 

Caitlyn: And I saved the receipt of that, I have saved everything. It feels like it’s resolved, but there’s part of me that’s still waiting for the other shoe to drop 

Dan: So, Caitlyn’s story brings up a LOT. Of course, I loved the way she kept fighting, and ultimately took control of the situation. And I hated how she got trapped between these two big entities and how much time and stress the whole thing cost her. 

Because, you know, the hospital could’ve resolved this so quickly by just sending that itemized bill to Caitlyn’s insurance company. 

Caitlyn: And the hospital did not do that. They just turned around and billed me. Which was a stupid idea, since the insurance company is more likely to have the money. Not the legal assistant in Oklahoma. 

Dan: Caitlyn’s story raised a few questions, and brought back a lot of themes we’ve touched on before. We dug in also found some new tips, and some memories I want to share. That’s coming right up. 

This episode of An Arm and a Leg is a co-production of Public Road Productions and KFF Health News, a nonprofit newsroom covering healthcare in America. Their senior contributing editor, Elisabeth Rosenthal, reported Caitlyn’s story for KFF and NPR. She wrote a book about U.S. healthcare. It’s called “An American Sickness,” and it was an inspiration for this show. 

One question we ask sometimes on this show when we see a bill that’s so wildly ridiculous and unfair is: Can they freaking DO that?!? Like, is that even legal?

Like in this instance, can they just keep billing you while they’re apparently not even playing ball with your insurance? And: Do we have any legal weapons to fight back with? 

We asked a bunch of legal experts, and they pretty much all said: Yes, they probably can do that, and no, we probably don’t have any easy legal weapons we can fight with. But then I talked with Berneta Haynes. She’s a senior attorney with the National Consumer Law Center. 

And she had some practical thoughts that are super-worth sharing. She used to work for a nonprofit called Georgia Watch — that’s a state-level consumer protection group. They operated a hotline people could call for help. 

Berneta Haynes: Consumers and patients would call us with all kinds of hospital billing issues and medical debt issues. And we’ve had these kinds of weird questions where really, there wasn’t a particular lever at the legal level to actually help them. But if they feel like they’re experiencing what could be considered potentially an unfair business practice, it is totally within their right to file a complaint within their state A. G.’s office. 

Dan: The A.G. The state attorney general. Whoever’s doing you wrong, you can file a complaint. 

Berneta: Whether or not there’s any real hook that your AG could use to hold them accountable is always a question that’s up in the air. But even just the act of filing a complaint is very likely to get that entity, that company, to behave correctly. 

Dan: Basically, go up the chain. Whether to a government watchdog, or in the organization that’s bugging you. We’ve heard this before, but I loved the specifics that Berneta Haynes shared with me about her own experiences. 

Berneta: I will tell you, one of the mechanisms my husband and I have had to utilize repeatedly, not in a hospital context, but in various other service contexts is to reach out or threaten to reach out to the CEO or president. And it gets results every time. It gets results every time! 

Dan: Oh, and here’s the pro tip.

Berneta: My husband has repeatedly, when he’s had to do it, set up a LinkedIn premium account just to find the CEO and message them directly. 

Dan: Ooh, that’s good! 

Berneta: That has been the way we’ve gotten resolution on all kinds of issues related to insurance companies not wanting to do right by us. And so forth. 

Dan: So that was fun. Now, I do want to talk a little bit about what Caitlyn did, and what allowed her to do it. Caitlyn figures she made at least a dozen phone calls. And she says she’s lucky — privileged — to have a job where she could do that. Here’s the first thing she says she did once she got over that panic attack when the bill arrived. 

Caitlyn: I just went to my boss’s office and I said, I’m going to have to make some phone calls. There’s a problem with my hospital bill. She’s like, don’t worry about it. Do what you need to. 

Dan: And she had people in her corner, like the friend who’s a healthcare lawyer. And legal advice wasn’t the big thing that friend gave Caitlyn. 

Caitlyn: Most of the time I was just venting to her, and she was like,‘you need to keep pushing, like, keep going at them. Don’t let them win. Don’t roll over. Just keep pushing. They should be paying.’ 

Dan: And at that point, I told Caitlyn, she and her story were really reminding me of someone. 

Dan: There’s a reporter named Marshall Allen. He worked for ProPublica for a long time. He wrote on healthcare, and he wrote on stuff like this. And eventually he wrote a book, giving advice to people. And the title of the book was, Never Pay the First Bill. 

Caitlyn: Oh! 

Dan: And I told Caitlyn, Marshall was on my mind at the time because when Caitlyn and I talked in May, Marshall had just died, like less than two weeks before. And he was young — 52. He had three kids.

Caitlyn: So sad. 

Dan: Super, super, super sad. 

Dan: And of course the title of Marshall’s book — Never Pay the First Bill — that’s exactly how Caitlyn played things. She wasn’t going to think about paying anything until she got her questions answered. And it is worth remembering. 

When we were talking with legal experts, one thing a few of them said was: If you pay something that insurance was supposed to cover, and then insurance comes through, you’re supposed to get a refund. But who wants to chase that? 

Yeah. Don’t pay that first bill until you’ve made sure this is money you really owe. So, this seems like a good time to memorialize Marshall Allen a little bit. He liked to compare the healthcare system to a schoolyard bully. Here’s what he told me when he was on this show in 2021 when his book had just come out. 

Marshall Allen: What I think we need to do is stand up to the bully. We need to stop being afraid. We need to stop thinking someone else is going to stick up for us. And I wrote the book to equip and empower people to stand up to the bullies. 

And I think it’s tremendously empowering, but it’s hard, and standing up to a bully takes incredible courage. It takes fortitude. It takes persistence. You might get beat up in the process. There’s no guarantee of victory. It’s risky, right? But if we don’t try, we don’t have a chance. 

Dan: Marshall was a Christian minister before he became a reporter. He wrote a thoughtful essay about how his work as an investigative reporter fit with his faith. The gist was: The Bible is pretty clear that cheating people and exploiting them is wrong. 

And to me, it seems like there was an element of ministry– not just evangelism — to what he did after his book came out. Here’s what he told me in 2021: 

Marshall: I’ve started taking calls, and I’m responding to emails that I get from people and I’m saying,‘call me, let’s talk it through, let me help you with this. Let’s work through this together.’ And now I’m helping people work through their bills, work through these situations where they’re being cheated. It’s super satisfying and gratifying, so it’s my new hobby. 

Dan: He kept at it. He left ProPublica and took a job with the Office of the Inspector General at the federal department of Health and Human Services. And he published a newsletter — it was free, but he encouraged people to pay if they could, and he used the money to hire medical-bill advocates to help people with especially tricky cases. 

And Marshall was funny. I want to close out this episode with a story he told me the first time we talked, in 2019. It’s kind of an origin story. 

Marshall: So when I was 16 years old, um, I worked for this dinner theater in Golden, Colorado, where I grew up. One day I show up for work, and they’ve closed down the business. They owed me like three weeks of pay. 

The guy had closed the place without paying us and said,‘there’s no money. We shut down the business. We can’t afford to pay you. You’re out of luck.’ Well, we were all pretty angry about that. We were really angry because they had opened a sister dinner theater under the same company umbrella across town. And we all knew that. And we were like, well, if you can afford to keep your other place open, you can afford to pay us. And they said,‘sorry, kids, you’re out of luck.’ 

Dan: Marshall goes home, tells his mom what’s going on. 

Marshall: And my mom tells me you should sue him. I’m like, mom, what do you mean? I can barely drive. How can I sue the guy? She goes,‘you should take him to small claims court.’ So lo and behold, I go down, I fill out the paperwork. 

It’s a few paragraphs. It’s easy to fill out the paperwork in small claims court. I fill out the paperwork and turn in like 10 bucks at the time or whatever it costs. It’s not that expensive to file one of these cases. And I get a notice in the mail like six weeks later. And I have a court date, and I’m like geared up for this big Perry Mason moment. 

Dan: Perry Mason was a lawyer on this super old TV show — courtroom drama. But this wasn’t a courtroom.

Marshall: It’s more like a conference room and there’s some administrative hearing judge in there. And lo and behold, the owner of the company and his attorney had to show up in court there with me. 

And I thought we’d have a big argument all the administrative judge did is he read my few paragraphs on the little thing I’d written up and he looks over at the owner and he goes,‘is what this kid saying true?’And the owner’s like, ‘well, yeah.’ And the judge is like,‘give this kid his money.’ And I was like, This is amazing. You know what? Maybe the court system does actually work every now and then maybe every now and then the little guy can win. 

Dan: Marshall and I both stayed interested in how people can use the legal system to get our rights. I learned a lot from Marshall, and like a lot of people, I just loved his spirit. Marshall Allen, thank you. And here’s the end of my conversation with Caitlyn. 

Dan: Marshall Allen would have been extremely proud of you. 

Caitlyn: Yeah. 

Dan: Caitlyn has the final word here. 

Caitlyn: I got to the point where I was like, it’s my fight. I’ve got gasoline in the fire. I’m, I’m going for it. 

Dan: We’ll be back with a new episode in a few weeks. Till then, take care of yourself. 

This episode of An Arm and a Leg was produced by me, Dan Weissmann, with help from Emily Pisacreta and Claire Davenport — and edited by Ellen Weiss. 

KFF senior contributing editor Elisabeth Rosenthal reported Caitlyn’s story for KFF and NPR. She was editor in chief there when she invited me to collaborate with KFF to make this show’s second season, and we’ve been colleagues ever since. I’ve never felt so lucky or so thankful. 

Special thanks to Christopher Robertson at Boston University’s School of Law, Wendy Epstein of the College of Law at DePaul University, Sabrina Corlette at Georgetown University’s Center on Health Insurance Reforms, and Elisabeth Benjamin from the Community Service Society of New York for pitching in with legal expertise here. 

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience. Bea Bosco is our consulting director of operations. Sarah Ballama is our operations manager. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about healthcare in America and a core program at KFF, an independent source of health policy research, polling, and journalism. 

Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show. And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org. Finally, thank you to everybody who supports this show financially. You can join in any time at https://armandalegshow.com/support/. Thank you so much for pitching in if you can — and, thanks for listening.

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

To keep in touch with “An Arm and a Leg,” subscribe to its newsletters. You can also follow the show on Facebook and the social platform X. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

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KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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KFF Health News

KFF Health News' 'What the Health?': Let the General Election Commence

The Host

Julie Rovner
KFF Health News


@jrovner


Read Julie's stories.

The Host

Julie Rovner
KFF Health News


@jrovner


Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

The conventions are over, and the general-election campaign is officially on. While reproductive health is sure to play a key role in the race between Vice President Kamala Harris and former President Donald Trump, it’s less clear what role other health issues will play.

Meanwhile, Medicare recently announced negotiated prices of the first 10 drugs selected under the 2022 Inflation Reduction Act. The announcement is boosting attention to what was already a major pocketbook issue for both Republicans and Democrats.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of Politico and Johns Hopkins University’s schools of nursing and public health, Shefali Luthra of The 19th, and Alice Miranda Ollstein of Politico.

Panelists

Joanne Kenen
Johns Hopkins University and Politico


@JoanneKenen


Read Joanne's articles.

Shefali Luthra
The 19th


@shefalil


Read Shefali's stories.

Alice Miranda Ollstein
Politico


@AliceOllstein


Read Alice's stories.

Among the takeaways from this week’s episode:

  • The Democratic National Convention highlighted reproductive rights issues as never before, with a parade of public officials and private citizens recounting some of their most personal, painful memories of needing abortion care. But abortion rights activists remain concerned that Harris has not promised to push beyond codifying the rights established under Roe v. Wade, which they believe allows too many barriers to care.
  • As reproductive rights have taken center stage in her campaign, Harris has been less forthcoming about her other health policy plans so far. In her career, she has embraced fights against anticompetitive behavior by insurers and hospitals and in drug pricing.
  • Would former President Donald Trump make Robert Kennedy Jr. his next health secretary? Even many Republicans would consider his elevation a bridge too far. Polls show Trump stands to gain from Kennedy’s departure from the presidential race, but likely only slightly more than Harris.
  • In other national health news, abortion access will be on the ballot this fall in Arizona and Montana, and the federal government recently announced the first drug prices secured under Medicare’s new drug-negotiation program.

Also this week, Rovner interviews KFF Health News’ Tony Leys, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment about a woman who fought back after being charged for two surgeries despite undergoing only one. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too: 

Julie Rovner: The New York Times’ “Hot Summer Threatens Efficacy of Mail-Order Medications,” by Emily Baumgaertner.

Joanne Kenen: The Milwaukee Journal Sentinel’s “Who Is Gus Walz and What Is a Non-Verbal Learning Disorder?” by Natalie Eilbert. 

Alice Miranda Ollstein: The Wall Street Journal’s “The Fight Against DEI Programs Shifts to Medical Care,” by Theo Francis and Melanie Evans.  

Shefali Luthra: The Washington Post’s “Weight-Loss Drugs Are a Hot Commodity. But Not in Low-Income Neighborhoods,” by Ariana Eunjung Cha. 

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Transcript: Let the General Election Commence

KFF Health News’ ‘What the Health?’Episode Title: ‘Let the General Election Commence’Episode Number: 361Published: Aug. 23, 2024

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.] 

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Friday, Aug. 23, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this. So here we go. Today we are joined via teleconference by Joanne Kenen of the Johns Hopkins schools of public health and nursing and Politico Magazine.

Joanne Kenen: Hi, everybody.

Rovner: Shefali Luthra of The 19th.

Shefali Luthra: Good morning.

Rovner: And Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Later in this episode, we’ll have my interview with KFF Health News’ Tony Leys, who reported and wrote the latest KFF Health News-NPR “Bill of the Month,” about a woman who got two bills for the same surgery and refused to back down. But first, this week’s news. So, now both conventions are over. Labor Day is just over a week away. And I think it’s safe to declare the general election campaign officially on. What did we learn from the just-completed Democratic [National] Convention, other than that Beyoncé didn’t show up?

Luthra: I think the obvious thing we learned is there is a lot of abortion for Democrats to talk about and very little abortion Republicans would like to. I did the fun brain exercise of going back through old Democratic conventions to see how much abortion came up. It might be interesting to note that in 2012, for instance, [the former president of Planned Parenthood] Cecile Richards spoke, never mentioned abortion.

A Planned Parenthood patient came and didn’t talk about abortion, talked about endometriosis care. And I think that really underscores what a shift we have seen in the party from treating abortion as an issue for the base, but not one that got center stage very often. And that shifted a bit in 2016, but is really very different now.

We had abortion every night, and that is just such a marked contrast from the RNC, where Republicans went to great lengths to avoid the topic because Democrats are largely on the winning side of this issue and Republicans are not.

Rovner: I’ve watched every Democratic convention since 1984. I have to say, I’m still trying to wrap my brain around the idea of all of these, and not just women, but men and [Sen.] Tammy Duckworth talking about IVF and women who had various difficulties with pregnancy. Usually, it would be tucked into a section of one night, but every single night we had people getting up and telling their individual stories. I was kind of surprised. Alice, you wanted to add something?

Ollstein: Yeah. We also wrote about how the breadth of the kinds of abortion stories being told has also changed. There’s been frustration on the left for a while that only these medical emergency cases have been lifted up.

Rovner: The good abortions.

Ollstein: Exactly. So there’s a fear that that further stigmatizes people who just had an abortion because they simply didn’t want to be pregnant, which is the majority of cases. These really awful medical emergencies are the minority, even though they are happening, and people do want those stories told. But I think it was notable that the head of Planned Parenthood talked about a case that was simply someone who didn’t want to be pregnant and the lengths she had to go through to get an abortion.

I think we’re still mostly seeing the more politically palatable, sympathetic stories of sexual assault and medical emergencies, but I think you’re starting to see the discourse broaden a little bit more. It’s still not what a lot of activists want, but it’s widening. It’s opening the door a little bit more to those different stories.

Rovner: And certainly having [Kamala] Harris at the top of the ticket rather than Biden, I mean, she’s been the point person of this administration on reproductive health even before Roe v. Wade got overturned.

Ollstein: Right. And I think it’s been interesting to see the policy versus politics side of this, where politically she’s seen as such a stronger ally on abortion rights, and her messaging is much more aggressive than [President Joe] Biden’s, a lot more specific. But when it comes to the policy, she’s exactly where Biden was. She says, “I want to restore Roe v. Wade,” where a lot of activists say that’s not enough. Roe v. Wade left a lot of people out in the cold who couldn’t get an abortion that they wanted later in pregnancy, or they ran into all these restrictions earlier in pregnancy that were allowed under Roe. And so I think we’re going to see that tension going forward of the messaging is more along the lines of what the progressive activists want, but the policy isn’t.

Luthra: And to build on Alice’s point, I mean, a lot of the speakers we had this week are speakers who would’ve been there for a Biden campaign as well. Amanda Zurawski was a very effective Biden surrogate. She is now a Harris surrogate.

And I think what’s really important for us to remember as we look not just to November, but to potentially January and beyond, is that what Harris is campaigning on, what Biden tried to campaign on, although he struggled to say the words, is something that probably isn’t going to happen because they’re talking about signing a law to codify Roe’s protections and they in all likelihood won’t have the votes to do so.

Rovner: Yes. And they either have to get rid of the filibuster in the Senate or they have to have 60 votes, neither of which seems probable. And as I have pointed out many times, the Democrats have never had enough votes to codify Roe v. Wade. There’s never actually been a basically pro-choice Congress. The House has never been pro-choice until Trump was president, when obviously there was nothing they could do.

It’s not that Congress didn’t want to, or the Democrats in Congress didn’t want to or didn’t try, they never had the votes. For years and years and years, I would say, there were a significant number of Republicans who were pro-abortion rights and a significant, even larger number of Democrats who were anti-abortion. It’s only in the last decade that it’s become absolutely partisan, that basically each party has kicked out the ones on the other side. Joanne, you wanted to add something?

Kenen: Remember that the very last snag that almost pulled down the Affordable Care Act at zero hour, or zero minus, after zero hour, was anti-abortion Democrats. And that was massaged out and they cut a deal and they put in language and they got it through. But no, the phenomenon Julie’s talking about was that the dynamics have changed because of the polarization.

I mean, it wasn’t just abortion; there were centrists in both parties, and they’re pretty much gone. The other thing that struck me last night is there was rape victims and victims of traffic and abuse speaking both within the context of abortion. I mean, that was a mesmerizing presentation by a really courageous young woman.

And then there were other episodes about sexual violence against women, a nod to Biden a couple of times, who actually wrote the original Violence Against Women Act in ’94, part of the crime bill, but also in terms of liberal Democrats or progressives who … “prosecutor” isn’t their favorite title. But because they tied these themes together or at least link them or they were there in a basket together of her as a protector of victims of trafficking, rape, and abuse, starting when she was in high school with her friend.

So I thought that that was another thing that we would not have spoken about. You did not have young women talking about being raped by their stepfather and impregnated at age 12.

Rovner: So aside from reproductive rights, which was obviously a headline of this convention, it’s almost impossible to discern what a second Trump administration might mean for health because Trump has been literally all over the place on most health issues. And he may or may not hire back the former staffers who compiled Project 2025.

But we don’t really know what a Harris administration would mean either. There is still no policy section on the official Harris for President website. One thing we do seem to know is that she seems to have backed away from her support for “Medicare for All,” which she kind of ran on in 2019.

Luthra: Sort of.

Rovner: Yeah, kind of, sort of. What else do we know about what she would do on health care other than on reproductive health, where she’s been quite clear?

Ollstein: So the focus on the policies that have been rolled out so far have been cost of living and going after price-gouging. She also has a history, as California attorney general, of using antitrust and those kinds of legal tools to go after monopolistic practices in health care. In California, she did that on the insurance front and the hospital front and the drug pricing front. So there is an expectation that that would be a focus. But again, they have not disclosed to us what the plans are.

Kenen: I mean, one of the immediate things, and I watched a fair amount of the convention and none of us absorbed every word, but I don’t think I heard a single mention of it was the extension of the ACA subsidies, which expire next year. I mean, if they mentioned it, it was in passing by somebody. So you didn’t really hear too much ACA, right? You hear that wonderful line from President [Barack] Obama when he said the Affordable Care Act, and then he said that aside: “Now that it’s popular, they don’t call it Obamacare anymore.”

But you didn’t hear a lot of ACA discussion. You heard a lot of drug price and you heard a lot of some vague Medicare, mostly in the context of drug prices. But there wasn’t a segment of one night devoted to the health policy. So I mean, I think we can assume she’s pretty much going to be Biden-like. I would be surprised if she didn’t fight to preserve the subsidies.

The Medicare drug stuff is in law now and going ahead. I think Julie wants to come back to that, but I don’t think we know what’s different. And I don’t know what, in that to-do list, I don’t think she articulated the priorities, although I would imagine she’ll start talking about the subsidies because the Republicans are probably going to oppose that. But no, it wasn’t a big focus. It was like sprinkles on an ice cream cone instead of serving a sundae.

Rovner: It’s hard to remember that just four years ago in 2020, there was this huge fight about the future of health care. Do we want to go to Medicare for All? What do we want to do about the ACA? Biden was actually the most conservative, I think, of the Democratic candidates when it came to health care.

Kenen: And then he expanded things way more than people expected him to.

Rovner: Yes, that’s true. I was going to say, but the other thing that jumped out at me is how many liberals, [Rep.] Alexandria Ocasio-Cortez, talking like a moderate basically, I mean, giving this big speech. It feels like the left wing of the Democratic Party, at least on health care, has figured out that it’s better to be pragmatic and get something done, which apparently the right wing of the Republican Party has not figured out.

Luthra: Well, part of what happened, right, is, I mean, the left lost in 2020. Joe Biden won. He became president. And there’s this real interesting effort that we saw this week to try and recapture the energy of 2008, 2012, the Obama era, and that wasn’t a Medicare-for-All-type time. That was much more vibes and pragmatism, which is what we are seeing now.

Kenen: The other thing is that the progressives, more centrist, more moderate, whatever you call the mainstream bring, they kissed and made up. I mean, [Sen.] Bernie Sanders became an incredible backer of Biden. I mean, they fought on the original Bring [Build] Back Better. That became the watered-down Inflation Reduction [Act]. They had some policy differences and some of which were stark.

But basically, Bernie Sanders became this bulwark for it, helped create party unity, helped move it ahead, supported Biden when he was thinking about staying in the race. So I think that Bernie’s support of Biden, who did do an awful lot of things on the progressive agenda; he did expand health care, although not through single-payer, but through expanded ACA. He did do a lot on climate. He did do a lot of things they cared about, and the party is less divided. We don’t know how long that’ll last. We had, not just unusual, but unprecedented last two months. So these things like Medicare for All versus strengthening the ACA, they’ll bubble up again, but they’re not going to divide the party in the next seven weeks, eight weeks, whatever we’re out: 77 days. Do the math, 10 weeks.

Rovner: Seventy-some days. In other political news, third-party candidate and anti-vax crusader Robert F. Kennedy Jr. is going to drop out of the race later today and perhaps endorse Donald Trump. The rumor is he’s hoping to win a position in a second Trump administration, if there is one, possibly even secretary of Health and Human Services. What would that look like? A lot of odd faces from our panelists here.

Ollstein: I’m always skeptical. There’s also talk about Elon Musk getting a Cabinet job. I’m always skeptical of these incredibly wealthy individuals — who, currently, as private citizens, can basically do whatever they want — I have a hard time imagining them wanting to submit to the constrictures and the oversight of being in the Cabinet. I would be surprised. I think that it sounds good to have that power, but to actually have to do that job, I think, would not be appealing to such people. But I could be surprised.

Rovner: We did have Steve Mnuchin as secretary of the Treasury, and he seemed to have a pretty good time doing it.

Ollstein: I guess so, but I think his background was maybe a little more suited to that. I don’t know.

Kenen: Mnuchin, you’ve also had Democrats who appoint Wall Street types. Rubin being one of several, at least.

Rovner: We tend to have billionaires at the Treasury Department.

Kenen: The idea of Bobby Kennedy running HHS, I think even many Republicans who support Trump would find a bridge too far. And remember they want … if you look at the part of the Republican Party that really equate … their priority is anti-abortion, that’s it for them. There’s some on the right who talked about — I’m pretty sure this is in 2025, but at least it’s out there — change it to the Department of Life.

There’s a faction within the Republican Party who sees HHS as the way of driving an anti-abortion agenda. What’s left of abortion, right? It has oversight over the NIH [National Institutes of Health] and FDA [Food and Drug Administration] and CDC [Centers for Disease Control and Prevention], et cetera. You can’t say that Trump won’t do something because he is a very unpredictable person. So, who knows what Donald Trump would do? I don’t think it’s all that likely that Bobby Kennedy gets HHS.

But I do think that in order to get the endorsement that Trump wants, he’d have to promise him something in the health realm — whether it’s a special adviser for vaccine safety, who knows what it would be? But something that makes him feel like he got something in exchange for the support.

Rovner: I do wonder what the support would mean politically to have prominent anti-vaxxer. If Trump is out trying to capture swing voters, this doesn’t seem necessarily a way to appeal to suburban moms.

Kenen: Remember the vaccine commission to study vaccine safety? And it was Bobby Kennedy who came out of a meeting with Trump and said it was going to happen, that he was going to be the chair of it. The commission didn’t happen, and Bobby Kennedy didn’t chair it. So we already know that this goes back, what, eight years now. So there’s going to be a tit-for-tat. That’s politics. Whether the tat is HHS secretary, I’m skeptical. But again, I’d never say anything isn’t possible in Washington.

Rovner: If nothing else, this year has shown us that …

Kenen: I think it’s extremely unlikely.

Luthra: To your point about who Bobby Kennedy appeals to, the polls tell us that everyone who supports him, by and large, would vote for Trump if he dropped out. So I mean, that’s obviously why this would happen. It’s because it is a net gain for Trump and his calculus is probably that it would outweigh the losses he might get from having someone with a strong anti-vax bent on his side. I think that’s a pretty obvious, to me at least, gain for him rather than loss, especially given how close the race is.

Rovner: While we are on the subject of national politics and abortion, former President Trump this week said in an interview with CBS that he would not enforce the Comstock Act to basically impose a national abortion ban, reiterating that he wants to leave it to the states to decide what they want to do. Alice, it’s fair to say this did not go over very well with the anti-abortion base, right?

Ollstein: That’s right. It’s interesting. I reached out to lots of different folks in the anti-abortion movement to get their take, and I expected at least some of them to say, “Oh, Trump’s just saying that. He doesn’t really mean it. He’ll still do it anyways.” None of them said that. They all completely took him seriously and said that they were extremely upset about this. I mean, it’s also not happening in a vacuum.

They were already upset about the RNC [Republican National Convention] platform having some anti-abortion language being taken out of it. There is still some anti-abortion language in there. Folks should remember him declining to endorse a national abortion ban. Him refusing to say how he plans to vote in Florida’s referendum on abortion coming up. So this is one more thing that they’re upset about. And they told me that they think it could really cost him some votes and enthusiasm from the base.

He’s having trouble winning over these moderate swing voters. If that’s true, then he needs every vote on the more religious right/conservative wing of things. And they’re saying, look, most people are probably going to vote for him anyways because they don’t want Kamala Harris to be president. But will they volunteer? Will they tell a friend? Will they go knock on doors? Begrudgingly voting for someone versus being enthusiastic difference.

Rovner: I think it’s fair to say that it was the anti-abortion right that basically got him over the finish line in 2016 when he put out that list of potential Supreme Court nominees and signed a now-infamous letter that Marjorie Dannenfelser of the SBA [Susan B. Anthony Pro-Life America] list put together. Then the anti-abortion movement put a lot of money into door-knocking and getting out the vote. And obviously, as we all remember, it was just a few thousand votes in a couple of states that made him president.

So I was a little bit surprised that he was that definitive — although as we said 14 times already this morning — he often says one thing and does another, or says one thing and says another thing later, right.

Kenen: In the same day!

Rovner: Or in the same conversation sometimes. I was interested to see Kamala Harris in her speech refer to the Comstock Act without doing it by name. I thought that was artfully done.

Ollstein: Yeah, and several other speakers did talk about it by name, which is interesting because I think earlier this year there was this attitude among Democrats and some abortion rights leaders that there should not be a lot of talk about the Comstock Act because they didn’t want to give the right ideas. But I think now it’s pretty clear that the right doesn’t need to be given ideas. They already had these ideas. And so there’s a lot more open talk about it.

And just this piece of Project 2025, along with all of the focus on Project 2025 in general, just really seemed to resonate with voters in a really unusual way. And no matter how much Trump tries to disavow it or distance himself from it, it doesn’t seem like people are convinced, because these are very close allies of Trump who worked for him, who are likely to work for him in the future, who are the authors of this.

Rovner: And who put together this whole list of people who could work in a second administration. It’s basically the second Trump term all ready to go. It’s hard to imagine where he would then find a list of people to populate his agencies if not turning to the list that was put together by Project 2025.

So Trump says, as we’ve mentioned, that he wants voters in each state to decide how to regulate abortion. And that’s pretty much what he’s getting. Since we last talked, several states have finalized abortion rights ballot questions. But some have come with a couple of twists. Alice, where are we on the state ballot measure checklist?

Ollstein: It’s been a crazy couple of weeks. So we have Arizona and Montana certified for the ballot. Those are two huge states that also have major Senate races. Arizona is a presidential swing state. Montana, arguably not. But these are states that are going to get a blitz of ads and campaign attention. I think there is an expectation that the abortion measures on the ballot will benefit the Democratic candidates.

I would caution people to be skeptical about this. We’ve done analyses of the abortion ballot measures that have been on the ballot in the past couple of years in other states, and they did not always benefit the Democratic candidates who shared the ballot. Of course, this is a presidential year. It could be totally different.

At the same time, the big news this week was that a Arkansas Supreme Court ruling means that their abortion rights ballot measure will almost certainly not be on the ballot in November. And there’s a lot of consternation about that. The dissenting justices accused the majority of making up rules out of whole cloth and treating different ballot measures differently based on the content.

So basically there was a medical marijuana ballot measure and the sponsors of it wrote a brief saying, “Hey, we made the same alleged paperwork error that the abortion rights folks are accused of making, yet ours was certified for the ballot and theirs wasn’t. What gives?” So there are accusations of the conservative officials of Arkansas making these rulings to prevent a vote on abortion rights in that state. So they could try again in 2026. They are weighing their options right now.

Rovner: So abortion issues are not just bubbling among voters and in the elections. We now have a series of lawsuits with patients accusing hospitals that deny them emergency care of violating the Emergency Medical Treatment and Active Labor Act. Some may remember this was also the subject of a Supreme Court case this term. For those who have forgotten, Shefali, what happened with that Supreme Court case? Where are we with EMTALA?

Luthra: Great question, Julie. We are waiting, as ever, and we will be waiting for a long time because the Supreme Court after taking up that case said, “Actually, never mind. We were wrong to take this case up now. It should go back to the lower courts and continue to progress.” And what that means is uncertainty. It does mean that EMTALA’s protections exist for now in Idaho. They do not exist in Texas, where there is a related corresponding case going through the courts as well.

But regardless, EMTALA’s protections are quite meaningful for providers compared to not having them. But they are still pretty vague and pretty limited in terms of how abortion can come up in pregnancy. And that’s why we are still seeing patients filing these complaints saying, “My rights were violated. I did not get this emergency care I needed until it was very late.” But the problem there is that: A, EMTALA is retroactive.

So these complaints only come up when people know to file them; when they have perhaps already suffered medical consequences such as losing a fallopian tube, as two women in Texas both reported experiencing. You know, serious implications for their future fertility. And the other thing that’s important to note is that complaints are one step, but enforcement is another one.

And we haven’t seen a ton of hospitals being penalized by the federal government for not giving people care in these medical emergencies. And so if you’re a hospital, the dilemma is complicated, but in some ways not. Because if you provide care for someone and you find yourself in violation of state law, that’s a felony, potentially. But if you are going against EMTALA, well, maybe it’ll be reported, maybe it won’t be. Maybe you’ll be fined or penalized by the federal government, but maybe you won’t be. And that creates a real challenge for patients in particular because they are once again caught in a situation where they need emergency medical care, and the incentives are against hospitals providing it.

Ollstein: The Biden administration has not been transparent on how many complaints have been filed, how many hospitals they’ve investigated, what measures they’ve taken to make hospitals correct their behavior, whether they’ve come into compliance or not, whether they are getting these penalties, including losing Medicare status, which is one of the most severe penalties possible.

We just don’t know. And so they say they’re making this big focus on EMTALA enforcement, but we are not really seeing the evidence of that. And the only way we even know anything is happening is when the patients themselves are choosing to disclose it, either to advocacy groups or the media.

Rovner: Or the Democratic National Convention, where we saw several of these stories. It is a continuing theme as we go forward. Well, moving on. While we were celebrating the 50th anniversary of ERISA [Employee Retirement Income Security Act] here on “What the Health?” last week — and if you did not hear that special episode, I highly recommend it — the Biden administration unveiled negotiated prices for the first 10 drugs chosen under the new authority granted by the Inflation Reduction Act.

It’s hard to tell how much better the prices that they got are because so much of the information remains proprietary. But Joanne, what’s the reaction been, both in the drug industry and larger in the political realm?

Kenen: The drug industry obviously doesn’t like it. This is only 10 drugs this year, but it’ll be more in the future. Look, I’m not so sure how well that message has gotten through yet. The Medicare drugs came under what ended up being called the Inflation Reduction Act. There’s several measures in it. There’s protection for everybody in Medicare, how much you spend on drugs in a year, it’s $2,000. That’s it. Which is a big difference from what some of the out-of-pocket vulnerabilities people had in the past.

When you look at the polls or you look at interviews with undecided voters, you wonder who’s paying attention other than us? The Democrats have wanted this for more than 20 years. Twenty years is a conservative estimate. I mean, it was part of the fight over what became the Medicare Modernization Act in 2003.

They fought for it every year. They lost every year. They finally got it through. So the idea of having Medicare negotiating drug prices is a huge victory for the Democrats. Ten drugs, not a big deal for the industry, but they know something changed. They will fight every opportunity for a lawsuit or a lobbying campaign or blocking a new regulation or the next round of negotiations.

This is going to be probably just like these annual fights we have about physician pay. This’ll be an annual fight about how much can PhRMA punch back. That would assume that a Democrat wins and that these policies don’t get rescinded. It’s a big deal. It’s not a big deal for individual pocketbooks yet, but it’s a big, big deal on the balance of power between PhRMA, which is so powerful, and the federal government, which pays for these drugs.

Rovner: I’m reminded of a sentence I wrote about the Medicare Catastrophic Coverage Act, which was passed and repealed much at the behest of the drug industry because it had what would’ve been the first Medicare outpatient drug benefit ever. And I wrote, the drug industry fought this tooth and nail because they were concerned that if Medicare started covering drugs, they would want to have some say in how much they cost. That was, I think, 1989.

Kenen: Right.

Rovner: And here we are, however many years later it is.

Kenen: It’s really hard to take away a benefit, as the Republicans learned when they spent all that energy trying and failing to repeal the ACA. Once people have a benefit, it’s hard to say, “Whoops! No more.” However, that doesn’t mean there’s not fights about technical matters or how the regulations are worded or how deep discounts are or what other things they could get in exchange that make up for the losses on this.

I mean, PhRMA is really a huge lobby, hugely influential, and sympathetic in some ways because they do create a pro … — unlike something like tobacco — they do create products that saves our lives, right? And their argument, innovation, and those arguments resonate with people. But I don’t really see this turning back. I don’t think any of us can predict how PhRMA will regain some of the influence that it did lose in this battle.

It’s certainly not permanent defeat of PhRMA. I mean, PhRMA is powerful. PhRMA has allies in both parties. But this was a huge victory for the Democrats. They got something after 20-plus years.

Rovner: Well, finally this week, earlier this spring we talked at some length about the Biden administration’s Federal Trade Commission proposal to ban noncompete clauses, which in health care often applied to even the lowest-level jobs. It was supposed to take effect Sept. 4, but a federal district court judge in Texas has ruled in favor of the U.S. Chamber of Commerce that the agency lacks the authority to implement such a sweeping rule.

And the appeals court there in the 5th Circuit is notoriously conservative and unlikely to overturn that lower-court decision even if Vice President Harris wins and becomes president. Are we just going to continue to see every agency effort blocked by some Trump-appointed judge in Texas? That seems to be what’s happening now.

Ollstein: I mean, I think especially with the recent Supreme Court rulings on Chevron, I think we’re just … I mean, that plus the makeup of the judiciary means that executive power is just a lot more curtailed than it used to be. Theoretically, that should apply to both parties to whoever is president, but we have seen courts be very politicized and treat different things differently. So I think that it will be a special challenge for a Democratic or progressive administration to push those policies going forward.

Rovner: And of course in Texas, as we have pointed out on many occasions, there are all these single-judge districts, where if you file in certain places you know which judge you’re going to get. I mean, it’s the ultimate in judge shopping.

Luthra: I was just thinking about [U.S. District Judge] Reed O’Connor and [U.S. District Judge] Matthew Kacsmaryk, two names that listeners know well.

Rovner: Yes, that’s right. And this was a third judge, by the way. This was neither Reed O’Connor nor Matthew Kacsmaryk in this case.

Ollstein: But a secret third thing.

Rovner: A secret, a secret third thing.

Kenen: I mean, what Alice just referred to as the Supreme Court reducing the power of the regulators, and they said Congress has to pass the laws. You’re not going to get something this sweeping through Congress. But could you end up getting bits of it written into legislation about hospital personnel or doctors or things like that? I can see nibbles added in certain fields. And also you’re going to see some of it at the state level. I’m pretty sure Maryland has passed some kind of a noncompete.

Rovner: Yeah, there are states that have their own noncompete laws.

Kenen: I think they’ll go at it piecemeal. They may not be able to do anything that huge, all noncompetes, but by profession, or sector by sector, I think they may try to keep nibbling away at it. But the effort that we saw is gone.

Rovner: I mean, just to broaden it out, obviously this was something that the Biden administration has relied on the power of the FTC, the Federal Trade Commission, something that the Biden administration has highlighted. It’s something that I think Vice President Harris is relying on going forward. So this is probably not a good sign for wanting to make policy in this way.

See, nods all around. All right, that is this week’s news. Now we will play my “Bill of the Month” interview with Tony Leys, and then we will come back and do our extra credits.

I am so pleased to welcome to the podcast my KFF Health News colleague Tony Leys, who reported and wrote the latest KFF Health News-NPR “Bill of the Month.” Tony, welcome back to “What the Health?”

Tony Leys: Hi, Julie.

Rovner: So tell us about this month’s patient: who she is, where she’s from, and what kind of medical care she got.

Leys: The patient is Jamie Holmes, who lives in Washington state. In 2019, she went to a surgical center to have her fallopian tubes tied. While she was on her anesthesia, the surgeon noticed early signs of endometriosis, a common condition in which fibrous tissue grows in and around the uterus. The surgeon took care of that secondary issue. Holmes said he later told her the whole operation was done within the allotted time for the original surgery, which was about an hour.

Rovner: As one who’s had and knows a lot of people who’ve had endometriosis, it is extremely painful and very difficult to treat. So medically, at least this story seems to have a happy ending, a doctor who was on his toes spotted an impending problem and took care of it on the spot. But then, as we say, the bill came.

Leys: The bill came. The surgery center billed her for two separate operations, $4,810 each.

Rovner: So even though she only went under anesthesia once and simply had two different things done to her at the time.

Leys: Right. And the surgery center is the place that does the support work for the operation. And there was just one operation.

Rovner: So obviously she figured this must be a mistake and complained. What happened?

Leys: She thought once she explained what really happened, they would go, “Oh,” and they would fix it. But that didn’t work. And after adjustments and the insurance payment for the one operation, they said that she still owed the surgery center $2,605, and she said, “Nope.”

Rovner: This was in 2019. So obviously things have happened since then.

Leys: Right. The bill was turned over to a collections agency, which wound up suing Holmes last year for about $3,800, including interest and fees.

Rovner: Now, to be clear, Jamie says she doesn’t object to paying extra for the extra service that she got. What she does object to is being charged as if it was two separate surgical procedures. So what happened next?

Leys: I mean, she joked that it was as if she went to a fast-food restaurant and ordered a value meal, ended up with one extra order of fries and then got charged for two full meals. The collections agency went to court. They asked for a summary judgment, which could have allowed the collection agency to garnish Holmes’ wages.

But she went to a couple of court hearings and explained her side, and the judge ruled last February that he wasn’t going to grant summary judgment to the collection agency. And if it really wanted to pursue the matter, it would have to go to trial. And she has not heard from them since then.

Rovner: Because presumably it would cost them more to go to trial than it would to collect her … however many couple of thousand dollars they say she still owes, right?

Leys: That could certainly be the explanation. We don’t know.

Rovner: So what’s a takeaway here?

Leys: The takeaway is if you get a bill that’s totally bogus, don’t necessarily pay it. Don’t be afraid to fight it. And if someone sues you, don’t be afraid to go to court and tell your side of it.

Rovner: Yeah, because I mean, that’s mostly what happens is that these collection agencies go to court, nobody shows up on the other side, and they get to start garnishing wages, right?

Leys: Exactly. That’s probably what would’ve happened here.

Rovner: She didn’t even have to hire a lawyer. She just showed up and told her side of the story.

Leys: And her take on it is she could have arranged to pay it. It’s not a huge, huge amount of money. But she just wasn’t going to do it. So she stood her ground.

Rovner: And as we pointed out, she was willing to pay for the extra order of fries. She just wasn’t willing to pay for an entire second meal that she didn’t get.

Leys: Right. I mean, she told me, “I didn’t get the extra burger and drink and a toy.”

Rovner: There we go. So basically fight back if you have a problem, and don’t be afraid to fight back.

Leys: Exactly.

Rovner: Tony Leys, thank you so much.

Leys: Thanks, Julie.

Rovner: OK, we are back. It’s time for our extra credits. That’s when we each recommend a story we read this week we think you should read, too. Don’t worry if you miss the details. We will include links to all of these stories in our show notes on your phone or other device. Alice, you chose first this week. Why don’t you go first?

Ollstein: Sure. So I had an interesting piece from The Wall Street Journal by Theo Francis and Melanie Evans called “The Fight Against DEI Programs Shifts to Medical Care.” So we’ve seen this growing effort from conservative activists to go after so-called DEI [diversity, equity, and inclusion] programs, to go after affirmative action, to go after a lot of various programs in government and in the private sector that take race into account when allocating resources.

And so now this is coming to health care where you have a lot of major players. This story is about a complaint filed against the Cleveland Clinic. But throughout health care, you have efforts to say, OK, certain racial groups and other demographics have higher risk and are less likely to get treatment for various diseases. This one is about strokes, but it applies in many areas of health care. And so they have created these targeted programs to try to help those populations because they are at higher risk and have been historically marginalized and denied care. And now those efforts are coming under attack. And so it’s unclear. So this is a federal complaint, and so the federal government would have to agree with it and take action. I don’t think that’s super likely from the Biden administration to crack down on a minority health care program. But this could be yet another thing people should keep in mind regarding the stakes of the election because a conservative administration could very well take a different approach.

Rovner: Shefali.

Luthra: My story is from The Washington Post. It is by Ariana Eunjung Cha, and the headline is “Weight-Loss Drugs Are a Hot Commodity. But Not in Low-Income Neighborhoods.” I think this is a really smart framing and it gets at something that folks have been worried about for a long time, which is that we have these revolutionary drugs like Ozempic and Wegovy. They show massive improvements for people with diabetes, for people with obesity. And they are so expensive and often not covered by Medicaid. Or if you are uninsured, you cannot get them. And what this story gets at really …

Rovner: If you’re insured, you can’t get them in a lot of cases.

Luthra: It’s true. What I love about this story is it sets us in place. It takes us to Atlanta and helps us see in the different parts of the city, based on income, on access to all sorts of other, to use the jargon, race, social determinants of health, obesity and diabetes are already very unequal diseases. They hit people differently because of access to safe places to exercise, walkable streets, affordable groceries, time to cook, all of that. And then you add on it another layer, which is this drug that can be very helpful is just out of reach for people who are already at higher risk because of systemic inequalities. The story also gets into some of the more social challenges that you might see from a drug like Ozempic. People saying, “Well, I know that rich people get that drug, but how do I know they would be giving the same thing to me? How do I know that the side effects will not be really damaging down the line because these drugs are so new?” And what it speaks to, in a way that I think we’re seeing a lot more journalism do very intelligently, is that there are going to be very real challenges — economic and cultural and social and political — to helping these drugs have the impact that they were touted as potentially able to have.

Rovner: Indeed. Joanne.

Kenen: Well, after that amazing moment with Gus Walz and his dad on the convention floor, I looked up the quick 24-hour coverage of what was going to best explain what a nonverbal learning disorder is and a little bit about who Gus Walz is. And Natalie Eilbert of The Milwaukee Journal Sentinel did a nice piece [“Who Is Gus Walz and What Is a Non-Verbal Learning Disorder?”]

Nothing I read yesterday answered every question I had about this particular processing disorder, but this was a good one and it explained what kind of things kids with these kinds of issues have trouble comprehending, and also what kind of things they’re really good at. This is not a learning disability. You can be really, really smart and still have a learning disability.

There’s actually an acronym, as there always is, which is GTLD: gifted and talented and learning disabled. Much of the country responded really warmly, as we all saw, and some of the country did not. But in terms of just what is this disorder and how does it affect your ability to communicate, which is part of what it is, understanding language cues, Natalie Eilbert did a good job.

Rovner: And no matter what you can be proud of your dad, particularly when he’s just been nominated to run for vice president. All right, my extra credit this week is from The New York Times. It’s called “Hot Summer Threatens Efficacy of Mail-Order Medications.” And it’s something I’ve been thinking about for a while because packages get subjected to major extremes of temperature in both the summer and the winter.

Indeed, now we have studies that show particularly that heat can degrade the efficacy and safety of some medications. One new study that embedded data-logging thermometers in packages found that those packages spent more than two-thirds of their transit time outside the recommended temperature range.

While the FDA has very strict temperature guidelines for shipping and storing medications between manufacturers and wholesalers and pharmacies, once it leaves the pharmacy it’s apparently up to each state to regulate. Just one more unexpected consequence of climate change.

OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, I’m @jrovner. Shefali, where are you these days?

Luthra: I am on the former Twitter platform @shefalil.

Rovner: Alice?

Ollstein: On X @aliceollstein.

Rovner: Joanne?

Kenen: On X @JoanneKenen and on Threads @JoanneKenen1.

Rovner: Before we go, a quick note about our schedule. We are taking next week off. I’m going to the beach. The week after that, we’ll have a very special show from The Texas Tribune TribFest in Austin. We’ll be back with our regular panel and all the news we might’ve missed on Sept. 12. Until then, be healthy.

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KFF Health News' 'What the Health?': Happy 50th, ERISA

The Host

Julie Rovner
KFF Health News


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Read Julie's stories.

The Host

Julie Rovner
KFF Health News


@jrovner


Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

On September 2, 1974, President Gerald Ford signed into law the Employee Retirement Income Security Act, better known as ERISA. While the law was primarily intended to regulate and protect worker pensions, it also fundamentally changed how health insurance is provided and regulated in the United States. Fifty years on, ERISA plays a role in nearly every detail of health insurance and has had a profound impact on the entire health care sector.

To note this anniversary, in this week’s special episode of KFF Health News’ “What the Health?”, host and KFF Health News chief Washington correspondent Julie Rovner discusses the law’s past, present, and future with three experts on ERISA: Larry Levitt of KFF, a health information nonprofit that includes KFF Health News; Paul Fronstin of the Employee Benefit Research Institute, a nonprofit; and Ilyse Schuman of the American Benefits Council, a trade group advocating for employers that sponsor worker benefit plans.

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Transcript: Happy 50th, ERISA

KFF Health News’ ‘What the Health?’ Episode Title: ‘Happy 50th, ERISA’ Episode Number: 360Published: Thursday, Aug. 15, 2024

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.] 

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News. Usually, I’m joined by some of the best and smartest health reporters in Washington, but today, we have a special episode for you. We’re taping this week on Monday, Aug. 12th, at 2 p.m. As always, news happens fast, and things might’ve changed by the time you hear this — although this time, I hope not. So here we go.

So if you follow health policy, you’re likely familiar with the big federal laws that have shaped how health care in the U.S. is organized and delivered and paid for. Medicare and Medicaid in 1965, HIPAA in 1996, and the Affordable Care Act in 2010, just to name a few.

One you may not have heard as much about is ERISA, the Employee Retirement Income Security Act, which was signed in 1974 by then-President Gerald Ford. This fall marks 50 years since ERISA became law. ERISA, as its name suggests, is mostly about protecting pension benefits for workers. It was inspired, at least in part, by the collapse of a pension fund when a plant that built Studebaker cars in Ohio shut down in 1963. But, at least as legend has it, at the very last minute in the House-Senate Conference in 1974, someone decided to add health benefits to ERISA’s scope, and that literally changed the entirety of how health benefits are regulated in the U.S.

I am pleased to have an all-star panel here to join us to talk about what ERISA has meant to health policy and what it’s likely to mean going forward as it begins its second half-century. Larry Levitt is executive vice president for policy here at KFF and one of only a few people in the organization even nerdier than I am about things like ERISA. Paul Fronstin is director of health benefits research at the Employee Benefit Research Institute, a nonpartisan think tank that does research and education. Paul has also taught me more about ERISA over the years than probably any other single person.

Finally, Ilyse Schuman is senior vice president of the American Benefits Council, which represents large employers and other providers of health and retirement benefits through employer-sponsored plans. Ilyse also spent several years on Capitol Hill working on the Senate committee that oversees ERISA policy. So, a lot of knowledge here in our podcast box. Thanks for all of you for being here.

Ilyse Schuman: Thank you

Larry Levitt: Great to be here.

Rovner: So let’s start at the beginning. How did health benefits wind up being covered in a law that was aimed at retiree pensions?

Paul Fronstin: None of us were here or there at the time, so I think anything we know is second- or third-hand information. And like you said, the provision was inserted at the last minute, but I think there were a lot of conversations about it leading up to it being inserted at the last minute. I think a lot of it had to do with some tensions between state regulation and federal regulation, because there were self-insured health plans in existence and self-insured benefits more generally in existence before ERISA passed.

And clearly those plans wanted some federal protection regarding what they were doing, and the states wanted more regulation. And I’ve read a little bit about this over the years, and there was certainly some lobbying for and against having a provision in there to protect self-insured plans from state regulation. So the conversations were happening. It just … the language probably just didn’t make it into the legislation till the last minute.

Schuman: And I think certainly the landscape back in 1974, as Paul talked about, was that more and more states were creating, with respect to health care, their own versions of various laws. And so self-funded plans, large employers like our members — a number of them were back in existence 50 years ago, some weren’t — were finding it increasingly difficult to be able to administer their self-funded plans on a uniform basis nationwide.

So it wasn’t in the backrooms when they were actually drafting the legislation, but certainly note that the nationwide landscape in this growing patchwork of state health laws was becoming increasingly problematical for self-funded health plans.

Levitt: Yeah. I mean, this was also a period when health insurance was changing quite dramatically. I mean, before this time health insurance was pretty simple. It was called indemnity insurance, right.

You went to the doctor, you went to the hospital, you got a claim, you filed it with your insurance company, and they paid 80% of it. This was a time when PPOs [preferred provider organizations] were starting, managed care, HMOs were really just getting their start. So there was a need for much more regulation because insurance was getting more complicated.

Fronstin: Yeah. To some degree, the HMO Act of, what, 1973, right, just the year before. So HMOs were just coming on the scene, and that may have played into this as well.

Rovner: So back in 1945, when really none of us were in the room, Congress passed something called the McCarran-Ferguson Act, which was supposed to ensure that states rather than the federal government retained the authority to regulate insurance. What happened in ERISA to change that? Ilyse, I think you were already sort of referring to this. And what do we mean when we talk about ERISA preemption? That’s a phrase that people hear a lot and their eyes glaze over.

Schuman: Sure. Well, their eyes may glaze over but it really is foundational to millions of Americans and their families that are covered by employers who decide that they want to self-fund their plans. That means that they’re the ones that decide that, “Hey, we’re going to take the risk as offering these benefits instead of the carrier.”

Rovner: So they’re not actually buying insurance because …

Schuman: That’s …

Rovner: … they’re paying the bills.

Schuman: They’re doing more than just paying the bill. They’re the ones that are ultimately assuming the risks of those claims, too. And I think the value. So maybe — just to step back before we talk about what a preemption is — is what we talk about employers who decide to self-fund versus those that don’t. Admittedly, many of those that self-fund are larger employers, but again, they say that “We will take the risk of paying for the claims of our health insurance coverage instead of the carrier. But along with that, we get the flexibility and we get the ability to design and implement health coverage that we think meets the needs of our population. That’s enabled us to” — speaking again from self-funded employers — “to implement innovative designs with the assurances that they could implement those, they could administer that on a uniform basis nationwide.” So that’s really what we’re talking about. Preemption is the ability of self-funded employers to administer those benefits on a uniform basis nationwide.

And yes, getting back to McCarran-Ferguson, and if you want to talk through the sort of various layers of ERISA preemption, is there’s something called the savings clause, which is OK. So ERISA says: “First threshold level, we are going to preempt state laws.” But there’s a savings provision that says basically: “If you’re in the business of insurance, states can regulate that.” But then there’s this deemer clause — this is really nerdy now, so some of your audience may be wondering here what we’re talking about …

Rovner: I remember learning this many, many years ago.

Schuman: No. Yeah. So if you’re in law school, take note that the deemer clause means that self-funded group health plan is deemed not to be in the business of insurance; meaning that they don’t have to comply with those state insurance laws.

Levitt: And here’s where this gets really tangible for people, right? So 150 million people have insurance coverage through an employer. It’s the biggest source of health coverage. But 65% of them are in self-insured plans, like Ilyse was talking about. And those self-insured plans are exempt from state regulation.

So if a state is regulating insurance, let’s say mandating benefits, mandating coverage of IVF, mandating coverage of preventive care, mastectomies, whatever — those regulations that states are putting in place do not apply to most people with employer-sponsored insurance because they are in these self-funded plans.

Rovner: And, of course, the continuing complications that a lot of people who are in these self-funded plans don’t know it because they have an insurance card and it says Blue Cross or Aetna or whatever, because, in their case, they have an insurance card, but the insurer is not providing insurance, right?

Levitt: No, it’s remarkable. We did a survey of consumers about their experiences with health insurance. And we asked them, “What government agency do you think you would turn to with a problem with your insurance?” And literally zero people said the Department of Labor, which is the government agency that actually enforces ERISA.

Rovner: But I guess what I was asking about are third-party administrators, which I think most people have never heard of until they discover that they’re not subject to their state’s requirement.

Levitt: Absolutely. I mean, it gets really confusing, right? Because it might be that UnitedHealthcare is administering this self-funded plan, but you, as an employee in this plan, have no way of really understanding is that a self-insured plan administered by UnitedHealthcare? Or is that an insurance plan administered by UnitedHealthcare? And then there are these third-party administrators that you’ve never even heard of that are administering them for many employers.

Rovner: Paul, you wanted to add something.

Fronstin: We need to distinguish between ERISA and self-insured plans, right, because they’re not one and the same. ERISA also covers fully insured plans.

Schuman: Right.

Fronstin: So fully insured plans are regulated both by ERISA and at the state level. And then you’ve got some self-insured plans like government plans that are not covered by ERISA, right? But they’re self-insured. So it’s even more complicated than what we’re making it out to be when we talk about ERISA, preemption, and self-insurance. That’s just one aspect of ERISA.

Schuman: And I think to the point about employees not sure what covers them, what doesn’t cover them. Again, for self-funded large employers, I mean, I think most of the employees understand from their employer, from the group health plan, what the terms of the plan are, and what the benefits are. And I think in some ways, perhaps less complex than, OK, if you’re an employee working in Kentucky, you have one plan. If you’re an employee working in New York, you have another plan. And employees talking to each other and saying, “Hey, how come you have that and I don’t have this?”

So I think that the clarity or the consistency is important not just for employers who are administering the plan, but for employees understanding what the terms of the plans are. And also, two things about sort of the benefits and what’s covered. There’s a difference between a state saying, “OK, you have to cover this benefit and have to cover it in precisely this way” versus employers who say, “Look, it’s really important for our population, to be healthy and productive, to have these benefits, and so we’re going to offer this benefit. We’re just going to do it in the same way nationwide.”

And remember, ERISA, if the federal government, as it has done over the past, wants to make changes to … that are applicable to group health plans, it can amend and has amended ERISA to do that. So the market reforms, for example, in the Affordable Care Act, were applicable, and the Public Health Service Act, were sort of incorporated into ERISA. The Genetic Information Nondiscrimination Act, for example, amended ERISA. So it’s like that’s the lever to make changes to ERISA that will be applicable to self-funded plans as well is at the federal level.

Rovner: When I was first covering Congress in the 19… late-1980s and early-1990s, you didn’t go there. If you wanted to do something about health policy, you didn’t touch ERISA. I think lawmakers were afraid of reopening it and getting into all kinds of fights. Why did that finally change?

Levitt: I mean, I think there was a growing recognition, particularly with the Affordable Care Act, that there were just some minimum thresholds that health coverage had to meet to be legitimate coverage. So if you look at what the ACA did, and as Ilyse said, those applied to all employers, all group health plans through the amendments to ERISA.

And these were things like no preexisting condition exclusions, coverage of preventive services with no patient cost sharing, no annual on lifetime limits, a cap on out-of-pocket costs. And probably the most popular provision of the ACA, coverage of dependents up to age 26. There was no way to reach everyone with insurance without amending ERISA under the Affordable Care Act.

Fronstin: Yeah. But there were examples, pre-ACA, that affected all plans, or most plans, like mental health parity we didn’t mention. Well, there’s been a couple of instances of that. And certainly the Clinton health plan tried this and didn’t succeed in the early 1990s.

Rovner: And HIPAA …

Levitt: I mean …

Rovner: … which was, I guess, the first major walk into ERISA since ERISA had been passed.

Levitt: Right. Or even COBRA. The ability to continue your insurance after you leave an employer was an amendment to ERISA.

Rovner: That’s right. And that was in 1986.

Fronstin: Yeah, and even that could be confusing because it exempts smaller employers, right. But you got the mini-COBRA laws at state level that affect some of those employers, but not every state has one.

Rovner: Yeah. And Paul, you were referring to this. We should probably talk about who’s not subject to ERISA because I don’t think anybody mentioned church plans. There’s a rule, and then there’s all these exceptions.

Fronstin: I think the two major categories are church plans, and I’m not sure we even have a good handle on how many people are covered by church plans because a lot of them tend to be small businesses, and they may not even offer coverage. And federal, state, and local government. I’m not sure if there’s another category in there that’s not covered by ERISA. I believe that the state and local governments have their own law that’s similar to ERISA, but it’s not ERISA.

Schuman: And I think when we talk about covered by ERISA, certainly it’s, What does ERISA afford? It’s not just about self-funded employers being able to offer uniform benefits nationwide. There are important protections. There are important disclosure requirements for employees, for participants that are included in there that are applicable to all ERISA plans, self-funded and insured plans, and obviously on the retirement plans, too.

But I just think it’s really important that we look to see the idea behind ERISA was that, yes, there will be this uniformity for self-funded plans. But for all ERISA plans, there are these protections and safeguards in there that are embedded in the law for the benefit of participants.

Rovner: And that’s why you used to get a phone-book-thick, “This is your plan documentation.” Now, it’s all online, and it’s all in 4-point type. But that’s where that comes from, right? At the requirement that you be told everything that your plan covers.

Schuman: Right. Correct.

Rovner: So, Larry, you kind of referred to this earlier. Self-funded ERISA plans are regulated not by the states but by the Department of Labor, which most people don’t know. And for a long time, if you were injured or someone died as a result of being denied care, the only thing that they could recover was the cost of the care that was denied. Not any damages for what happened. When did that finally change? And has it finally changed? What do you do now if you’re injured — you can’t go to your state regulatory agency?

Levitt: No, there have been some changes to that, but enforcement of ERISA is still relatively light at the administrative level compared to what state insurance departments do. And the Department of Labor just seems very far away to people compared to a state insurance department.

I think it’s really this structure of ERISA that, Julie, you said people were always resistant to amending in Congress, that has been resistant to amendment, right? I mean, this idea that states regulate insurance directly but that states cannot regulate group health plans under ERISA. And that’s had far-reaching health policy implications. So states looking to do employer mandates or anything that directly affects those group health plans, employer health plans, and that’s maybe …

Rovner: Also, states looking to do single-payer plans, right?

Levitt: Yeah. No, I mean, single-payer there might be some ways around ERISA through single-payer and taxation, but ERISA has been a barrier to state health reform efforts, for better or for worse.

Schuman: If maybe we can just step back 50 years, I think it’s … I wrote down this quote from one of the authors of ERISA, specifically on the ERISA preemption, and that was by Rep. John Dent, who was a Democrat from Pennsylvania who identified the ERISA preemption as the law’s crowning achievement.

And he said it was the crowning achievement because, without it, the legislation would not have enjoyed the support of both labor and management since it’s so fundamental for the ability of multistate employers to sponsor benefit plans to workers nationwide. So I think just kind of getting back into the minds of the drafters of ERISA, that bargain, if you will, that became ERISA preemption was really foundational to the law passing.

Rovner: And you could see why it would make sense. If you work for a national company and you get transferred from one state to another, your insurance shouldn’t change dramatically.

Schuman: Yeah. And I think fast-forward 50 years, and we’ve got, certainly, post-pandemic or after the pandemic, an increasingly mobile and remote workforce. And we have heard repeatedly about how ERISA preemption really promotes that worker mobility and the ability to work out of your house in another state or to be able to transfer from one location to another.

So think a little bit if we just see how the workforce itself has evolved, I think that ERISA preemption provision may become even more important. And I think increasingly, it’s not just large employers that find themselves — like nationwide or multistate employers — but because the workforce is more remote and mobile, and wants to be, that more and more employers of multistate employers, too.

Levitt: I would say we have increasingly seen smaller employers self-funding, and there are some advantages to that, right? They don’t necessarily have to pay premium taxes to states, and they are exempt from state benefit mandates that apply over and above beyond the Affordable Care Act. I mean, insurers have come up with very creative ways of allowing smaller businesses to self-fund and avoiding some of the risk by layering lots of reinsurance on top of that.

Fronstin: I was going to say, along with self-funding comes ease of administration here. Ilyse, you call it uniformity of benefits. But I think of employers, they don’t want to be offering 50 different health plans in 50 different states. And to the degree you’ve got the states doing something — whether it’s a single-payer or something short of that — employers, they just want to offer everyone the same benefit and make it as easy as possible to do so.

And my concern is if they had to comply with 50 different state laws to do so or create 50 different benefit plans, especially today with the ACA guaranteed issue and subsidized coverage, you’ll get to the point where if employers didn’t have the ability to provide one benefit plan across all 50 states, they’re not going to do it anymore, right? They’ve got … pre-ACA might’ve been different, but now they’ve got an alternative where their employees could get coverage if they didn’t offer coverage themselves.

Rovner: So that was all predicted. This huge movement away from employer-provided coverage after the ACA passed was predicted, and it didn’t happen.

Fronstin: I was one of those people predicting it. Yeah. Before the ACA passed, I was one of those people predicting it. And I think what happened is: One, being employers, they still value the benefit. They still understand there are business reasons to offer it, and they haven’t had a good excuse to get rid of it.

We haven’t had — other than the recession tied to covid — we haven’t had a recession. Our unemployment rate has been at historically low rates. And I think employers, they don’t want to mess with something that’s working for the most part because they use it to recruit and retain employees for the same thing they were doing back in the 1940s and ’50s when they first started offering it.

Schuman: I think it’s important to delineate the employer voice in here. And I think maybe there’s a perception that employers are just writing the checks or employers and health plans are kind of conflated. But employers are doing a lot more than just writing a check. And I think those, again, that have decided to self-fund want to be able to have control over how they’re spending their health care dollars. So again, they can try to drive more affordable, higher-value, higher-quality health care.

And so it’s not just about who writes the check, but the reasons behind employers saying, “Hey, we’re going to be spending … we spend a whole lot of money on our health benefits because we recognize that it’s good business. It’s good for employees. But we want to be able to have the ability to try to drive improvements in that to drive higher-value care.” And so that’s enabled by ERISA. So the health reforms and the health innovation, certainly there’s a lot coming from the states, but there’s a lot coming from employers, too.

Rovner: So what are the big issues going forward for ERISA? I mean, obviously, there’s still, if you Google ERISA, you get all kinds of lawsuits and challenges. And I mean, it’s still a very lively part of the law 50 years on.

Levitt: I mean, I think, Julie, you mentioned these lawsuits, and that is potentially a big issue going forward. Something called the Consolidated Appropriations Act added some transparency in fees that self-insured employer plans paid to providers. And that’s opened the door to some lawsuits challenging whether group health plans, ERISA plans, are acting as appropriate fiduciaries in trying to get the lowest costs, particularly for prescription drugs. And these started out as kind of a fringe movement, but I think pose some potential risks for group health plans.

Rovner: Ilyse, what are employers most concerned about?

Schuman: Well, I think that employers seeing the growing number of states that are trying to chip away, if not erode in a fundamental way, ERISA preemption is really alarming. A lot of these efforts have come up around pharmacy benefit managers and efforts to regulate pharmacy benefit managers at the state level.

But the way that they’ve done it, the states have really taken direct aim at ERISA preemption and self-funded plans and, I think, has much broader implications for self-funded group health plans beyond just the PBM context. And so I think that they’re looking at the growing number of states that are interested in passing laws that really erode ERISA preemption as very alarming.

Rovner: So I want to go around the table before we end. Sort of what do you think has been the biggest impact on the health system of ERISA, both for good and for not so good? I mean, it’s certainly one of the things that makes it so confusing to understand and explain. Larry, you want to go first?

Levitt: I think the biggest impact of ERISA has been putting the brakes on some state health reform efforts. States have found ways to get around it. Some raise some issues for employers, like Ilyse was saying, but it has really circumscribed what states can do around health reform. That said, ERISA has provided a very stable regulatory environment for employers and likely allowed employer coverage to grow over time in that environment.

Rovner: Paul?

Fronstin: Yeah, I’d say, in addition to that, it’s allowed employers to be innovative. Not every self-insured employer has been innovative, right? And there’s something like a million employers out there with a thousand or more employees. And the smaller of those are not necessarily being innovative, but they’re learning from the largest ones, right? The jumbo employers, who are trying to do different things when it comes to engaging the health system, right? Engaging hospitals and physicians and pharmaceutical managers.

And I think that that … the lessons learned from what they’re doing trickles down to the smaller self-insured employers, and it trickles out to the health insurers that are offering fully insured plans to small employers.

Rovner: Ilyse.

Schuman: I think ERISA has allowed employers to provide value-driven, comprehensive, affordable, higher-quality health coverage to working families across the country — 150 million, 180 million, guess it depends what stats you’re looking at, and that it’s withstood the test of time.

And I think that probably no stressor, like the pandemic, where many wondered what would emerge from that, and with some dents, but also with a lot of silver linings in terms of employers offering benefits to help their employees navigate through the pandemic. And so I think there’s a resiliency to the employer-sponsored system coupled with the innovation that Paul has mentioned.

Rovner: Last question. Yes or no? Is ERISA going to be around in another 50 years? In other words, are we still going to have this system of health coverage? I promise I will not hold you to it. Just best guess. Larry.

Levitt: I say no.

Rovner: Paul.

Fronstin: I answer “don’t know.”

Rovner:: That’s OK. Ilyse.

Schuman: Well, I will say that I just recently got a tortoise for my family that I’ve found will live 50 or 100 years, so beyond me. So will ERISA be around as long as Veggie, the tortoise? I don’t know.

I think that there’s really an important inflection point. And I think if addressing some of the underlying drivers of rising health care costs and consolidation, I think that if those are addressed, I think employer-provided coverage certainly has the ability to withstand the test of time over the next 50 years.

Rovner: Good. Thank you all so much. This has been great.

Schuman: Thanks a lot.

Levitt: Great. Thanks, Julie.

Schuman: Thank your team.

Levitt: Thanks all.

Schuman: Bye-bye.

Fronstin: Take care, everybody.

Levitt: Bye.

Rovner: Bye. OK, that’s our ERISA anniversary show. Big thanks to our guests, Larry Levitt of KFF, Paul Fronstin of EBRI, and Ilyse Schuman of the American Benefits Council. And before we go this week, we’re looking for your help on a project here at KFF Health News. Are you a young adult confused about navigating the exchanges used to pick plans? Have you bought a plan on an ACA exchange and found that it didn’t cover care you needed? Have you married or taken a job just to get insurance? Did you decide to go without coverage?

Whatever your story, KFF Health News and The New York Times want to hear it. Email your experience to Elisabeth Rosenthal — that’s elisabethr with an S, not a Z — @kff.org. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as usual, to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at whatthehealth, all one word, @kff.org, where you can still find me. I’m @jrovner on X. We’ll be back in your feed next week. Until then, be healthy.

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7 months 3 weeks ago

Insurance, Multimedia, Audio, KFF Health News' 'What The Health?', Legislation, Podcasts

KFF Health News

Kids Who Survived Super Bowl Shooting Are Scared, Suffering Panic Attacks and Sleep Problems

KFF Health News and KCUR are following the stories of people injured during the Feb. 14 mass shooting at the Kansas City Chiefs Super Bowl celebration. Listen to how children wounded that day are dealing with their injuries or emotional scars.

Six months after Gabriella Magers-Darger’s legs were burned by sparks from a ricocheted bullet at the Kansas City Chiefs Super Bowl parade in February, the 14-year-old is ready to leave the past behind.

She is dreading the pitfalls of being a high school freshman, even as she looks forward to being back with friends and at color guard, dance, and volleyball. She might even join the wrestling team to get some respect at school.

But the past remains ever present.

At a July Fourth gathering, a family friend brought noise-canceling headphones in case the fireworks became too much. Earlier in the summer Gabriella had a hard time viewing a relative’s gun collection, the handguns in particular. And she hyperventilated when she saw a family friend’s finger after it was sliced by accident — the sight of blood reminds her of seeing a fatally wounded Lisa Lopez-Galvan minutes after she was shot outside Union Station, the only person killed that day.

Her mom, Bridget Barton, said Gabriella has had a chip on her shoulder since the parade.

“She’s lost some softness to her, some gentleness to her,” Barton said.

Children are particularly vulnerable to the stresses of gun violence, and 10 of 24 people injured by bullets at the Feb. 14 parade were under 18 years old. Countless more children like Gabriella experienced the trauma firsthand. They’ve endured fear, anger, sleep problems, and hypersensitivity to crowds and noises.

A 15-year-old girl who was shot through the jaw and shoulder effectively dropped out of school for a time and daily panic attacks kept her from summer school, too. An 11-year-old boy shot in the side described feeling angry at school for reasons he couldn’t explain. A 5-year-old girl who was on her father’s shoulders when he was hit by gunfire panics each time her dad feels sick, fearing he has been shot again.

“She’s not the same kid. I mean, she’s definitely not,” said Erika Nelson, mother of the 15-year-old, Mireya, who has scars on her jaw and face. “You never know when she’s going to snap. You never know. You might say something or someone might bring up something that reminds her of that day.”

Guns overtook motor vehicle accidents as the leading cause of death for children in 2020, but a far higher number of kids are hit by gunfire and survive. Research suggests that kids sustain nonfatal firearm injuries anywhere from two to four times more often than they are killed by guns.

Scientists say the long-term effects of gun violence on kids are little researched and poorly understood. But the harm is pervasive. Harvard and Massachusetts General Hospital researchers found that during the first year after a firearm injury, child survivors experienced a 117% increase in pain disorders, a 68% increase in psychiatric disorders, and a 144% increase in substance use disorders. The mental health effects spill over — to mothers, fathers, siblings.

For many affected by the shooting in Kansas City, Missouri, the triggers began right away.

‘I Get Mad Easily’

Just 10 days after Samuel Arellano was shot at the parade, he attended another big sporting event.

Samuel was invited to attend a University of Kansas men’s basketball game at Allen Fieldhouse in Lawrence. During a break in the game, with a video camera pointed at Samuel and his parents, former KU star Jalen Wilson appeared on the scoreboard and addressed him directly.

“I heard about your story,” Wilson, who now plays in the NBA, said on the big screen. “I’m so very thankful that you are here today and it is a blessing that we can have you to give you the love and support you truly deserve.”

Wilson asked the 16,000 fans in attendance to stand and give Samuel a round of applause. As the crowd clapped and an announcer bellowed about him being a “brave young man,” Samuel looked at his parents, then down at his feet, smiling shyly.

But minutes later when the game resumed, Samuel started to cry and had to leave the auditorium with his mom, Abigail.

“When it got pretty loud, that’s when he started breaking up again,” his dad, Antonio, said. “So she had to step out with him for a minute. So any loud places, if it’s too loud, it’s affecting him.”

Samuel, who turned 11 in March, was shot in the ribs on his right side. The scar on his back is barely noticeable now, but lingering effects from the parade shooting are obvious. He is seeing a therapist — as is his father, though Abigail has had a tough time finding a Spanish-speaking one and still hasn’t had an appointment.

Samuel had trouble sleeping in the first weeks after the shooting and often crawled in bed with his mom and dad. He used to get good grades, but that became more difficult, Abigail said. His personality has changed, which sometimes has shown up at school.

“I get mad easily,” Samuel said. “I [have] never been like this before but like, if they tell me to sit down, I get mad. I don’t know why.”

Traumatized children often have difficulty expressing emotions and may be given to outbursts of anger, according to Michelle Johnson-Motoyama, a professor of social work at Ohio State University.

“I’m sure for that child there is a sense of tremendous injustice about what happened,” Johnson-Motoyama said.

Especially right after the shooting, Samuel had panic attacks, Antonio said, and he’d break out in a sweat. Therapists told them that was normal. But the parents also kept him off his phone for a while, as there was so much about the shooting on the news and online.

Abigail, who works at a car dealership with Antonio, is anxious about seeing her son change, his suffering and sadness. She is also concerned for her three daughters, a 16-year-old and 13-year-old twins. Her father, Victor Salas, who was with Samuel at the parade, was also reeling in its aftermath.

“I’m crying and crying and crying about what happened,” Salas said in Spanish four days after the parade. “Because it was chaos. It doesn’t mean that families don’t love their family, but everyone took off to save their own lives. I saved my grandchildren’s lives, but what happens to the rest of the people? We’re not prepared.”

On the good side, Samuel felt very supported by the community in Kansas City, Kansas. Many people from his school stopped by in the first few days to visit, including friends and even a former bus driver, who was in tears. He has a “room full of candy,” Abigail said, mostly Skittles, his favorite.

An autographed football from Kansas City Chiefs quarterback Patrick Mahomes arrived on his birthday. It made him cry, his father said, which happens pretty often.

“There are good and bad days, days that are more normal and easier, and then there are days where the family has to be a little bit more aware and supportive,” Abigail said in Spanish. “He’s always been outgoing and talkative like his mom, but that has changed since the parade.”

Fourth of July a Weeklong Trigger

The Fourth of July was particularly harrowing for many of the young survivors and their families. Should they buy fireworks? Will they want to celebrate? And why do all the firecrackers going off in the neighborhood sound like gunshots?

Fourteen-year-old Gabriella needed help from her stepfather, Jason Barton, to light her fireworks this year, something she is ordinarily enthusiastic about doing herself. At the parade, like many people, the Barton family initially mistook the sound of gunfire for fireworks.

And Erika Nelson, a single mom in Belton, Missouri, feared even bringing up the holiday with Mireya, who has always loved Independence Day. Eventually Mireya said she didn’t want any big fireworks this year and wanted only her mom to set theirs off.

“Just any little trigger — I mean, it could be a light crackle — and she just clenched,” Erika Nelson said.

Patty Davis, a program manager for trauma-informed care at Children’s Mercy hospital in Kansas City, said even her clients who were at the parade but were not injured still flinch at the sounds of sirens or other loud noises. It’s a powerful response to gun violence, she said.

“So not just an accidental trauma,” she said, “but a trauma that was perpetrated for violent purposes, which can cause an increased level of anxiety for persons around that to wonder if it’s going to happen again. And how safe are they?”

Reliving Getting Shot

Random sounds, bright lights, and crowds can catch the kids and their parents off guard. In June, Mireya Nelson was waiting for her older sister after a dance recital, hoping to see a boy she knew give a flower to a girl everyone said he had a crush on. Her mom wanted to go, but Mireya shushed her.

“Then all of a sudden, there was a loud boom,” Erika said. “She dropped low to the ground. And then she jumped back up. She goes, ‘Oh my God, I was getting shot again!’”

Mireya said it so loudly people were staring, so it was Erika’s turn to shush her and try to soothe her.

“I was like, ‘Mireya, it’s OK. You’re all right. They dropped a table. They’re just moving stuff out. It was an accident,’” Erika said.

It took a few minutes for the shock to wear off and Mireya later giggled about it, but Erika is always on watch.

Her daughter’s early sadness — she watched movies for hours, crying throughout — has since changed to a cheekiness. Half a year later, Mireya will joke about the shooting, which tears her mother up. But maybe that is part of the healing process, Erika says.

Before the Fourth of July, Mireya went to Worlds of Fun, a large amusement park, and had a good time. She felt OK because there were security guards everywhere. She also enjoyed a visit to the local FBI office with a friend who was with her the day of the shooting. But when someone suggested a trip to the ballet, Mireya squashed it quickly — it’s near Union Station, the site of the shooting. She doesn’t want to go downtown anymore.

Erika said the doctor appointments and financial strains have been a lot to juggle and that her biggest frustration as a parent is that she’s not able to fix things for her daughter.

“They have to go their own way, their own process of healing. I can’t shake her, like, ‘Get back to yourself,’” Erika said. “It could take months, years. Who knows? It could be the rest of her life. But I hope that she can overcome a little bit of it.”

Goose Bumps in the Sweltering Heat

James Lemons noticed a change in his 5-year-old daughter, Kensley, who was on his shoulders when he was shot at the parade. Before the shooting Kensley was outgoing and engaged, James said, but now she is withdrawn, like she has closed off her bubble and disconnected from people.

Large crowds and police officers remind Kensley of the parade. Both were present at a high school graduation the family attended this summer, prompting Kensley to ask repeatedly to leave. James took her to an empty football field, where, he said, she broke out in goose bumps and complained of being cold despite the sweltering heat.

Bedtime is a particular problem for the Lemons family. Kensley has been sleeping with her parents. Another child, 10-year-old Jaxson, has had bad dreams. One night, he dreamt that the shooter was coming near his dad and he tripped him, said Brandie Lemons, Jaxson’s stepmom.

Younger children like Kensley exposed to gun violence are more likely to develop post-traumatic stress disorder than older children, according to Ohio State’s Johnson-Motoyama.

Davis, of Children’s Mercy in Kansas City, said children whose brains are not fully developed can have a hard time sleeping and understanding that they are safe in their homes at night.

James got the family a new puppy — an American bulldog that already weighs 32 pounds — to help them feel protected.

“I looked up the pedigree,” he said, “They’re real protective. They’re real loving.”

Searching for an Outlet to Let Off Steam

Gabriella took up boxing after the shooting. Her mother, Bridget, said it restored some of her confidence and control that dimmed after the parade.

“I like beating people up — not in a mean way, I swear,” Gabriella said in April as she molded a mouthguard to her teeth before leaving for training.

She has since stopped boxing, however, so the money can instead go toward a trip to Puerto Rico with her Spanish class. They’re paying $153 a month for 21 months to cover the trip. Boxing classes were $60 a month.

Bridget thought boxing was a good outlet for leftover anger, but by the end of July Gabriella wasn’t sure if she still had the drive to fight back that way.

“The past is the past but we’re still gonna all, like, go through stuff. Does that make sense?” Gabriella asked.

“You’re mostly OK but you still have triggers. Is that what you mean?” her mother asked.

“Yeah,” she replied.

After the shooting, Mireya Nelson tried online classes, which didn’t work well. The first few days of summer school, Mireya had a panic attack every day in the car and her mother took her home.

Mireya wants to return to high school this fall, and Erika is wary.

“You know, if I do go back to school, there’s a chance at school of being shot, because most schools nowadays get shot up,” Erika recalled her daughter saying. “And I’m like, ‘Well, we can’t think like that. You never know what’s gonna happen.’”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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7 months 3 weeks ago

Mental Health, Multimedia, Public Health, States, Audio, Children's Health, Guns, Investigation, Kansas, Missouri, The Injured

KFF Health News

KFF Health News' 'What the Health?': The Walz Record

The Host

Julie Rovner
KFF Health News


@jrovner


Read Julie's stories.

The Host

Julie Rovner
KFF Health News


@jrovner


Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

Minnesota Gov. Tim Walz is Vice President Kamala Harris’ choice of running mate. Walz — also a former U.S. congressman, high school teacher, and member of the National Guard — has a folksy, Midwestern affect and a liberal record. He has signed bills expanding abortion rights and medical care for transgender people as governor and represented a swing district in the House of Representatives.

Meanwhile, the number of abortions taking place in the U.S. since the overturn of Roe v. Wade continued to rise into early this year, according to a new study. That is frustrating abortion opponents, who are seeking more ways to bring the numbers down, even if it means barring pregnant women from traveling to other states.

This week’s panelists are Julie Rovner of KFF Health News, Sandhya Raman of CQ Roll Call, and Shefali Luthra of The 19th.

Panelists

Shefali Luthra
The 19th


@shefalil


Read Shefali's stories.

Sandhya Raman
CQ Roll Call


@SandhyaWrites


Read Sandhya's stories.

Among the takeaways from this week’s episode:

  • Walz has been active on health issues, including capping insulin prices, codifying access to abortion and gender-affirming care, and supporting veterans’ health, as well as challenging hospital consolidation efforts. In fact, the similarities between him and Harris highlight unity among Democrats on key health issues.
  • Meanwhile, the GOP vice presidential nominee, Sen. JD Vance of Ohio, said in an interview that reforming the Affordable Care Act would still be on the table if Trump were reelected, though he did not elaborate. The lack of specificity in the GOP’s plans leaves a lot unknown about what a second Trump administration would do with health policy.
  • A recent report shows the number of abortions continued to rise amid restrictions. How? Telehealth is a major reason for the trend. And a separate report shows hundreds of millions in taxpayer dollars have been funneled to crisis pregnancy centers since the overturn of Roe v. Wade, reflecting an effort in conservative state legislatures to steer funding to centers that discourage abortion.
  • And Congress has departed for its August recess without funding the federal government, again. Those eyeing other must-pass legislation, such as extended telehealth flexibilities and pharmacy benefit manager reform, are banking on the lame-duck session after the election.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: JAMA Internal Medicine’s “Health, Access to Care, and Financial Barriers to Care Among People Incarcerated in US Prisons,” by Emily Lupton Lupez; Steffie Woolhandler; David U. Himmelstein; et al.

Shefali Luthra: KFF Health News’ “Inside Project 2025: Former Trump Official Outlines Hard Right Turn Against Abortion,” by Stephanie Armour.

Sandhya Raman: The War Horse’s “‘I Had a Body Part Repossessed’: Post-9/11 Amputee Vets Say VA Care Is Failing Them,” by Hope Hodge Seck.

Also mentioned on this week’s podcast:

click to open the transcript

Transcript: The Walz Record

KFF Health News’ ‘What the Health?’ Episode Title: ‘The Walz Record’Episode Number: 359Published: Aug. 8, 2024

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.] 

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Aug. 8, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this, so here we go.

We are joined today via videoconference by Sandhya Raman of CQ Roll Call.

Sandhya Raman: Good morning.

Rovner: And Shefali Luthra of The 19th.

Shefali Luthra: Hello.

Rovner: No interview this week, but plenty of news for a hot summer week so we will get right to it. So for the second time in three weeks, we have a new vice-presidential nominee to talk about. Newly minted Democratic nominee Vice President Kamala Harris has chosen former congressman and current Minnesota Gov. Tim Walz to be her running mate. What do we know about Walz’s record on health care?

Raman: We know a lot. I think it’s easier to draw from his record compared to JD Vance, who was only elected for the first time in 2022. Tim Walz has had six terms in the House. He’s on his second term as governor. And from that you can see what his priorities are, how he’s drawn from his personal experience and the things that he’s been doing that are very in line with what either Biden and Harris or just Harris have done. When we had Biden, we hear a lot of talk about capping insulin costs, and that’s something that Walz signed a Minnesota bill for a few years ago. And he’s also been very active in reproductive health issues. He signed a couple abortion-related laws last year. That’s been a key focus of the Harris and Biden-Harris campaigns. He’s been active in talking about IVF and how his family has used that, also pretty in line with that.

Rovner: I love that he had a daughter using IVF, whose name is Hope.

Raman: Yeah, yeah.

Rovner: Very Midwestern.

Raman: Yes, and I think he’s also been pretty active on some of the veterans’ issues as a former member of the Army National Guard for several years. And just some of the education and health issues as a former teacher. And he signed legislation related to gender-affirming care as governor. So I think we have a pretty good idea of the types of things that he’d be interested in if they were elected.

Luthra: And I think what’s striking as well is how in line he seems to be on so many policy fronts to what we know the vice president and, frankly, what we know about the other people who were in contention for the vice-presidential nomination. And what I think that tells us is how unified a lot of the party is right now on health care and health policy issues in general. I was pretty struck by how quickly we got reactions from both pro-abortion rights groups and anti-abortion rights groups. As soon as the news came, SBA [Susan B. Anthony] Pro-Life America, one of the biggest anti-abortion groups, is quick to say this is the most pro-abortion ticket in history. They might be right.

Rovner: I was going to say it’s probably true.

Luthra: Yeah. And they could have said that about any Harris, et cetera, ticket, whether that was Walz, whether that was [Pennsylvania Gov. Josh] Shapiro, whether that was someone else from her reported list of finalists. And at the same time, what we saw from abortion rights advocates is they’re equally thrilled about this because they look at Walz as an ally. They look at the work that was done in Minnesota around getting rid of abortion bans; codifying abortion rights in the state constitution; limiting requirements like the 24-hour waiting period: That is gone in the state. And passing a shield law.

All of that underscores that he’s very in line with the vice president. I think what’s worth asking ourselves is how much does that matter when we have someone like Kamala Harris who is very interested in these issues. And in a way, we know far less about JD Vance. But whatever we could find out about him probably matters a lot more because Donald Trump has never shown much interest in health care or health policy. So if we did get a Trump-Vance ticket, it feels like there is a real possibility we’d have a lot more Vance influence in this area as opposed to Walz in a Harris-Walz administration.

Rovner: Which we’ll get to in a second. Just something that jumped out at me when I was researching this is that there’d been much made about the fact that Harris is the first presidential candidate who’s actually visited an abortion clinic. Well, so has Walz. So we’ve now got a presidential candidate and a vice-presidential candidate who have visited an abortion clinic. And I’m thinking even 15, 20 years ago on a Democratic ticket, how much the world has changed since the fall of Roe [v. Wade], that that never would’ve been something that anybody would’ve wanted to advertise. I think it speaks volumes as to really how big reproductive health is going to be going forward in this campaign.

Raman: They went together when they visited a clinic together in St. Paul [Minnesota] earlier. So I think that speaks to it, too, that it is a very important issue for both of them and that it is definitely going to be something the other side is going to really seize on and a point of distinction.

Rovner: Meanwhile, as Shefali alluded to, the Republicans continue to bob and weave on health care issues. Republican vice presidential nominee JD Vance told the news site Notice earlier this week that the ACA [Affordable Care Act] is indeed on the agenda for a second Trump administration, although he didn’t say exactly how. “I think we’re definitely going to have to fix the health care problem in this country,” was his exact quote. Any hints to what that might entail?

Raman: Honestly, no. I think that everything that we’ve heard so far has really just put multiple things up on the table without giving any specifics. Is the ACA repeal-and-replace still on the table? It depends on do we have a majority, do we have a minority, in Congress? And what would that even entail given that we had the whole thing in 2017 where it didn’t work out for them? And Trump has hinted back and forth and not been very clear, so we’re still not sure without more clarity from them.

Rovner: The rest of what JD Vance said was “Obamacare is still too expensive and a lot of people can’t afford it, and if they can’t afford it, they don’t get high-quality care, and we’re going to give them high-quality care.” And my thought was, that would be great. How on earth do you plan to make Obamacare less expensive and care higher quality? That seems like a rather tall order, but a great goal.

Luthra: And realistically, right? We don’t have, as Sandhya pointed out, a real record for JD Vance to look at. We do have a record for Donald Trump, but we don’t have statements of principle or value that we can really attribute to him. We don’t know what he really would do because we don’t know what he believes in. And that, I think, is why we put so much attention in the press. And why we’ve seen Democrats put so much attention on what Republican think tanks are talking about. And what the people who would staff those administrations would say. That is why something like Project 2025 merits so much scrutiny because those are the people who will be in power in institutions of government and potentially interpreting these kinds of vague sentences into actual policy that touches our lives.

Rovner: We don’t know very much of what Donald Trump really thinks about health care because he wants it that way. He wants to keep all of his options open. But one of the things that we do know is that he’s repeatedly promised not to touch Social Security or Medicare, the so-called third rails of American politics. He has specifically declined, however, to include Medicaid on that list of things that he won’t touch. And now we’re reading various proposals — as you mentioned, from Project 2025 to the Paragon Institute, which is run by a former Trump official — that are proposing various ways to scale back Medicaid, particularly federal Medicaid spending, possibly dramatically. Did they not learn from the 2017 repeal-and-replace fight that Medicaid, now that it covers like 90 million people, is kind of pretty popular?

Raman: I think that even after that, we’ve had so many times that we’ve seen in that administration trying to modify the ways that they can with Medicaid. We had the try to push for block grant proposals multiple times. We’ve had the work requirements try to come to fruition in multiple states before being struck down by the courts. And those things are still pretty popular if you look at the documents put out by a lot of these think tanks as something that could be brought up again. Including pulling back on expansion as a way that they see as really reducing federal spending, especially as they’re trying to reduce the national debt and just bring down costs in general.

Rovner: Pulling back on the federal match for expansion, more to the point.

Raman: Because Medicaid expansion is largely funded by the federal government. And so I think those are things that we could see given the history and the people that are working in those places and their connections to the former administration.

Luthra: And I do think it’s worth noting that Trump has said right now that he would not want to touch Social Security or Medicare. I think we can also put a few grains of salt, maybe some more salt, in there, because that is also what he said when he ran for president in 2016. And again, that isn’t really what he was as committed to as president. It was: What does [House Speaker] Paul Ryan want to do? What will I be willing to negotiate on? And with Trump in particular, there is such a distinction between knowing what is politically pragmatic to say in a campaign versus what is on the table as an administration, that I just think that it is incumbent on all of us to not take that with too much credibility, just in this very specific case.

Rovner: And also Social Security and Medicare sometimes need touching, saying that you’re not going to touch, leaving them on autopilot, is not a very responsible public policy. You actually do have to get under the hood occasionally and do things to these programs. But before we get to that, I want to talk a little bit more about abortion. This week, the Society of Family Planning, which is tracking the number of abortions around the U.S. in the wake of the Dobbs [v. Jackson Women’s Health Organization] ruling, reported that the volume of abortions continues to increase despite complete bans in 14 states and near-bans in several others. Shefali, how is this happening? Why is the number of abortions going up? One would think it would be going down.

Luthra: I think these numbers are really striking. They show a continuation of a trend, which is largely this increase in telehealth. More people getting abortion through, in some cases, shield law provision, living in states like Texas and getting pills mailed to them from doctors in New York. Or the fact that it is simply easier to get an abortion if you live in a state with abortion protections because telehealth is much more available right now. The numbers also do show more in-clinic care because people are traveling and overcoming great distances to get abortion.

One thing that I think is really important and that the authors had noted when this came out was these go through March. And on May 1, Florida’s abortion ban took effect, and that is one of the biggest abortion bans that we have seen since the Dobbs decision. And I think it will be really interesting to see whether the trend that we have been observing for quite some time — this steady increase and, in particular, growth of telehealth and continued travel — if that remains possible and viable when you lose a state with as many clinics and as many people as Florida had had.

Rovner: I saw Stephen Miller, the Trump adviser, on TV last night talking about “There will be no national abortion ban under Donald Trump,” which is a whole other discussion. But these numbers, and continuing to go up, must be making the anti-abortion movement crazy.

Luthra: They are losing their minds. They are deeply frustrated on two levels. They’re very concerned that people are finding ways to travel. That is not something they hoped for. And they are very concerned about telehealth in particular. And what they keep saying is they want to find some kind of legal strategy to challenge the shield law provision, but they haven’t quite figured out how. There is real talk in Texas among some of the anti-abortion activists. They’re trying to see is there a way we could pass legislation in a future session to perhaps ban internet providers from showing the websites that allow you to order medication abortion.

Something like that. All of this would be fought through the courts. All of this would be heavily litigated. But it is their No. 1 priority because it is an existential threat to abortion bans. Obviously, they are waiting to see what happens in the presidential election because if you do have an administration that is willing to restrict the ability to mail mifepristone through rehabilitating the Comstock Act — not passing a national abortion ban, but using older laws on the books — then that does some of the job for them and could very significantly put a dent in or even halt this trend.

Rovner: Well, speaking of the abortion pill, we’re seeing pressure campaigns from both sides now aimed at some of the big corporations, including Costco and Walmart, that could start selling the abortion pill in their brick-and-mortar pharmacies. This is something that the Food and Drug Administration, at least, started to make easier earlier in the Biden administration. Now we have institutional investors from blue states pushing companies to carry the drug to make it more available, or else they will divest their very large stock holdings. While we have institutional investors that represent anti-abortion groups, like the American Family Association, who are threatening to divest if the companies do start selling the abortion pills, I would not like to be on the board of any one of these big corporations right now. This seems like a rather uncomfortable place for them to be.

Luthra: Yeah, and none of this is surprising. Alice Ollstein, regular contributor to this podcast, broke a really great story, gosh, a year and a half ago now, when we saw that even CVS and Walgreens, for a time, didn’t want to distribute mifepristone in states where abortion was legal, but there were threats of litigation from attorneys general. And that has changed. The story points out that we have CVS and Walgreens carrying these pills and distributing them. But a lot of people do get medication from Costco. A lot of people do get medication from Walmart. What we’ll see is that this is just another way in which the fight over abortion, which has real meaning for so many people, just continues to play out in the corporate sector. It is something that has been true since Dobbs happened. It is just another sign of how much people care about this and the money behind it and the chaotic nature of banning a procedure in some states and heavily stigmatizing it even in others.

Rovner: The ripple effect of the Dobbs decision. I really do think the Supreme Court had no great appreciation for just how far into other facets of American life this was going to spread, which it definitely is. Well, even as abortions are going up, states with abortion bans are spending increasing amounts of taxpayer money on anti-abortion crisis pregnancy centers that try to talk pregnant people out of terminating their pregnancies. This is flying under the radar, I feel like. We’ve seen these crisis pregnancy centers have been around for a very long time, but what we haven’t seen is the amount of money that states are now saying, “Well see, we care about pregnant women, even though we’re banning abortion, because we’re giving all this money to these crisis pregnancy centers.”

Luthra: And I was pretty struck by just how much money we have seen states put into these centers since the Dobbs decision. The report that you highlight, Julie, found that it was almost $500 million across all these states has gone in since 2022. That’s almost half a billion dollars going into these centers. And you’re right that they do fly, in some ways, under the radar. And part of that is because it is very hard to know how they spend that money. They have very, very little accountability built in place. They are not regulated the way that health care systems are. That also means if you’re a patient and you go there for seeking health care, you are not protected by HIPAA necessarily. And you often will get “care” that can be inaccurate or misleading because, fundamentally, these institutions exist to try and deter people from getting abortions, from … staying pregnant and having children.

I do think that we will see more and more of this happen, and in some ways Republicans have been very overt about that. This was the focus of the March for Life. We saw a bunch of bills in Congress that Republicans put forth talking very specifically about federal funding for anti-abortion centers. This was the biggest trend we saw in statehouses this year when it came to abortion, was passing bills that would add more funding to anti-abortion centers. It’s one area where they feel like the political consequences are far less than bans because bans are unpopular and people don’t fully understand and know what these are. And so they’re not going to get as upset with you when they hear, “Oh, you put more money into these places that are supposed to help pregnant people.” Even though the reality is we don’t actually have any metrics or data that show that they do, and we do have a lot of journalism that shows that they mislead people.

Rovner: Yeah. I will put the link back to the good investigation that ProPublica did that we talked about a couple of weeks ago about how all the money in Texas is impossible to track, basically. All right, well, the Senate last week followed the House’s lead and recessed until early September, which leaves them just a few legislative days when they get back to either finish up all 12 of the regular spending bills — spoiler, that is not going to happen — or else pass some sort-of continuing resolution to keep the government open after the Oct. 1 start of fiscal 2025. Sandhya, they went into this — we’ve said this before — with so much optimism from the Republicans: “We’re going to get these all done before Oct. 1.” Where are we?

Raman: So, at this point, we’ve gotten some work done, but it’s very unlikely we would have things done before the end of September. So the House was on track initially to vote on the House floor on their Labor HHS [Health and Human Services] spending bill, but it got derailed after there were some issues with another bill, the energy-water bill, and after they’d fallen short on their legislative branch spending bill, they recessed early.

Rovner: We should point out that while “Labor-H” is always hard to pass, those other ones tend not to be … those are ones that usually go through.

Raman: Yeah, Labor H generally is done near the end of the whole slate just because it is notoriously one of the trickier ones to get all the agreement on. And it is the biggest nondefense spending bill. So it takes longer, and so less far along on the progress with that, and we’re in August recess, both chambers are out. We won’t see any progress until September. Before the Senate left, they did advance their spending bill on the committee level. That went a lot differently than the House’s markup. So we had three people opposed, but everyone else was pretty much in agreement. A lot less eventful. It wasn’t focused on amendment debate and it was bipartisan, which is a big thing.

So we will see it when they come back, if they gravitate a little bit more towards this, if they’re shifting a little bit in between the two bills. But I think another thing to keep in mind is they have so little time this year to get so much done. They have so much recess this year for the election that it really puts a crunch on their timeline. And then there are certain people advocating that if this person wins, if that person wins, should we do a shorter-term plan spending bill so that we can get our priorities in if this party’s in control, this party has more control. So it’s a difficult situation.

Rovner: Yeah. Here we are basically heading into the home stretch for the spending bills with a gigantic question mark. As usual. Every year they say, “This won’t happen next year.” Every year this happens next year. Well, meanwhile, this is our midyear reminder that Congress also has to pass a bunch of other bills to do things like preventing some pretty big cuts to Medicare physician pay, to keep community health centers and safety-net hospitals up and running, and they have to do all this by the end of the year. I assume we’re still looking at a postelection, lame-duck session to try to wrap everything together.

Raman: I think that’s what we’re looking at. The big priority is going to be to get the government funded. And I think. as with previous years, will we get some of these other things tacked onto there? Will we get extension of telehealth flexibilities or some of the PBM [pharmacy benefit manager] reform or some of the other things that we’ve been discussing at the committee level and hoping to get across the finish line? But it’s really difficult, I think, to get some of those things done until we have this broader package. And I think it’s important that some of the times when we get the broader package, it can help pay for other of the programs that we’ve been considering at the committee level.

Rovner: That was just what I was going to say. The PBM reform, in particular, saves money. Gee, you can prevent the physician pay cut and fund community health centers.

Raman: Yeah. So I think a lot of it will depend on how quickly they’re able to get to an agreement. And if you look at the differences between the House and the Senate bills, it’s billions of dollars. I think just on health spending, it was like almost a $16 billion difference in the top line number between the bills. So getting to some sort of middle ground is going to take some time to get there.

Rovner: Well, before we leave the Hill for the rest of the summer, the Senate Health, Education, Labor, and Pensions Committee, where Democrats and Republicans have not always seen eye to eye under Chairman Bernie Sanders, actually came together last month to open an investigation into, and issue a subpoena to, the CEO of Steward Health Care. You may remember we talked about Steward back in May. It’s a Dallas-based, physician-owned hospital group that was sold to a private equity firm, which promptly sold the real estate the hospitals were sitting on, forcing them to then pay rent. Then the private equity group basically cashed out. And now the hospitals are floundering financially, which is threatening patient care in several states. This is the first time the committee has issued a subpoena since 1981. I did not know that before this week. And it’s kind of a big deal. This is the first, I think, I feel like, big investigation, at least among this committee, about the consequences of private equity in health care.

Raman: Yeah, I would say that, and especially because this is bipartisan. And I think there have been so many bipartisan issues over the past couple of years that it has been difficult to get the chairman and the ranking member to see eye to eye on or to prioritize in the same order. And so I really do think it is a big deal to be able to issue that subpoena and have the CEO come in in September.

Rovner: Yeah, this will be interesting. [Sen.] Bernie Sanders made a big point of dragging up some of the drug company CEOs who said pretty much what we expected them to say. But this is a little bit of a different situation and there’s a bunch of senators from both parties who have hospitals in their states that are now being threatened by the bankruptcy of Steward Health Care, so we’ll see how that goes. Speaking of profiteering in health care, we have two really excellent stories this week on pretty much the same subject: Stat News as part of its continuing investigation into the way UnitedHealthcare is squeezing extra money out of the Medicare program, particularly the Medicare Advantage program, has a piece on the use of a questionable test that’s used to diagnose peripheral artery disease, which can dramatically increase the Medicare Advantage payment for a patient who has it, just kind of coincidentally.

Along similar lines, The Wall Street Journal has a story looking at how not just United, but other major Medicare Advantage insurers, including Humana and Aetna, are using the same test, often provided during a “free home visit” by a nurse practitioner, and scoring those very same extra Medicare Advantage payments. Now, I’m old enough to remember when the biggest knock on Medicare Advantage was that, because it had fixed payments, it gave insurers an incentive to skimp on care. So we had lots of patients who couldn’t get care that they needed. Now that the payments are risk-adjusted, there’s an incentive for insurers to give too much care, or at least to suggest that patients need more care than they do; like that maybe they have peripheral artery disease when they don’t, really. Are there any suggestions floating around how to fix this? Shefali, you were alluding to this, that Medicare Advantage, in particular, can be a little bit of a sinkhole for federal funds.

Luthra: I think this is something that we have struggled with for a long time, right. And I think I was always thrilled to see a Bob Herman byline and we get another one on this Stat story. And one thing that he has written about so compellingly is that the sheer power that health care providers have. And I think we just can’t really ignore the role that they play then in being able to get all of this federal money into their system for things that we don’t necessarily need. And that’s not an easy thing to address politically because people like their hospitals. And even when you hear from lawmakers who want to talk about better regulation of hospitals, they really only talk about for-profit hospitals. Even though if you were to go to a for-profit or not-for-profit, you might see some similarities in how they approach what they bill for. And this is something that we haven’t figured out a good solution to because of how our politics work. But I’m really grateful that we get more reporting like this that helps remind us just how skewed the incentives are in our system.

Rovner: Yeah, it’s hard to blame them. These are for-profit companies that have shareholders, and their job is to figure out how to make money for their shareholders. And they do it extremely well. But the money that they’re making is coming from U.S. taxpayers, and there are patients who are caught in the middle. It’s been a thorny issue. This has been what we’ve been fighting about with Medicare for Medicare’s entire 59 years of its existence. So that will continue while we try to figure out everything else, like making this year’s budget work. Finally this week, we reported in July how Michael Bloomberg gave his alma mater, Johns Hopkins University, another billion dollars that will, among other things, eliminate medical school tuition for most of its student body. We pointed out at the time that the schools that have gone tuition-free have not actually succeeded either in getting more students to go into primary care.

There’s the concern that if you have a lot of debt, you’re going to want to go into a specialty to pay it off. Nor has it enabled more students of color to become doctors. So now Bloomberg is making his philanthropy a little bit more direct. He’s giving a combined $600 million to the four historically Black colleges and universities that have their own medical schools, including Howard [University] here in D.C., in hopes of more directly addressing equity issues that go along with patients not being able to get culturally sensitive care. HBCUs educate the vast majority of the nation’s Black doctors, so is this finally a step in the right direction with the medical education and health equity?

Raman: I would argue it is. Like you said, if you look at the data, the American Association of Medical Colleges [Association of American Medical Colleges] said half of Black doctors graduate from one of these schools. And that could really increase some of the uptake of preventative care and trust in medicine in the Black community who, I think they’ve done some polling, that are more comfortable a lot of times with other Black doctors. And I think that another point was the money is also starting another medical school to increase that pipeline as well. And that is another big thing where it’s broadening the pipeline, but also just really feeding into these goals, should be big over time.

Rovner: A continuing effort, I think there. All right, well, that is the news for this week. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Sandhya, you got yours picked first this week. Why don’t you tell us about your extra credit?

Raman: So I chose, “‘I Had a Body Part Repossessed’: Post-9/11 Amputee Vets Say VA Care Is Failing Them.” And it’s by Hope Hodge Seck at The War Horse. And it is just a really excellent piece looking at some of the concerns that amputee vets have been having and what the shortcomings are in the care from the VA [U.S. Department of Veterans Affairs], not having bills paid for some of the prosthetics or just delays in receiving them. And one interesting issue that was brought up there is that VA care for post-9/11 amputee veterans doesn’t take into account some of the needs for that population. They’re very different from maybe the needs of senior veterans. And it goes into more about how Capitol Hill is hearing some of these concerns. But read the story and learn more.

Rovner: Shefali?

Luthra: This is from KFF Health News. It is by Stephanie Armour. It is on a topic we discussed earlier on this podcast. The headline is “Inside Project 2025: Former Trump Official Outlines Hard Right Turn Against Abortion.” And what I love about this piece is it does a great job going into detail about the reproductive health ideas and agenda that is outlined in Project 2025. But I also really love that it ties that to the people who are involved in Trump World. Right? And it talks about who are the people who wrote this. Roger Severino, obviously a huge name, very anti-abortion, was involved in Trump’s HHS when he was president last time, and …

Rovner: Did the Office for Civil Rights.

Luthra: Exactly, which has huge implications for abortion policy and reproductive health policy. And I think that Stephanie does a really great job of getting into the political back and forth that has emerged over Project 2025, in which Trump himself has tried to distance himself from the document, from what it outlines and what it says. But that doesn’t really stand up to scrutiny when we look at the authors because it is largely people who have worked for Trump, have advised him, and are likely to have influential roles coming forward. There’s also some ties between JD Vance and the folks at [The] Heritage [Foundation] and Project 2025 that really solidifies the notion that this is something that could be very influential in dictating what our country would look like under a Trump-Vance presidency. And I appreciate Stephanie’s work in clarifying what it says.

Rovner: Yeah, it’s a really good story. Well, my extra credit this week is a study in JAMA Internal Medicine. It’s from the Cambridge [Health] Alliance at Harvard and is called “Health, Access to Care, and Financial Barriers to Care Among People Incarcerated in US Prisons.” And it looks at something that I didn’t even know existed: copays required in prisons for prison inmates in order to obtain medical care. The study found, not surprisingly, that copays can be equal to more than a week’s wage for some inmates, who often make just pennies an hour for the work that they do behind bars. And that many inmates end up going without needed care because they can’t afford said copays.

It’s pretty eye-opening and I hope it gets some attention. OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. As always, you can email us your comments or questions; we’re at whatthehealth@kff.org. Or you can still find me at X, I’m @jrovner. Sandhya?

Raman: @SandhyaWrites.

Rovner: Shefali?

Luthra: @shefalil.

Rovner: We will be back in your feed next week. Until then, be healthy.

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8 months 3 days ago

Elections, Multimedia, States, The Health Law, Abortion, KFF Health News' 'What The Health?', Minnesota, Podcasts, reproductive health, Telemedicine, U.S. Congress, Women's Health

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