KFF Health News' 'What the Health?': The Open Enrollment Mixing Bowl
The Host
Julie Rovner
KFF Health News
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.
Autumn is for pumpkins and raking leaves — and open enrollment for health plans. Medicare’s annual open enrollment began Oct. 1 and runs through Dec. 7. It will be followed shortly by the Affordable Care Act’s annual open enrollment, which starts Nov. 1 and runs until Jan. 15 in most states. But what used to be a fairly simple annual task — renewing an existing health plan or choosing a new one — has become a confusing, time-consuming mess for many, due to our convoluted health care system.
Meanwhile, Ohio will be the next state where voters will decide whether to protect abortion rights. Those on both sides of the debate are gearing up for the November vote, with anti-abortion forces hoping to break a losing streak of state ballot measures related to abortion since the 2022 overturn of Roe v. Wade.
This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, Alice Miranda Ollstein of Politico, and Lauren Weber of The Washington Post.
Panelists
Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Alice Miranda Ollstein
Politico
Lauren Weber
The Washington Post
Among the takeaways from this week’s episode:
- The U.S. House of Representatives has been without an elected speaker since Oct. 4. That means lawmakers cannot conduct any legislative business, with several important health bills pending — including renewal of the popular international HIV/AIDS program, PEPFAR.
- Open enrollment is not just for people looking to change health insurance plans. Plans themselves change, and those who do nothing risk continuing in a plan that no longer meets their needs.
- A new round of lawsuits has sprung up related to “abortion reversals,” a controversial practice in which a patient, having taken the first dose of a two-dose abortion medication regimen, takes a high dose of the hormone progesterone rather than the second medication that completes the abortion. In Colorado, a Catholic-affiliated health clinic says a state law banning the practice violates its religious rights, while in California, the state attorney general is suing two faith-based chains that operate pregnancy “crisis centers,” alleging that by advertising the procedure they are making “fraudulent and misleading” claims.
- The latest survey of employer health insurance by KFF shows annual family premiums are again escalating rapidly — up an average of 7% from 2022 to 2023, with even larger increases expected for 2024. It’s not clear whether the already high cost of providing insurance to workers — an annual family policy now averages just under $24,000 — will dampen companies’ enthusiasm for providing the benefit.
Also this week, Rovner interviews KFF Health News’ Arielle Zionts, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” feature about the wide cost variation of chemotherapy from state to state. If you have an outrageous or inscrutable medical you’d like to send us, you can do that here.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:
Julie Rovner: NPR’s “How Gas Utilities Used Tobacco Tactics to Avoid Gas Stove Regulations,” by Jeff Brady.
Lauren Weber: KFF Health News’ “Doctors Abandon a Diagnosis Used to Justify Police Custody Deaths. It Might Live On, Anyway,” by Markian Hawryluk and Renuka Rayasam.
Joanne Kenen: The Washington Post’s “How Lunchables Ended Up on School Lunch Trays,” by Lenny Bernstein, Lauren Weber, and Dan Keating.
Alice Miranda Ollstein: KFF Health News’ “Pregnant and Addicted: Homeless Women See Hope in Street Medicine,” by Angela Hart.
Also mentioned in this week’s episode:
- The Washington Post’s “The Post Spent the Past Year Examining U.S. Life Expectancy. Here’s What We Found,” by The Washington Post staff.
- The Washington Post’s “Primary Care Saves Lives. Here’s Why It’s Failing Americans,” by Frances Stead Sellers.
- Vox’s “Vox Launches New Guide to Open Enrollment,” by Vox Communications.
- Politico Magazine’s “How Dobbs Triggered a ‘Vasectomy Revolution,’” by Jesús A. Rodríguez.
Click to open the transcript
Transcript: The Open Enrollment Mixing Bowl
KFF Health News’ ‘What the Health?’Episode Title: The Open Enrollment Mixing BowlEpisode Number: 319Published: Oct. 19, 2023
[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, Oct. 19, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. Today, we are joined via video conference by Alice Ollstein of Politico.
Alice Miranda Ollstein: Good morning,
Rovner: Lauren Weber of The Washington Post.
Lauren Weber: Hello, hello.
Rovner: And Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hi, everybody.
Rovner: Later in this episode, we’ll have my interview with Arielle Zionts, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” about how chemotherapy can cost five times more in one state than in another. But first this week’s news. So, it’s Oct. 19, the House of Representatives is still without a speaker. That’s 2½ weeks now. That means legislation can’t move. Are there health care items that are starting to stack up? And what would it mean if the House ends up with an anti-federal government conservative like Rep. Jim Jordan, who, at least as of this moment, is not yet the speaker and does not yet look like he has the votes?
Ollstein: So in terms of unfinished health care business, the three big things we are tracking are things that actually lapsed at the end of September. Congress did manage to keep the government open, but they allowed three big health care things to fall by the wayside, and those are PEPFAR, the global HIV/AIDS program, the SUPPORT Act, the programs for opioids and addiction, and PAHPA, the public health, pandemics, biohazards big bill. And so those …
Rovner: I think one of those P’s stands for “preparedness,” right?
Ollstein: Exactly, yes. But it’s related to pandemics, and you would think after all we just went through that that would be more of a priority, but here we are. The reauthorization of all three of those is just dangling out there and it’s unclear if and when Congress can act on them. There is some level of bipartisan support for all of them, but that is what is stacking up, and nothing is really happening on those fronts, according to my conversations with sources on the Hill because everything has just ground to a halt because of the speaker mess.
Rovner: And, of course, we’re less than a month away from the current continuing resolution running out again, and we may go through — who knows? They may get a new speaker and then he may lose his job or her job once they try to keep the government open in November. It’s a mess. I’ve never seen anything like this …
Kenen: Also, in addition to those three very political … even public health and pandemics are now politics … that Alice correctly pointed out, these three huge ideological, how are we going to get them reauthorized in the next 30 days? But there’s also more routine things that are not controversial but are caught up in this such as community health center funding, which has bipartisan support, but they need their apropos and all that stuff. So in addition to these sort of red-blue fights, there’s just, how do we keep the doors open for people who need access to health care? That’s not the only program. There are many day-to-day programs that like everything else in the government are up in the air.
Rovner: I mean, we should point out this is unprecedented. The only other time the House has been without a speaker this long was one year when they didn’t come in at the beginning of the Congress until later in January. It’s literally the only time. There’s never been a mid-session speakerless House. So everything that happens from here is unprecedented. Well, meanwhile, if you have turned on a TV in the past week, you already know this, but Medicare open enrollment began last Sunday, Oct. 15. To be clear, when you first become eligible for Medicare, you can sign up anytime in the three months before or after your birthday. But if you enroll in a private Medicare Advantage plan or a private prescription drug plan, and most people are in one or the other or both, open enrollment is when you can add or change coverage. This used to be pretty straightforward, but it’s only gotten more confusing as private plans have proliferated. This year the Biden administration is trying to fight back against some of the misleading marketing efforts. Politico reports that the government has rejected some 300 different ads. Is that enough to quell the confusion? I’m already seeing ads and kind of look at it, like, “I don’t think that says what it means to say.”
Weber: Yeah, we see this every year. It’s a ton of ads. It’s a barrage of ads that all say, “Hey, this plan is going to get you X, Y, Z, and that’s better than traditional Medicare.” But you got to read the fine print, and I think that is the big thing for all the folks that are looking at this every time. Open enrollment is very confusing, and a lot of times people are trying to sell you things that are not what they appear. So it does appear that there has been more movement to crack down on those ads. But look, the family members I talked to are still confused, so I don’t know how much that’s proliferating down quite yet.
Kenen: And even if the ads were honest, our health system is so confusing. Even if you’re at an employer health system. All of us are employed, all of us get insurance at work, and none of us really know we have made the best choice. I mean, you need a crystal ball to know what illness you and your relatives are going to get that year, and what the copays and deductibles for that specific condition. I’ve never been sure. I have three choices. They’re all decent, whether it’s the best for me and my family, with all that I know about health care, I still don’t know I made the best choice ’cause I don’t have a crystal ball or not one that works.
Rovner: Right. I also have choices, and I did my mom’s Medicare for years, as Joanne remembers …
Kenen: You did a great piece on that one.
Rovner: … this is the way I remember it. I did do a piece on that. Long time ago, when they were first starting the prescription drug benefit and you had to sort of sign up via a computer, and in 2006, not that many seniors knew how to use computers. At least we’re sort of over that, but there’s still complaints about the official website Medicare.gov, which does a pretty good job. It’s just got an awful lot of steps. It’s one of those things, it’s like, “OK, set aside two hours,” and that’s if you know what you’re doing to do this. So meanwhile, if this isn’t all confusing enough, open enrollment for the Affordable Care Act opens in two weeks, and while Medicare open enrollment ends Dec. 7, ACA enrollment goes through Jan. 15 in most, but not every, state. In both cases, if you get your insurance through Medicare or through the ACA, you should look to see what changes your plan might be making. I should say also, if it’s open enrollment for your employer insurance, plans make changes pretty much every year. So you may end up, even if you’re in the same plan, with a plan that you don’t like or a plan that you don’t like as much as you like it now. This is insanely complicated, as you point out, for everybody with insurance. Is there any way to make it easier?
Kenen: There’s no politically palatable way to make it easier. And then things they’ve done to try to make it easier, like consistent claims forms, which most of us don’t have to fill out anymore. Most of that’s done online, but they’re not using consistent claim forms and there’s nothing simple and there’s nothing that’s getting simpler. And we’re all savvy …
Rovner: It’s what keeps our “Bill of the Month” project in business.
Kenen: Right. We’re all pretty savvy and none of us are smart enough to solve every health care problem of us and our family.
Rovner: It’s one of those things where compromise actually makes for complexity. When policymakers can’t do something they really want to do, they do something smaller and more incremental. And so what you end up with is this built on, in every which way, kind of health care system that nobody knows how it works.
Kenen: Like the year I hurt both a finger and a toe. And I had a deductible for the finger, but not for the toe. Explain that!
Rovner: I assume it was in and out of network or not even.
Kenen: No. They were both in network. All of my digits are in network.
Weber: I just got a covid test bill from 2020 that I had previously knocked down by calling, but they rebilled me again. And because I am a savvy health care reporter, I was like, “I’m not paying this. I know that I don’t have to pay this.” But it took probably 10 hours to resolve, I mean, and that’s not even picking insurance. So I’m just saying it’s an incredibly complex marketplace. Shout-out to Vox who had a really nice series that tried to make it easier for people to understand the differences between Medicare and Medicare Advantage, open enrollment, what that all means. If you haven’t seen that and you’re confused about your insurance options, I would highly recommend it.
Rovner: And I will link to the Vox series, which is really good, but it was kind of looking at it. I mean, they had to write six different stories. It’s like that’s how confusing things are, which is really kind of sad here, but we will move on because we’re not going to solve this one today. So speaking of things that are complicated and getting more so, let’s turn to reproductive health. Alice, the big event that people on both sides are waiting for — one of those events, at least — is a ballot measure in Ohio that would establish a state constitutional right to abortion. So far, every state ballot measure we’ve seen has gone in favor of the abortions rights side. How are abortion opponents trying to flip the script here?
Ollstein: So I was in Ohio a couple of weeks ago and was really focused on that very question, just what are they doing differently? How are they learning lessons from all of the losses last year? And why do they think Ohio will be any different? I will say, since my piece came out, there was the first poll I’ve seen of how people are approaching the November referendum, and it showed overwhelming support for the abortion rights side, just like in every other state. So have that color, what I’m about to say next, which is that the anti-abortion side thinks they can win because they have a lot of structural factors working in their favor. They have the governor of Ohio really actively campaigning against the amendment. So that’s in contrast to [Gov. Gretchen] Whitmer in Michigan last year, campaigning actively for it. When you have a fairly popular governor, that does have an impact, they’re a known trusted voice to many. Also …
Rovner: And the governor of Ohio is also a former senator and I mean a really well-known guy.
Ollstein: Yeah. Yeah, exactly. You just have the entire state structure working to defeat this amendment. They tried in a special election in August to change the rules. That didn’t work. Now, you just have all of these top officials using their bully pulpit and their platforms to try to steer the vote in the anti-abortion direction. Also, the actual campaign itself is trying to learn lessons from last year and doing a few things differently. They’re going really aggressively after the African American vote, particularly through Black churches. And so that’s not something I saw in the states I reported on last year, and they’re really aggressively going after the student vote. And I went to a student campus event at Ohio State that the anti-abortion side was holding, and it seemed pretty effective. There was a ton of confusion among the students. A lot of the students are like, “Wait, didn’t we just vote on this?” referring to the August special. They said, “Wait a minute, which side means yes, and which side means no?” There was just rampant confusion, and it wasn’t helped … I observed the anti-abortion side, telling people some misleading things about what the amendment would and wouldn’t do. And so all of that could definitely have an impact. But like I said, since my story came out, a poll came out showing really strong support for the abortion rights amendment, which would block the state’s six-week ban, which is now held up in court, but the court leans pretty far to the right. This would block that from going back into effect potentially.
Rovner: Ohio, the ultimate swing state, probably the reddest swing state in the country. But Ohio is not the only state having an off-year election next month. Virginia doesn’t have an abortion measure on the ballot, but its entire state House and Senate are up for reelection. And from almost every ad I’ve seen from Democrats, it mentions abortion, and there’s a lot of ads here in the Washington, D.C., area for some of the Virginia elections. Republican Gov. Glenn Youngkin, who’s not on the ballot this year, thinks he has a way of talking about abortion that might give his side the edge. What are we going to be able to tell from the ultimate makeup of the very narrowly divided Virginia Legislature when this is all said and done?
Kenen: It won’t be veto-proof. Unlike North Carolina now, even if it’s the Democrats hold the one chamber they have or win both of them, and it’s really close. These are very closely divided, so we really don’t know how it’s going to turn out. But I mean he …
Rovner: One year it was so close that they literally had to draw rocks out of a bowl.
Kenen: Yeah, right. There’s highly unlikely that there will be a scenario where there’s a really strongly Democratic legislature with a Republican governor. That’s not likely. What’s likely is a very narrowly divided, and we don’t know who has the edge in which chamber. So the governor can’t just do things unilaterally, but how it plays out. And Youngkin’s backing a 15-week ban with some exceptions after that for life and health. A year ago, that would’ve seemed like an extreme measure. And now it seems moderate, I mean compared to zero weeks and no exceptions. So Virginia’s a red state, it’s swung blue. It’s now reddish again, I mean, it’s not a swing state so much in presidential, but on the ground, it’s a swing state. And …
Rovner: But I guess that’s what I was getting at was Youngkin’s trying to sort of paint his support as something moderate …
Kenen: That’s how he’s been trying to thread this needle ’cause he comes across as moderate and then he comes across as more conservative. And on abortion, what’s moderate now? I mean, in the current landscape among Republican governors, you could say his is moderate, but Alice follows the politics more closely, but half the country doesn’t think that’s moderate.
Rovner: If the Democrats retain or win both houses of the legislature, I mean, will that send us a message about abortion or is that just going to send us a message about Virginia being a very narrowly divided state?
Ollstein: I think both. I think Joanne is right in that the polling and the voting record over the last year reflect that a lot of people are not buying the idea that 15 weeks is moderate. And a lot of polls show that when presented the choice between a total ban and total protections, even people who are uncomfortable with the idea of abortions later in pregnancy opt for total protections. And so you’ve seen that play out. At the same time, there’s a lot of people on the right who correctly argue that the vast majority of abortions happen before 15 weeks, and so 15 weeks is not going far enough. And they’re not in favor of that as so-called compromise or moderate policy. And so …
Rovner: There are no compromises in abortion.
Ollstein: Truly, truly.
Rovner: If we’ve learned anything, we’ve learned that.
Ollstein: And when you try to please everyone, sometimes you please no one, as we’ve seen with both candidates and policies that try to thread this needle. And so I think it will be a really interesting test because yes, right now the legislature is sort of the firewall between what the governor wants to do on abortion, and whether that will continue to be true is a really interesting question.
Rovner: Meanwhile, we have dueling abortion reversal lawsuits going on in both Colorado and California. Abortion reversal, for those who don’t follow all the jargon, is the concept of interrupting the two-medication regime for abortion by pill. And instead of taking the second medication, the pregnant person takes large doses of the hormone progesterone. The American College of Obstetricians and Gynecologists says there is no evidence that this works to reverse a medication abortion and that it’s unethical for doctors to prescribe it. But in Colorado, a Christian health clinic is charging that a state law that bans the practice offering abortion reversal violates their freedom of religion. In California, it’s actually the opposite. The state attorney general is suing a pregnancy crisis center for false advertising, promoting the practice. Alice, how big a deal could this fight over abortion reversal become? And that’s assuming that the pill remains widely available, which is going to be decided by yet another lawsuit.
Ollstein: Yeah, absolutely. Although it’ll be a long time before we know whether mifepristone is legally available on a federal basis. But I’ve been watching this bubble up for years, but it’s up till now been more of a rhetorical fight in terms of: “Abortion reversal is a thing.” “No, it’s not.” “Yes, it is.” “No, it’s not.” “Here’s my expert saying it is.” “Here’s my expert saying it’s not.” But this is really moving it into a more sort of concrete, legal realm, and not just rhetoric. And so it is an escalation, and it will be interesting to see. Mainstream health care organizations do not support this practice. There was a clinical trial of it going on that was actually called off because of the potential dangers involved and risks to participants …
Rovner: Of doing the abortion reversal method …
Ollstein: Exactly. Yes.
Rovner: … of trying to interrupt a medication abortion.
Ollstein: Yes. This is really on the cutting edge of where medicine and politics are clashing right now.
Rovner: Yeah, we’ll see how it, and, of course, if they end up in different places, this could be something else that ends up in front of the Supreme Court. And this is, I think, less of an argument about religious freedom than an argument about the ability of medical organizations to determine what is or isn’t standard of practice based on evidence. I mean, I guess in some ways it becomes the same thing as the broader mifepristone case, where it’s like, do you trust the FDA to determine what’s safe? And now, it’s like, do you trust ACOG and the AMA [American Medical Association] and other organizations of doctors to decide what should be allowed?
Kenen: I mean, progesterone has medical purposes, it’s used to prevent miscarriages, but it’s off-label. It goes into these other questions, which all of us have written about — ivermectin, and who gets legal substances, and how do you use them properly, and what’s the danger? And there’s a bunch of them.
Weber: I think the fight over standard of care has really become the next frontier in medical lawsuits. I mean, we’ve all written about this, but ivermectin, obviously, misinformation, prescribing hydroxychloroquine, all of these things are now getting into the legal field. Is that the standard of care? What is the standard of care and how does that play out? So I agree with you. I think this is going to end up by the Supreme Court and I think it has much broader implications than just for mifepristone and abortion drugs too.
Rovner: Yeah, I do too. Well, finally, in an update I did not have on my post-Roe Bingo card, it appears that vasectomies are up in some states, including Oregon, where abortion is still legal, and Oklahoma, where it’s not very widely available. Are men finally taking more responsibility for not getting the women they have sex with pregnant? That would be a big sea change.
Ollstein: Yeah, we’ve been hearing anecdotally that this has been the case definitely since Dobbs and even before that as abortion restrictions were mounting. Politico Magazine did a nice piece on this last year profiling vasectomy [in] a mobile van. And it’s also just fascinating and a lot of people have been highlighting just how few restrictions on vasectomies there are compared to more permanent sterilization for women: no waiting periods, no fighting about it. And so it does provide an interesting contrast there.
Rovner: I know there have been stories over the years about how the demand for vasectomies goes up right before the NCAA tournament in March and April because men figure that they can just recuperate while watching basketball.
Ollstein: I thought that was a myth then I looked it up and it’s absolutely true.
Rovner: It is absolutely true.
Kenen: I mean, it also seems to be more common among older men who’ve had a family and because it’s permanent, I mean usually permanent. It’s usually permanent and right, it’s one thing to decide after a certain point in your life when you’ve already had your kids. I mean, it’s not going to be an option for younger men who haven’t had children.
Rovner: It’s also reliable, it is one of those things that you don’t have to worry about.
Kenen: Even though I looked up the figures once, it’s a very, very low failure rate, but it’s not zero.
Rovner: True. We are moving on to what I call this week in declining life expectancy. I’m glad that Lauren is back with us because The Washington Post has published the next pieces of its deep dive into the U.S. population’s declining life expectancy. And we’re going to start with a story that was co-written by Lauren, but that is Joanne’s extra credit this week. So Joanne, you start, and then Lauren, you can chime in.
Kenen: OK. It’s “How Lunchables Ended Up on School Lunch Trays.” For those of you who have never been in a supermarket or who have closed your eyes in certain aisles, Lunchables are heavily processed, encased in plastic, small lunchboxes of a — it’s not even much of a meal or small — which you can buy in the supermarket. And now two of them have been modified so that they’re allowed in schools as healthy enough …
Rovner: They’re quote, unquote, “balanced” because it’s a little piece of meat and a little piece of cheese.
Kenen: They have so far just a turkey cheese option that qualifies for schools and a pizza that qualifies for schools. Not a whole pizza, a little … but the kid in the story, the second grader in the story, didn’t even know it was turkey. It has 14 ingredients. He thought it was ham. So I mean, that just sort of says it, but it’s beyond the lack of nutrition, it started out sort of like what is this child putting in his mouth and why is it called school lunch? But the story was deeper because it was a very long investigation by Lauren and Dan Keating on the relationship between the food industry, the trade group, and the government regulation. And just say, it leaves a lot to be desired. And you should all read the story only because you can click on the story of the oversized Cheez-It.
I mean, it’s a fake one, but the replica of this as big as the planet Mars. I mean, it’s just this huge Cheez-It. And it’s a really good story because it’s overprocessed food is really bad for us. And I mean, scientists have matched the rise of this overprocessed stuff that began as food and the rise of obesity in America. And it’s not just taking the salt out of it, which they’re doing, the sodium out of or adding a little calcium or something to these processed foods. They’re ultra-processed foods, and that’s not what our body needs.
Rovner: So, Lauren, I mean, how does this relate to the rest of this declining life expectancy project and what else is there to come?
Weber: This is our big tranche of stories. I mean, we should have some follows, but that’s it. And well, Joanne, thank you for the kind words on it. We really appreciate that. But I mean, I think the point that she made that I want to highlight for this in general is what was wild in investigating this story is pizza sauce is a vegetable in the U.S. when it comes to school lunch and french fries are also a vegetable. And that’s really all you need to sum up how the industry influence in Congress has resulted in what kids are having for their school lunch today. One of the things we got to do for the story is go to the national School Nutrition Association conference, which is where we saw the giant Cheez-It. And it’s this massive trade fair of all these companies where they throw parties for the school nutrition personnel to try all the different food. And it’s wild to see in real life. And what Joanne made a good point of about ultra-processed food and what the rules do right now is they don’t consider the integrity of the food. They set limits on calories and sodium, but they don’t consider what kids are actually eating. And so you end up with these ultra-processed foods that growing body of research suggests really have some negative health consequences for you. And so, as Joanne talked about, and as our series gets into, obesity is a real problem in this country, and obesity has huge, long-lasting, life-shortening impacts. One of the folks we talked to for the piece, Michael Moss, said, he worries that processed food is the new tobacco because he feels like smoking’s going down, but obesity’s going up. And something he said to me that didn’t make the piece, but I thought was really interesting is that at some point he thinks there’ll be some sort of class-action lawsuit against ultra-processed food, much like a cigarette lawsuit-
Rovner: Like with tobacco.
Weber: Like a tobacco lawsuit, like an opioid lawsuit. I think that’s kind of interesting to think about, but this was just one of the many life expectancy stories. I want to shout out my colleague Frances Stead Sellers’ story, which talked about how it compared is brilliant. It compared two sisters with rheumatoid arthritis, one who lives in the U.S. and one who lives in Portugal. They’re both from Portugal. The one in Portugal has all this fabulous primary health care. The doctors even call her on Christmas and they’re like, “We’re worried you’re going to have chocolate cherries with brandy that would interact with your medicine.” Whereas the one in the U.S. has to go to the ER all the time because she doesn’t have steady health care and she can’t seem to make it work, ends meet. She doesn’t have a primary health care system. She’s a disjointed doctor system. And the end of the story is the sister in the U.S. who has this severe health problem is moving to Portugal because it’s just so much better there for primary care. And I think that gets at a lot of what our stories on life expectancy have talked about, which is that primary care, preventative care in the U.S. is not a priority and it results in a lot of downstream consequences that are shortening America’s life expectancy.
Rovner: Well, I hope when this project is all published that you put all the stories together and send them to every school of public health in the United States. That would be fairly useful. I bet public health professors would appreciate it.
Weber: Thank you.
Rovner: So it is mid-October, that means it is time for the annual KFF survey of employer health insurance. And for the first time since the pandemic, most premiums are up markedly, an average of 7% from 2022 to 2023 with indications of even larger increases coming for 2024. Now, to people like me and Joanne, who’ve been doing this for a long time, lived through years of double-digit increases in the early 2000s, 7% doesn’t seem that big, but today, the average family health insurance premium is about the same as the cost of a small car. So is there a breaking point for the employer health system? I mean, one of the things — to go back to what we were talking about at the beginning — one of the compromised ways we’ve kept the system functional is by allowing these pieces to remain in pieces. Employers have wanted to offer health insurance. It’s an important fringe benefit to help attract workers. But you’re paying $25,000 a year for a family plan, unless you’re a really big company. And even if you are a really big company, that’s an awful lot of money.
Kenen: One of the things that struck me is, we’re at a point when we’ve had a lot of strikes and reactivated labor movement, but 20 years ago, the fights were about the cost of health care. The famous Verizon strike. They were big strikes that were about health care, the cost. And right now, I’m not really hearing that too much. I’m sure it’s part of the conversation, but it’s not the top. It’s not the headline of what these strikes are about. They’re about salaries mostly and working conditions with nurses and ratios and things like that. I’m not hearing health care costs, but I sort of think we will because, yes, we are being subsidized by our employers, most of us. But you said, “What’s the breaking point?” Well, apparently there isn’t one. We’ve asked ourselves that every single year. And when do we stop doing it? No one has a good answer for that. And related is to what Lauren was just talking about, life expectancy. The lack of primary care in this country, in addition to improving our health, it would probably bring down cost. We used to spend 6 cents on the dollar on primary care, 6 cents. Other countries spend a lot more. Now, we’re down to 4.5 cents. So the stuff that keeps you well and spots problems and has somebody who recognizes when something’s going wrong in you because you’re their patient as opposed to … there’s nothing. I don’t mean that urgent care doesn’t have a place. It does, but it’s not the same thing as somebody who gives you continuity of care. So these are all related. I’ll stop. It’s a mess. Someone else can say it’s a mess now.
Rovner: It’s definitely a mess and we are not going to fix it today, but we’ll keep trying.
Kenen: Maybe next week.
Rovner: All right. Yeah, maybe next week. That is this week’s news. Now, we will play my “Bill of the Month” interview with Arielle Zionts. And then we will come back and do our extra credits.
I am pleased to welcome to the podcast my KFF Health News colleague Arielle Zionts who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Arielle, welcome to the podcast.
Arielle Zionts: Thanks for having me.
Rovner: So this month’s patient is grappling with a grave cancer diagnosis, a toddler, and some inexplicable bills from hospitals in two different states. Tell us a little bit about her.
Zionts: Sure. So Emily Gebel is from Alaska and has a husband and two young kids. She home-schools them. She really likes the outdoors, reading, foraging, and she was diagnosed with breast cancer. Just something that makes me so sad is she found out when she was basically breastfeeding because she felt a lump. And then when she was diagnosed, her baby was asleep in her arms when she got that call. So it just really shows what it’s like to be a mom and to have cancer. She was living in Juneau at the time. Her friends who’ve had cancer suggested [they] wanted to go to a bigger city. Whether it’s true or not, the idea was, OK, bigger cities are going to have bigger care. Juneau is not a big city, and you cannot drive there. You have to take a ferry or you have to fly in, and this is the capital of Alaska. So that might …
Rovner: Yes, I’ve been there. It’s very picturesque and very small and very hard to get to.
Zionts: Yeah, so that might be surprising for some people. The closest major American city is Seattle. So she went there for her surgery and then she decided to have chemo, and she opted for this special type of chemo that uses lower dose, but more frequent doses. The idea is that it creates less of the side effects, and she went to this standalone clinic in Seattle, flying there every week. It’s not a quick flight. It can take up to two hours and 45 minutes. And that just got really tiring. I mean, physically …
Rovner: And she’s got kids at home.
Zionts: Yes, physically and mentally and just taking up time. So she decided to switch to the local hospital in Juneau. So they had bills from the first clinic in Seattle, and then they got some estimates from the one in Juneau and then finally got a bill from there as well.
Rovner: Yes, as we say, “Then the bill came.” And, boy, there was a big difference between the same chemotherapy in Seattle and in Juneau, Alaska, right?
Zionts: I compared two of Emily’s treatments that used a similar mix of drugs and also had overlapping non-drug charges, such as how much it costs for the first hour of treatment, subsequent hours. And in the Seattle clinic, one round cost about $1,600. And then in Juneau it cost more than $5,000, so more than three times higher. And we were able to look at specific charges. So that first hour of chemo was $1,000 in Juneau, which is more than twice the rate in the Seattle clinic. There was a drug that cost more than three times the price at the clinic. And then even the cheaper charges were more expensive. So the hospital charged $19.15 for Benadryl, which is about 22 times the price at the clinic, which was 87 cents.
Rovner: Now to be clear, the Gebel family seems to have pretty comprehensive insurance. So this case wasn’t as much about their out-of-pocket costs as some of the other Bills of the Month that we’ve covered, but they did want to know why there was such a big difference, and what did they, and we find out?
Zionts: Yeah. So we started the story for NPR, we basically started saying, “Hey, this is a little different than the other ones because the family has met their maximum out-of-pocket.”
Rovner: For the year?
Zionts: Yes. Once you pay a certain amount of money for the year, your insurance will cover everything, and that can be a high number. But if you have cancer, cancer’s expensive, so you will probably hit it at some point. By the time she switched her treatment to Juneau, she had met that, so she wouldn’t actually owe anything.
Rovner: But what did they find out nevertheless, about why it costs that much more in Juneau than it did in Seattle?
Zionts: Yes. So Jered, her husband, he is somewhat of a self-taught medical billing expert. He gained this knowledge by listening to “Bill of the Month” and then reading some books about this. I mean, at first, he thought maybe they would owe money, but then he learned they wouldn’t. But he still didn’t think it was fair. I mean, he didn’t think it was fair for the insurance companies. And he did catch two errors. One of them, an estimate, was wrong. The hospital said, “Oh, it looks like there was a computer error,” and that was lowered. And then when it came for the actual bill, there was a coding error. It made one of the drugs not covered when it should have been. So that would’ve actually left them out-of-pocket costs. So he was able to lower an estimate, lower the bill. But again, even with those changes, it was still so much more expensive. And that’s when I called some experts and someone’s gut reaction or initial hypothesis might be, “Well, of course, it’s more expensive in Alaska. Alaska is small, it’s remote. I mean, it’s just going to cost more to ship things there. You need to pay doctors more to entice them to live there.”
Rovner: And it costs more for doctors to live there anyway, right?
Zionts: Yes.
Rovner: The cost of living is high in Alaska.
Zionts: Yes. The expert I spoke with, an economist who has studied this issue. He said, “Yes, that is part of it.” Like you said, everything is more expensive in Alaska, but even when accounting for that, the prices are even higher. So the growth of cost in the health care sector in Alaska is higher than the growth of overall cost. And he listed some policies or trends that might explain that. There’s one that really stood out, which is something called the “80th percentile rule,” but it was meant to contain cost for when you’re seen by out-of-network providers. And it seems that it may have actually backfired, and the state is considering repealing that. But as Elisabeth Rosenthal, one of our editors at KFF Health News, and she’s written an entire book about this, as she said, “This is how our health system works. There’s no law saying, this is how much you can upcharge for some intrinsic value of a medicine or of a service. So hospitals can do what they want.” So …
Rovner: And we should point out, I mean, this is not a for-profit hospital, right? It’s owned by the city.
Zionts: Yes. This is a nonprofit hospital owned by the city, and they don’t get a ton of money from the city or state, which is interesting though. So they’re really getting their funding from the services they provide. And the hospital said they try to make it fair by comparing it to wholesale costs, what other hospitals in the region are charging. But they also said, “Yes, we do need to account for the higher costs.”
Rovner: So what’s the takeaway here? I mean, basically what it costs is going to depend on where you live?
Zionts: Basically, what we’ve learned from all these Bill of the Months is that it’s going to vary depending on what facility you go to. And that could be within one city, the prices could vary. And then you might see some more variation between states and especially in states where the cost of living is higher or it’s more remote.
Rovner: Of which Alaska is both.
Zionts: Yes. And actually, something to add is that the amount of money that this hospital has to spend to fly in doctors and nurses and also just staff, even nonmedical staff, they spent nearly $11 million last year to transport them and pay them because they don’t have enough local people. And the other takeaway, though, is that yes, this can be explained, but also, it’s unexplainable in the sense that our health care system doesn’t have some magic formula or some hard rules about what is, quote, “fair.”
Rovner: Yes, at least when it comes to Medicare, Congress has been trying to do that for, oh, I don’t know, about 50 years now. Still working on it. Arielle Zionts, thank you very much for joining us.
Zionts: Thank you for having me.
Rovner: OK. We are back, and 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. Joanne, you’ve already done yours. Alice, why don’t you go next?
Ollstein: I did a piece by my former colleague Angela Hart for KFF Health News, and it’s about street medicine. So teams of doctors working with unhoused people, and this is profiling mainly in Northern California, but it’s sort of discussing this across the country. And in addition to the really very moving personal stories that she found in her reporting, she also talked about some of the structural stuff that is supporting the expansion of this kind of health care. And so California was already putting a lot of money into health care services for the homeless, but in hospitals and in clinics, they were finding that people just aren’t able to come in. Whether it’s because they don’t want to leave all of their earthly possessions unguarded or because they can’t get the transportation or whatever. And so that money’s now being redirected into having the doctors go to them, which seems to be successful in some ways, but the depth of health care problems is just so deep. And …
Rovner: But also, really the importance of primary care.
Ollstein: Absolutely. And so what they’re finding is just a lot of pregnancies and problems with pregnancy in the homeless population. And so they’re doing more services around that and more offering contraception and prenatal care for the people who are already pregnant. It’s very sad, but somewhat hopeful. And the other more structural thing is changing rules so that doctors can get reimbursed at a decent rate for providing street medicine as opposed to in brick-and-mortar facilities.
Rovner: Thanks. Lauren?
Weber: So I also have a KFF special from my former colleagues, Markian [Hawryluk] and Renu [Rayasam]. It’s just a great piece. It’s called “Doctors Abandon a Diagnosis Used to Justify Police Custody Deaths. It Might Live On, Anyway.” So what the piece does is it interviews the doctor who helped debunk what excited delirium is for his medical organization, but it reveals that that may not help in terms of court cases that have already been decided and in terms of science in general. And I think it’s so fascinating because what this piece does is it gets at what happens when flawed science then is used for lawsuits and consequential things for many, many years to come. I think we’ve seen a lot of stories this year about flawed science and what the actual ramifications are after, and this is clearly horrible ramifications here. And it’s just kind of a fascinating question of how does that ever get made right and how do things slowly or ever go back to what they should be after flawed science is revealed? So really, really great work from the team.
Rovner: Yeah, it’s really good piece. Well, keeping with the theme of choosing stories by our former colleagues. Mine is from a former colleague at NPR, Jeff Brady, and it’s “How Gas Utilities Used Tobacco Tactics to Avoid Gas Stove Regulations.” And if you don’t know what that refers to, I have a book or several for you about the huge sums of money that the tobacco industry paid over many decades to have captive, scientific, quote-unquote, “experts” counterclaims that smoking is bad for your health. It turns out that the gas stove industry likewise knew that gas stoves were worse for your health than electric ones, and that those vent hoods don’t really take care of all the problems of the things that gas stoves emit. And that it also paid for studies intended to muddy the waters and confuse both customers and regulators. It’s a pretty damning story, and I say that as someone who is very much attached to my gas stove but am now having second thoughts.
OK, that is 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 us a review; that helps other people find us too. Special thanks as always to our amazing and patient engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me holding down the fort at X, I’m @jrovner or @julierovner at Bluesky and Threads. Joanne, where are you these days?
Kenen: I’m more on Threads, @joannekenen1. I still have a Twitter account, @JoanneKenen, where I’m not very active.
Rovner: Alice?
Ollstein: I am @AliceOllstein on X and @alicemiranda on Bluesky.
Rovner: Lauren?
Weber: I’m @LaurenWeberHP on X, the HP stands for health policy, as I like to tell people.
Rovner: We will be back in your feed next week. Until then, be healthy.
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Feds Try to Head Off Growing Problem of Overdoses Among Expectant Mothers
LAS VEGAS — When Andria Peterson began working as a clinical pharmacist in the pediatric and neonatal intensive care units at St. Rose Dominican Hospital in Henderson, Nevada, in 2009, she witnessed the devastating effects the opioid crisis had on the hospital’s youngest patients.
She recalled vividly one baby who stayed in the NICU for 90 days with neonatal abstinence syndrome, a form of withdrawal, because his mother had used substances while pregnant.
The mother came in every day, Peterson said. She took three buses to get to the hospital to see her baby. Peterson watched her sing to him some days and read to him on others.
“I saw in the NICU the love that she had for that baby,” Peterson said. “When it came down to it, she lost custody.”
At the time, Peterson said, she felt more could be done to help people like that mother. That’s why, in 2018, she founded Empowered, a program that provides services for pregnant and postpartum women who have a history of opioid or stimulant use or are currently using drugs.
The program helps about 100 women at any given time, Peterson said. Pregnancy often motivates people to seek treatment for substance use, she said. Yet significant barriers stand in the way of those who want care, even as national rates of fatal drug overdoses during and shortly after pregnancy continue to rise. In addition to the risk of overdose, substance use during pregnancy can result in premature birth, low birth weight, and sudden infant death syndrome.
A federal initiative seeking to combat those overdoses is distributing millions of dollars to states to help fund and expand programs like Empowered. Six states will receive grant funding from the Substance Abuse and Mental Health Services Administration to increase access to treatment during and after pregnancy. The Nevada Health and Human Services Department is distributing the state’s portion of that funding, about $900,000 annually for up to three years, to help the Empowered program expand into northern Nevada, including by establishing an office in Reno and sending mobile staff into nearby rural communities.
Other states are trying to spread the federal funds to maximize reach. State officials in Montana have awarded their state’s latest $900,000 grant to a handful of organizations since first receiving a pool of funding in 2020. Connecticut, Iowa, Maryland, and South Carolina will also receive $900,000 each.
Officials hope the financial boosts will help tamp down the rise in overdoses.
Deaths from drug overdoses hit record highs in 2021, according to the Centers for Disease Control and Prevention. More recent preliminary data shows that the rates of fatal drug overdoses have continued to rise since.
Deaths in pregnant and postpartum people have also increased. Homicides, suicides, and drug overdoses are the leading causes of pregnancy-related death.
Fatal overdoses among pregnant and postpartum people increased by approximately 81% from 2017 to 2020, according to a 2022 study. Of 7,642 reported deaths related to pregnancy during those years, 1,249 were overdoses. Rates of pregnancy-related opioid overdose deaths had already more than doubled from 2007 to 2016.
Meanwhile, mothers and mothers-to-be in rural parts of the country, some of the hardest hit by the opioid crisis, face greater barriers to care because of fewer treatment facilities specializing in pregnant and postpartum people in their communities and fewer providers who can prescribe buprenorphine, a medication used to treat opioid addiction.
Data distinguishing the rates of overdose mortality among pregnant and postpartum people in urban and rural areas is hard to come by, but studies have found higher rates of neonatal opioid withdrawal syndrome in rural parts of the country. Women in rural areas also died at higher rates from drug overdoses in 2020 compared with women in urban areas, while the overall rate and the rate among men were greater in urban areas.
In Nevada, a 2022 maternal mortality and severe maternal morbidity report found that most of the state’s pregnancy-related deaths, 78%, happened in Clark County, home to Las Vegas and two-thirds of the state’s population. However, the state’s rural counties had the highest pregnancy-related death rate — 179.5 per 100,000 live births — while Clark County’s was 123 per 100,000 live births.
During a recent event hosted by Empowered, four mothers recounted their struggles with addiction while pregnant. “It was never my intention to actually have a drug addiction,” said a mother named Amani. “I’ve always wanted to get out of the cycle of relapsing and drug usage.”
Amani, who asked to be identified only by her first name for fear of stigma associated with using drugs while pregnant or after giving birth, said she found the support she needed to treat her addiction in 2021. That’s when she began seeking help at Empowered.
Substance use while pregnant or postpartum is “incredibly stigmatizing,” said Emilie Bruzelius, a postdoctoral fellow in the Department of Epidemiology at Columbia University’s Mailman School of Public Health and author of a study of trends in drug overdose mortality during and after pregnancy. The stigma and fear of interacting with child welfare or law enforcement agencies prevents people from seeking help, she said.
A Rand Corp. study found that states with punitive policies toward mothers with substance use disorders have more cases of neonatal abstinence syndrome. Nevada was among them.
Researchers have found that, in addition to facing fear of punishment, many women don’t have access to treatment during and after pregnancy because few outpatient centers specialize in treating mothers.
Both Nevada and Montana had fewer than one treatment facility with specialized programs for pregnant and postpartum women per 1,000 reproductive-age women with substance use disorders, with Montana ranking in the lowest quintile.
One Health, a community health center covering Montana’s sprawling southeastern plains, is using the newly awarded federal money to train peer support specialists as doulas, professionals specialized in childbirth who can provide support throughout pregnancy and after.
Megkian Doyle, who directs the center’s community-based work, said in one case a survivor of sex trafficking who was drugged by her abusers worked with a recovery doula to prepare for the potential triggers of being exposed to medical workers or needing an IV. In another, a mom in stable recovery from addiction was able to keep her baby when hospital staffers called child protective services because she already had a safety plan with her doula and the agency.
After birth, recovery doulas visit families daily for two weeks, “the window when overdose, relapse, and suicide is happening,” Doyle said. The workers, in their peer support role, can continue helping clients for years.
While doula care, rarely covered by insurance, is unaffordable for many, Medicaid typically covers peer support care. As of late September, 37 states and Washington, D.C., had extended Medicaid benefits to cover care for 12 months postpartum. Montana and Nevada have approved plans to do so. Health centers in similarly rural states have taken note. The program’s latest cohort of recovery doulas includes five peer support specialists from Utah.
With its trauma-informed approach, the Nevada-based Empowered program takes a different tack.
The program focuses on meeting its participants’ most pressing need, which varies depending on the person. Some people need help getting government-issued identification so they can access other social services, including aid from food pantries, said Peterson, the founder and executive director. Others may need safe housing above all.
Empowered is not abstinence-based, meaning its participants do not lose access to services if they relapse or use substances while seeking help. Because some participants may be actively using drugs, the Empowered office is also a distribution site for the overdose reversal medication naloxone and test strips that detect fentanyl, a powerful synthetic opioid that has contributed to jumps in fatal overdose rates in recent years. The program’s staff also provide education about the effects drugs have on an unborn baby during pregnancy.
Being able to be honest with Empowered staff made a difference for Amani.
“I can’t tell you how many times I’ve tripped and fallen but tried to get back up and fallen again,” she said.
The goal is not only to stabilize participants’ lives but to make them resilient — whatever that may look like for each individual. For many, that includes having stable housing, food security, job security, and custody of their children.
To her, Amani said, the Empowered program means love, support, and not being alone.
“I wouldn’t be here, literally, without them,” she said.
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' 'What the Health?': More Medicaid Messiness
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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.
Federal officials have instructed at least 30 states to reinstate Medicaid and Children’s Health Insurance Program coverage for half a million people, including children, after an errant computer program wrongly determined they were no longer eligible. It’s just the latest hiccup in the yearlong effort to redetermine the eligibility of beneficiaries now that the program’s pandemic-era expansion has expired.
Meanwhile, the federal government is on the verge of a shutdown, as a small band of House Republicans resists even a short-term spending measure to keep the lights on starting Oct. 1. Most of the largest federal health programs, including Medicare, have other sources of funding and would not be dramatically impacted — at least at first. But nearly half of all employees at the Department of Health and Human Services would be furloughed, compromising how just about everything runs there.
This week’s panelists are Julie Rovner of KFF Health News, Rachel Roubein of The Washington Post, Sandhya Raman of CQ Roll Call, and Sarah Karlin-Smith of Pink Sheet.
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Among the takeaways from this week’s episode:
- Officials in North Carolina announced the state will expand its Medicaid program starting on Dec. 1, granting thousands of low-income residents access to health coverage. With North Carolina’s change, just 10 states remain that have not expanded the program — yet, considering those states have resisted even as the federal government has offered pandemic-era and other incentives, it is unlikely more will follow for the foreseeable future.
- The federal government revealed that nearly half a million individuals — including children — in at least 30 states were wrongly stripped of their health coverage under the Medicaid unwinding. The announcement emphasizes the tight-lipped approach state and federal officials have taken to discussing the in-progress effort, though some Democrats in Congress have not been so hesitant to criticize.
- The White House is pointing to the possible effects of a government shutdown on health programs, including problems enrolling new patients in clinical trials at the National Institutes of Health and conducting food safety inspections at the FDA.
- Americans are grappling with an uptick in covid cases, as the Biden administration announced a new round of free test kits available by mail. But trouble accessing the updated vaccine and questions about masking are illuminating the challenges of responding in the absence of a more organized government effort.
- And the Biden administration is angling to address health costs at the executive level. The White House took its first step last week toward banning medical debt from credit scores, as the Federal Trade Commission filed a lawsuit to target private equity’s involvement in health care.
- Plus, the White House announced the creation of its first Office of Gun Violence Prevention, headed by Vice President Kamala Harris.
Also this week, Rovner interviews KFF Health News’ Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month,” about a hospital bill that followed a deceased patient’s family for more than a year. If you have an outrageous or infuriating medical bill you’d like to send us, you can do that here.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:
Julie Rovner: JAMA Internal Medicine’s “Comparison of Hospital Online Price and Telephone Price for Shoppable Services,” by Merina Thomas, James Flaherty, Jiefei Wang, et al.
Sarah Karlin-Smith: The Los Angeles Times’ “California Workers Who Cut Countertops Are Dying of an Incurable Disease,” by Emily Alpert Reyes and Cindy Carcamo.
Rachel Roubein: KFF Health News’ “A Decades-Long Drop in Teen Births Is Slowing, and Advocates Worry a Reversal Is Coming,” by Catherine Sweeney.
Sandhya Raman: NPR’s “1 in 4 Inmate Deaths Happen in the Same Federal Prison. Why?” by Meg Anderson.
Also mentioned in this week’s episode:
- KFF Health News’ “Diagnosis: Debt,” by Noam N. Levey and KFF Health News, NPR, and CBS staff.
- The New York Times’ “In Hospitals, Viruses Are Everywhere. Masks Are Not,” by Apoorva Mandavilli.
click to open the transcript
Transcript: More Medicaid Messiness
KFF Health News’ ‘What the Health?’Episode Title: More Medicaid MessinessEpisode Number: 316Published: Sept. 27, 2023
[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 early this week, on Wednesday, Sept. 27, 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 video conference by Rachel Roubein of The Washington Post.
Rachel Roubein: Good morning. Thanks for having me.
Rovner: Sandhya Raman of CQ Roll Call.
Sandhya Raman: Good morning.
Rovner: And Sarah Karlin-Smith of the Pink Sheet.
Sarah Karlin-Smith: Hi, everybody.
Rovner: Later in this episode we’ll have my KFF Health News-NPR “Bill of the Month” interview with Samantha Liss. This month’s bill is literally one that followed a patient to his family after his death. But first, the news. I want to start with Medicaid this week. North Carolina, which approved but didn’t fund its Medicaid expansion earlier this year, approved a budget this week that will launch the expansion starting Dec. 1. That leaves just 10 states that have still not expanded the program to, mostly, low-income adults, since the Affordable Care Act made it possible in, checks notes, 2014. Any other holdout states on the horizon? Florida is a possibility, right, Rachel?
Roubein: Yes. There’s only technically three states that can do ballot measures. Now North Carolina, I believe, was the first state to actually pass through the legislature since Virginia in 2018. A lot of the most recent states, seven conservative-leaning states, instead pursued the ballot measure path. In Florida, advocates have been eyeing a 2026 ballot measure. But the one issue in Florida is that they need a 60% threshold to pass any constitutional amendment, so that is pretty, pretty high and would take a lot of voter support.
Rovner: And they would need a constitutional amendment to expand Medicaid?
Roubein: A lot of the states have been going the constitutional amendment route in terms of Medicaid in recent years. Because what they found was some legislatures would come back and try and change it, but if it’s a constitutional amendment, they weren’t able to do that. But a lot of the holdout states don’t have ballot measure processes, where they could do this — like Alabama, Georgia, etc.
Raman: Kind of just echoing Rachel that this one has been interesting just because it had come through the legislature. And even with North Carolina, it’s been something that we’ve been eyeing for a few years, and that they’d gone a little bit of the way, a little bit of the way a few times. And it was kind of the kind of gettable one within the ones that hadn’t expanded. And the ones we have left, there’s just really not been much progress at all.
Rovner: I would say North Carolina, like Virginia, had a Democratic governor that ran on this and a Republican legislature, or a largely Republican legislature, hence the continuing standoff. It took both states a long time to get to where they had been trying to go. And you’re saying the rest of the states are not split like that?
Raman: Yeah, I think it’ll be a much more difficult hill to climb, especially when, in the past, we had more incentives to expand with some of the previous covid relief laws, and they still didn’t bite. So it’s going to be more difficult to get those.
Rovner: No one’s holding their breath for Texas to expand. Anyway, while North Carolina will soon start adding people to its Medicaid rolls, the rest of the states are shedding enrollees who gained coverage during the pandemic but may no longer be eligible. And that unwinding has been bumpy to say the least. The latest bump came last week when the Department of Health and Human Services revealed that more than half a million people, mostly children, had their coverage wrongly terminated by as many as 30 states. It seems a computer program failed to note that even if a parent’s income was now too high to qualify, that same income could still leave their children eligible. Yet the entire family was being kicked off because of the way the structure of the program worked. I think the big question here is not that this happened, but that it wasn’t noticed sooner. It should have been obvious — children’s eligibility for Medicaid has been higher than adults since at least the 1980s. This unwinding has been going on since this spring. How is this only being discovered now? It’s September. It’s the end of September.
Roubein: Yeah. I mean, this was something advocates who have been closely watching this have been ringing the alarm bells for a while, and then it took time. CMS [the Centers for Medicare & Medicaid Services] had put something out, I believe it was roughly two weeks before they actually then had the roughly half a million children regain coverage — they had put out a, “OK, well, we’re exploring which states.” And lots of reporters were like, “OK, well which state is this an issue?” So yeah, the process seemed like it took some time here.
Rovner: I know CMS has been super careful. I mean, I think they’re trying not to politicize this, because they’ve been very careful not to name states, and in many cases who they know have been wrongly dropping people. I guess they’re trying to keep it as apolitical as possible, but I think there are now some advocates who worry that maybe CMS is being a little too cautious.
Karlin-Smith: Yeah, I think from the other side too, if you’ve talked to state officials, they’re also trying to be really cautious and not criticize CMS. So it seems like both sides are not wanting to go there. But I mean some Democrats in Congress have been critical of how the effort has gone.
Rovner: Yeah. And of course, if the government shuts down, as seems likely at the end of this week, that’s not going to make this whole process any easier, right? The states will still get to do what the states are doing. Their shutdown efforts, or their re-qualification efforts, are not federally funded, but the people at CMS are.
Karlin-Smith: Yeah, that’ll just throw another thorn in this as we’re getting very, very likely headed towards a shutdown at this point on the 27th. So I think that’ll be another barrier for them regardless. And I mean, most CMS money isn’t even affected by the yearly budget anyways because it’s mandatory funding, but that’ll be a barrier for sure.
Rovner: So, speaking of the government shutdown, it still seems more likely than not that Congress will fail to pass either any of the 12 regular spending bills or a temporary measure to keep the lights on when the fiscal year ends at midnight Sunday. That would lead to the biggest federal shutdown since 2013 when, fun fact, the shutdown was an attempt to delay the rollout of the Affordable Care Act. What happens to health programs if the government closes? It’s kind of a big confusing mess, isn’t it?
Roubein: Yeah, well, what we know that would definitely continue and in the short term is Medicare and Medicaid, Obamacare’s federal insurance marketplace. Medicaid has funding for at least the next three months, and there’s research developing vaccines and therapeutics that HHS, they put out their kind of contingency “What happens if there’s a shutdown?” plan. But there’s some things that the White House and others are kind of trying to point to that would be impacted, like the National Institutes of Health may not be able to enroll new patients in clinical trials, the FDA may need to delay some food safety inspections, etc.
Rovner: Sarah, I actually forgot because, also fun fact, the FDA is not funded through the rest of the spending bill that includes the Department of Health and Human Services. It’s funded through the agriculture bill. So even though HHS wasn’t part of the last shutdown in 2018 and 2019, because the HHS funding bill had already gone through, the FDA was sort of involved, right?
Karlin-Smith: Right. So FDA is lumped with the USDA, the Agriculture Department, for the purposes of congressional funding, which is always fun for a health reporter who has to follow both of those bills. But FDA is always kind of a unique one with shutdown, because so much of their funding now is user fees, particularly for specific sections. So the tobacco part of FDA is almost 100% funded by user fees, so they’re not really impacted by a shutdown. Similarly, a lot of drug, medical device applications, and so forth also are totally funded by user fees, so their reviews keep going. That said, the way user fees are, they’re really designated to specific activities.
So, where there isn’t user fees and it’s not considered a critical kind of public health threat, things do shut down, like Rachel mentioned: a lot of food work and inspections, and even on the drug and medical device side, some activities that are related that you might think would continue don’t get funded.
Rovner: Sandhya, is there any possibility that this won’t happen? And that if it does happen, that it will get resolved anytime soon?
Raman: At this point, I don’t think that we can navigate it. So last night, the Senate put out their bipartisan proposal for a continuing resolution that you would attach as an amendment to the FAA, the Federal Aviation [Administration] reauthorization. And so that would temporarily extend a lot of the health programs through Nov. 17. The issue is that it’s not something that if they are able to pass that this week, they’d still have to go to the House. And the House has been pretty adamant that they want their own plan and that the CR that they were interested in had a lot more immigration measures, and things there.
And the House right now has been busy attempting to pass this week four of the 12 appropriations bills. And even if they finished the four that they did, that they have on their plate, that would still mean going to the Senate. And Biden has said he would veto those, and it’s still not the 12. So at this point, it is almost impossible for us to not at least see something short-term. But whether or not that’s long-term is I think a question mark in all the folks that I have been talking to about this right now.
Rovner: Yeah, we will know soon enough what’s going to happen. Well, meanwhile, because there’s not enough already going on, covid is back. Well, that depends how you define back. But there’s a lot more covid going around than there was, enough so that the federal government has announced a new round of free tests by mail. And there’s an updated covid vaccine — I think we’re not supposed to call it a booster — but its rollout has been bumpy. And this time it’s not the government’s fault. That’s because this year the vaccine is being distributed and paid for by mostly private insurance. And while lots of people probably won’t bother to get vaccinated this fall, the people who do want the vaccine are having trouble getting it. What’s happening? And how were insurers and providers not ready for this? We’d been hearing the updated vaccines would be available in mid-September for months, Sarah. I mean they really literally weren’t ready.
Karlin-Smith: Yeah. I mean, it’s not really clear why they weren’t ready, other than perhaps they felt they didn’t need to be, to some degree. I mean, normally, I know I was reading actually because we’ve also recently gotten RSV [respiratory syncytial virus] vaccine approvals — normally they actually have almost like a year, I think, to kind of add vaccines to plans and schedules and so forth, and pandemic covid-related laws really shortened the time for covid. So they should have been prepared and ready. They knew this was coming. And people are going to pharmacies, or going to a doctor’s appointment, and they’re being told, “Well, we can give you the vaccine, but your insurance plan isn’t set up to cover it yet, even though technically you should be.” There seems like there’s also been lots of distribution issues where again, people are going to sites where they booked appointments, and they’re saying, “Oh, actually we ran out.” They’re trying another site. They’ve run out.
So, it’s sort of giving people a sense of the difference of what happens when sort of the government shepherds an effort and everybody — things are a bit simplified, because you don’t have to think about which site does your insurance cover. There is a program for people who don’t have insurance now who can get the vaccine for free, but again, you’re more limited in where you can go. There’s not these big free clinics; that’s really impacting childhood vaccinations, because, again, a lot of children can’t get vaccinated at the pharmacy. So I think people are being reminded of what normal looked like pre-covid, and they’re realizing maybe we didn’t like this so much after all.
Rovner: Yeah, it’s not so efficient either. All the people who said, “Oh, the private sector could do this so much more efficiently than the government.” And it’s like, we’re ending up with pretty much the same issues, which is the people who really want the vaccine are chasing around and not finding it. And I know HHS Secretary Becerra went and had this event at a D.C. pharmacy where he was going to get his vaccine. And I think the event was intended to encourage people to go get vaccinated, but it happened right at the time when the big front surge of people who wanted to get vaccinated couldn’t find the vaccine.
Karlin-Smith: I think that’s a big concern because we’ve had such low uptake of booster or additional covid shots over the past couple of years. So the people who are sort of the most go-getters, the ones who really want the shots, are having trouble and feeling a bit defeated. What does that mean for the people that are less motivated to get it, who may not make a second or third attempt if it’s not easy? We sort of know, and I think public health folks kind of beat the drum, that sort of just meeting people where they are, making it easy, easy, easy, is really how you get these things done. So it’s hard to see how we can improve uptake this year when it’s become more complicated, which I think is going to be a big problem moving forward.
Rovner: Yeah. Right. And clearly these are issues that will be ironed out probably in the next couple of weeks. But I think what people are going to remember, who are less motivated to go get their vaccines, is, “Oh my God, these people I know tried to get it and it took them weeks. And they showed up for their appointment and they couldn’t get it.” And it’s like, “It was just too much trouble and I can’t deal with it.” And there’s also, I think you mentioned that there’s an issue with kids who are too young to get the vaccine too, right?
Karlin-Smith: Right. Still, I think people forget that you have to be 6 months to get the vaccine. If you’re under 3, you basically cannot get it in a pharmacy, so you have to get it in a doctor’s office. But a lot of people are reporting online their doctor’s office sort of stopped providing covid vaccines. So they’re having trouble just finding where to go. It seems like the distribution of shots for younger children has also been a bit slower as well. And again, this is a population where just even primary series uptake has been a problem. And people are in this weird gap now where, if you can’t get access to the new covid vaccine but your kid is eligible, the old vaccine isn’t available.
So you’re sort of in this gap where your kid might not have had any opportunity yet to get a covid vaccine, and there’s nothing for them. I think we forget sometimes that there are lots of groups of people that are still very vulnerable to this virus — including newborn babies who haven’t been exposed at all, and haven’t gotten a chance to get vaccinated.
Rovner: Yeah. So this is obviously still something that we need to continue to look at. Well, meanwhile, mask mandates are making a comeback, albeit a very small one. And they are not going over well. I’ve personally been wearing a mask lately because I’m traveling later this week and next, and don’t want to get sick, at least not in advance. But masks are, if anything, even more controversial and political than they were during the height of the pandemic. Does public health have any ideas that could help reverse that trend? Or are there any other things we could do? I’ve seen some plaintiff complaints that we’ve not done enough about ventilation. That could be something where it could help, even if people won’t or don’t want to wear masks. I mean, I’m surprised that vaccination is still pretty much our only defense.
Karlin-Smith: I think with masks, one thing that’s made it hard for different parts of the health system and lower-level kind of state public health departments to deal with masks is that the CDC [Centers for Disease Control and Prevention] recommendations around masking are pretty loose at this point. So The New York Times had a good article about hospitals and masking, and the kind of guidance around triggers they’ve given them are so vague. They kind of are left to make their own decisions. The CDC actually still really hasn’t emphasized the value of KN95 and N95 respirators over surgical masks. So I think it becomes really hard for those lower-level institutions to sort of push for something that is kind of controversial politically. And a lot of people are just tired of it when they don’t have the support of those bigger institutions saying it. And some of just even figuring out levels of the virus and when that should trigger masking.
It’s much harder to track nowadays because so much of our systems and data reporting is off. So, we have this sense we’re in somewhat of a surge now. Hospitalizations are up and so forth. But again, it’s a lot easier for people to make these decisions and figure out when to pull triggers when you have clear data that says, “This is what’s going on now.” And to some extent we’re … again, there’s a lot of evidence that points to a lot of covid going around now, but we don’t have that sort of hard data that makes it a lot easier for people to justify policy choices.
Raman: You just brought up ventilation and it took time, one, for some scientists to realize that covid is also spread through ultra-tiny particles. But it also took, after that, a while for the White House to pivot its strategy to stress ventilation measures in addition to masks, and face covering. So a lot of places are still kind of behind on having better ventilation in an office, or kind of wherever you’re going.
Rovner: Yeah, I mean, one would think that improving ventilation in schools would improve, not only not spreading covid, but not spreading all of the respiratory viruses that keep kids out of school and that make everybody sick during the winter, during the school year.
Roubein: I was going to piggyback on something Sarah said, which was about how the CDC doesn’t have clear benchmarks on when there should be a guideline for what is high transmission in the hospital for them to reinstate a mask mandate or whatever. But there’s also nuance to consider there. Within that there’s, is there a partial masking rule? Which is like: Does the health care staff have to wear them versus the patients? And does that have enough benefit on its own if it’s only required to one versus the other? I mean, I know that a lot of folks have called for more strict rules with that, but then there’s also the folks that are worried about the backlashes. This has gotten so politicized, how many different medical providers have talked about angst at them, attacks at them, over the polarization of covid? So there’s so many things that are intertwined there that it’s tough to institute something.
Karlin-Smith: I think the other thing is we keep forgetting this is not all about covid. We’ve learned a lot of lessons about public health that could be applicable, like you mentioned in schools, beyond covid. So if you’re in the emergency room, because you have cancer and you need to see a doctor right away. And you’re sitting next to somebody with RSV or the flu, it would also be beneficial to have that patient wearing a mask because if you have cancer, you do not need to add one of these infectious diseases on top of it. So it’s just been interesting, I think, for me to watch because it seemed like at different points in this crisis, we were sort of learning things beyond covid for how it could improve our health care system and public health. But for the most part, it seems like we’ve just kind of gone back to the old ways without really thinking about what we could incorporate from this crisis that would be beneficial in the future.
Rovner: I feel like we’ve lost the “public” in public health. That everybody is sort of, it’s every individual for him or herself and the heck with everybody else. Which is exactly the opposite of how public health is supposed to work. But perhaps we will bounce back. Well, moving on. The Biden administration, via the Consumer Financial Protection Bureau, the CFPB, took the first steps last week to ban medical debt from credit scores, which would be a huge step for potentially tens of millions of Americans whose credit scores are currently affected by medical debt. Last year, the three major credit bureaus, Equifax, Experian, and TransUnion, agreed not to include medical debt that had been paid off, or was under $500 on their credit reports. But that still leaves lots and lots of people with depressed scores that make it more expensive for them to buy houses, or rent an apartment, or even in some cases to get a job. This is a really big deal if medical debt is going to be removed from people’s credit reports, isn’t it?
Roubein: Yeah. I think that was an interesting move when they announced that this week. Because the CFPB had mentioned that in a report they did last year, 20% of Americans have said that they had medical debt. And it doesn’t necessarily appear on all credit reports, but like you said, it can. And having that financial stress while going through a health crisis, or someone in your family going through a health crisis, is layers upon layers of difficulty. And they had also said in their report that medical billing data is not an accurate indicator of whether or not you’ll repay that debt compared to other types of credit. And it also has the layers of insurance disputes, and medical billing errors, and all that sort of thing. So this proposal that they have ends up being finalized as a rule, it could be a big deal. Because some states have been trying to do this on a state-by-state level, but still in pretty early stages in terms of a lot of states being on board. So this can be a big thing for a fifth of people.
Rovner: Yeah, many people. I’m going to give a shout-out here to my KFF Health News colleague Noam Levey, who’s done an amazing project on all of this, and I think helped sort of push this along. Well, while we are on the subject of the Biden administration and money in health care, the Federal Trade Commission is suing a private equity-backed doctors group, U.S. Anesthesia Partners, charging anti-competitive behavior, that it’s driving up the price of anesthesia services by consolidating all the big anesthesiology practices in Texas, among other things. FTC Chair Lina Khan said the agency “will continue to scrutinize and challenge serial acquisitions roll-ups and other stealth consolidation schemes that unlawfully undermine fair competition and harm the American public.” This case is also significant because the FTC is suing not just the anesthesia company, but the private equity firm that backs it, Welsh, Carson, Anderson & Stowe, which is one of the big private equity firms in health care. Is this the shot across the bow for private equity and health care that a lot of people have been waiting for? I mean, we’ve been talking about private equity and health care for three or four years now.
Karlin-Smith: I think that’s what the FTC is hoping for. They’re saying not just that we’re going after anti-competitive practices in health care, that, I think, they’re making a clear statement that they’re going after this particular type of funder, which we’ve seen has proliferated around the system. And I think this week there was a report from the government showing that CMS can’t even track all of the private equity ownership of nursing homes. So we know this isn’t the only place where doctors’ practices being bought up by private equity has been seen as potentially problematic. So this has been a very sort of activist, I think, aggressive FTC in health care in general, and in a number of different sectors. So I think they’re ready to deliberate, with their actions and warnings.
Rovner: Yeah, it’s interesting. I mean, we mostly think, those of us who have followed the FTC in healthcare, which gets pretty nerdy right there, usually think of big hospital groups trying to consolidate, or insurers trying to consolidate these huge mega-mergers. But what’s been happening a lot is these private equity companies have come in and bought up physician practices. And therefore they become the only providers of anesthesia, or the only providers of emergency care, or the only providers of kidney dialysis, or the only providers of nursing homes, and therefore they can set the prices. And those are not the level of deals that tend to come before the FTC. So I feel like this is the FTC saying, “See you little people that are doing big things, we’re coming for you too.” Do we think this might dampen private equity’s enthusiasm? Or is this just going to be a long-drawn-out struggle?
Roubein: I could see it being more of a long-drawn-out struggle because even if they’re showing it as an example, there’s just so many ways that this has been done in so many kind of sectors as you’ve seen. So I think it remains to be seen further down the line as this might happen in a few different ways to a few different folks, and how that kind of plays out there. But it might take some time to get to that stage.
Karlin-Smith: I was going to say it’s always worth also thinking about just the size and budget of the FTC in comparison to the amount of private actors like this throughout the health system. So I mean, I think that’s one reason sometimes why they do try and kind of use that grandstanding symbolic messaging, because they can’t go after every bad actor through that formal process. So they have to do the signaling in different ways.
Raman: I think probably as we’ve all learned as health reporters, it takes a really long time for there to be change in the health care system.
Rovner: And I was just going to say, one thing we know about people who are in health care to make money is that they are very creative in finding ways to do it. So whatever the rules are, they’re going to find ways around them and we will just sort of keep playing this cat and mouse for a while. All right, well finally this week, a story that probably should have gotten more attention. The White House last week announced creation of the first-ever Office of Gun Violence Prevention to be headed by Vice President Kamala Harris. Its role will be to help implement the very limited gun regulation passed by Congress in 2022, and to coordinate other administration efforts to curb gun violence. I know that this is mostly for show, but sometimes don’t you really have to elevate an issue like this to get people to pay attention, to point out that maybe you’re trying to do something? Talk about things that have been hard for the government to do over the last couple of decades.
Raman: It took Congress a long time to then pass a new gun package, which the shooting in Uvalde last year ended up catalyzing. And Congress actually got something done, which was more limited than some gun safety advocates wanted. But it does take a lot to get gun safety reform across the finish line.
Rovner: I know. I mean, it’s one of those issues that the public really, really seems to care about, and that the government really, really, really has trouble doing. I’ve been covering this so long, I remember when they first banned gun violence research at HHS back in the mid-1990s. That’s how far back I go, that they were actually doing it. And the gun lobby said, “No, no, no, no, no. We don’t really want these studies that say that if you have a gun in the house, it’s more likely to injure somebody, and not necessarily the bad guy.” They were very unhappy, and it took until three or four years ago for that to be allowed to be funded. So maybe the idea that they’re elevating this somewhat, to at least wave to the public and say, “We’re trying. We’re fighting hard. We’re not getting very far, but we’re definitely trying.” So I guess we will see how that comes out.
All right, well that is this week’s news. Now, we will play my “Bill of the Month” interview with Sam Liss, and then we’ll come back with our extra credits. I am pleased to welcome to the podcast my KFF Health News colleague Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Welcome.
Liss: Hi.
Rovner: This month’s bill involves a patient who died in the hospital, right? Tell them who he was, what he was sick with, and about his family.
Liss: Yeah. So Kent Reynolds died after a lengthy hospital stay in February of 2022. He was actually discharged after complications from colon cancer, and died in his home. And his widow, Eloise Reynolds, was left with a series of complicated hospital bills, and she reached out to us seeking help after she couldn’t figure them out. And her and Kent were married for just shy of 34 years. They lived outside of St. Louis and they have two adult kids.
Rovner: So Eloise Reynolds received what she assumed was the final hospital bill after her husband died, which she paid, right?
Liss: Yeah, she did. She paid what she thought was the final bill for $823, but a year later she received another bill for $1,100. And she was confused as to why she owed it. And no one could really give her a sufficient answer when she reached out to the hospital system, or the insurance company.
Rovner: Can a hospital even send you a bill a year after you’ve already paid them?
Liss: You know what, after looking into this, we learned that yeah, they actually can. There’s not much in the way that stops them from coming after you, demanding more money, months, or even years later.
Rovner: So this was obviously part of a dispute between the insurance company and the hospital. What became of the second bill, the year-later bill?
Liss: Yeah. After Eloise Reynolds took out a yardstick and went line by line through each charge and she couldn’t find a discrepancy or anything that had changed, she reached out to KFF Health News for help. And she was still skeptical about the bill and didn’t want to pay it. And so when we reached out to the health system, they said, “Actually, you know what? This is a clerical error. She does not owe this money.” And it sort of left her even more frustrated, because as she explained to us, she says, “I think a lot of people would’ve ended up paying this additional amount.”
Rovner: So what’s the takeaway here? What do you do if you suddenly get a bill that comes, what seems, out of nowhere?
Liss: The experts we talked to said Eloise did everything right. She was skeptical. She compared, most importantly, the bills that she was getting from the hospital system against the EOBs that she was getting from her insurance company.
Rovner: The explanation of benefits form.
Liss: That’s right. The explanation of benefits. And she was comparing those two against one another, to help guide her on what she should be doing. And because those were different between the two of them, she was left even more confused. I think folks that we spoke to said, “Yeah, she did the right thing by pushing back and demanding some explanations.”
Rovner: So I guess the ultimate lesson here is, if you can’t get satisfaction, you can always write to us.
Liss: Yeah, I hate to say that in a way, because that’s a hard solution to scale for most folks. But yeah, I mean, I think it points to just how confusing our health care system is. Eloise seemed to be a pretty savvy health care consumer, and she even couldn’t figure it out. And she was pretty tenacious in her pursuit of making phone calls to both the insurance company and the hospital system. And I think when she couldn’t figure that out, and she finally turned to us asking for help.
Rovner: So well, another lesson learned. Samantha Liss, thank you very much for joining us.
Liss: Thanks.
Rovner: Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.
OK, we’re back. 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. Sarah, you were the first to choose this week, so you get to go first.
Karlin-Smith: Sure. I looked at a story in the Los Angeles Times, “California Workers Who Cut Countertops Are Dying of an Incurable Disease,” by Emily Alpert Reyes and Cindy Carcamo. Hopefully I didn’t mispronounce her name. They wrote a really fascinating but sad story about people working in an industry where they’re cutting engineered stone countertops for people’s kitchens and so forth. And because of the materials in this engineered product, they’re inhaling particles that is basically giving people at a very young age incurable and deadly lung disease. And it’s an interesting public health story about sort of the lack of protection in place for some of the most vulnerable workers. It seems like this industry is often comprised of immigrant workers. Some who kind of essentially go to … outside a Home Depot, the story suggests, or something like that and kind of get hired for day labor.
So they just don’t have the kind of power to sort of advocate for protections for themselves. And it’s just also an interesting story to think about, as consumers I think people are not always aware of the costs of the products they’re choosing. And how that then translates back into labor, and the health of the people producing it. So, really fascinating, sad piece.
Rovner: Another product that you have to sort of … I remember when they first were having the stories about the dust in microwave popcorn injuring people. Sandhya, why don’t you go next?
Raman: So my extra credit this week is from NPR and it’s by Meg Anderson. And it’s called “1 in 4 Inmate Deaths Happen in the Same Federal Prison. Why?” This is really interesting. It’s an investigation that looks at the deaths of individuals who died either while serving in federal prison or right after. And they looked at some of the Bureau of Prisons data, and it showed that 4,950 people had died in custody over the past decade. But more than a quarter of them were all in one correctional facility in Butner, North Carolina. And the investigation found out that the patients here and nationwide are dying at a higher rate, and the incarcerated folks are not getting care for serious illnesses — or very delayed care, until it’s too late. And the Butner facility has a medical center, but a lot of times the inmates are being transferred there when it was already too late. And then it’s really sad the number of deaths is just increasing. And just, what can be done to alleviate them?
Rovner: It was a really interesting story. Rachel.
Roubein: My extra credit, the headline is “A Decades-Long Drop in Teen Births Is Slowing, and Advocates Worry a Reversal Is Coming,” by Catherine Sweeney from WPLN, in partnership with KFF Health News. And she writes about the national teen birth rate and how it’s declined dramatically over the past three decades. And that, essentially, it’s still dropping, but preliminary data released in June from the CDC shows that that descent may be slowing. And Catherine had talked to doctors and other service providers and advocates, who essentially expressed concern that the full CDC dataset release later this year can show a rise in teen births, particularly in Southern states. And she talked to experts who pointed to several factors here, including the Supreme Court’s decision to overturn Roe v. Wade, intensifying political pushback against sex education programs, and the impact of the pandemic on youth mental health.
Rovner: Yeah. There’ve been so many stories about the decline in teen birth, which seemed mostly attributable to them being able to get contraception. To get teens not to have sex was less successful than getting teens to have safer sex. So we’ll see if that tide is turning. Well, I’m still on the subject of health costs this week. My story is a study from JAMA Internal Medicine that was conducted in part by Shark Tank panelist Mark Cuban, for whom health price transparency has become something of a crusade. This study is of a representative sample of 60 hospitals of different types conducted by researchers from the University of Texas. And it assessed whether the online prices posted for two common procedures, vaginal childbirth and a brain MRI, were the same as the prices given when a consumer called to ask what the price would be. And surprise. Mostly they were not. And often the differences were very large. In fact, to quote from the study, “For vaginal childbirth, there were five hospitals with online prices that were greater than $20,000, but telephone prices of less than $10,000. The survey was done in the summer of 2022, which was a year and a half after hospitals were required to post their prices online.” At some point, you have to wonder if anything is going to work to help patients sort out the prices that they are being charged for their health care. Really eye-opening study.
All right, that is 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 us a review; that helps other people find us, too. Special thanks as always to our amazing engineer, Francis Ying. 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, @jrovner. Sarah.
Karlin-Smith: I’m @SarahKarlin, or @sarahkarlin-smith.
Rovner: Sandhya.
Raman: @SandhyaWrites
Rovner: Rachel.
Roubein: @rachel_roubein
Rovner: We will be back in your feed next week. Until then, be healthy.
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1 year 6 months ago
Courts, COVID-19, Health Care Costs, Health Industry, Insurance, Medicaid, Medicare, Multimedia, Public Health, States, Guns, KFF Health News' 'What The Health?', Legislation, Podcasts, vaccines
Un padre soñaba con una casa para su familia. La deuda médica casi los deja en la calle
DENVER. — A Kayce Atencio solía atormentarlo un pensamiento mientras trabajaba en un refugio para personas sin hogar en el centro de Denver. “Podría haber sido yo”, dijo Atencio, de 30 años, quien vive con su hijo y su hija en un pequeño apartamento, no muy lejos del refugio.
Casi lo fue. Atencio y sus hijos durmieron durante años en los sofás de amigos o en casa de familiares, sin poder alquilar un apartamento debido a su mal historial de crédito. Una de las principales razones, dijo, fue la deuda médica.
Atencio sufrió un ataque al corazón a los 19 años, desencadenado por una afección congénita no diagnosticada. Las deudas por su atención devastaron su crédito. “Siempre sentí que no podía salir adelante”, dijo, recordando una vida de trabajos sin futuro y préstamos con intereses altos mientras trataba de mantenerse al día con los cobradores de deudas.
A los 25 años, tuvo que declararse en quiebra.
En todo el país, la deuda médica obliga a legiones de estadounidenses a hacer sacrificios dolorosos. Muchos recortan gastos en alimentos, asumen trabajos adicionales o agotan sus ahorros para la jubilación. Para millones como Atencio, el sistema de atención médica amenaza sus propios hogares.
Esto ha resultado ser especialmente devastador en comunidades como Denver, donde los precios de las viviendas se han disparado, volviéndose inaccesibles para muchos residentes, alimentando una crisis que ha dejado a miles de personas sin hogar y durmiendo en las calles.
En Community Economic Defense Project, o CEDP, una organización sin fines de lucro de Denver que ayuda a las personas que enfrentan el desalojo o la ejecución hipotecaria de sus hogares, aproximadamente dos tercios de los clientes tienen deuda médica, según una encuesta informal realizada por KFF Health News y la organización.
Cerca de la mitad de las casi 70 personas encuestadas dijeron que la deuda médica desempeñó un papel en su problema de vivienda, y aproximadamente una de cada 6 dijo que fue un factor importante.
“Todo el día escucho sobre la deuda médica”, dijo Kaylee Mazza, defensora de inquilinos que trabaja en una clínica legal de CEDP en el tribunal de Denver que ofrece ayuda a los inquilinos que enfrentan procesos de desalojo. “Está en todas partes”.
A nivel nacional, alrededor de 100 millones de personas tienen alguna forma de deuda de atención médica. De ellos, aproximadamente una de cada 5 dijo que las deudas los obligaron a cambiar su situación de vida, incluyendo mudarse con amigos o familiares, según una encuesta de KFF de 2022.
Un creciente cuerpo de investigaciones muestra que la vivienda estable es fundamental para el bienestar físico y mental. Algunos sistemas médicos importantes, incluyendo varios en Colorado, incluso han comenzado a invertir en viviendas asequibles en sus comunidades, citando la necesidad de abordar los llamados determinantes sociales de salud.
Pero a medida que los hospitales y otros proveedores médicos dejan a millones en deuda, socavan inadvertidamente la salud de la comunidad, dijo Brian Klausner, médico en una clínica que atiende a pacientes sin hogar en Raleigh, Carolina del Norte.
“Muchos de los hospitales en todo el país que ahora públicamente se comprometen a abordar las inequidades en salud y eliminar las barreras para la salud están contribuyendo simultáneamente a crear estos mismos problemas”, dijo Klausner. “A nadie le gusta el elefante en la habitación, pero la realidad es que hay miles de estadounidenses enfermos que probablemente están sin hogar, y enfermos, debido a la deuda médica”.
Efecto dominó
La deuda médica puede socavar la seguridad de la vivienda de varias maneras. Para algunos, debilita su crédito, lo que dificulta alquilar o solicitar una hipoteca. El año pasado, aproximadamente uno de cada 8 consumidores estadounidenses con un informe de crédito tenía una deuda médica en él, según el Urban Institute, una organización sin fines de lucro.
Los pacientes con condiciones médicas crónicas pueden atrasarse en el pago del alquiler o de las cuotas de su hogar mientras luchan por mantener bajo control las deudas médicas para preservar el acceso a la atención médica. KFF Health News encontró que muchos hospitales y otros proveedores rechazan a pacientes con cuentas pendientes.
Denise Beasley, quien también ayuda a clientes en CEDP en Denver, dijo que muchas personas mayores, que normalmente dependen más de los médicos y los medicamentos, creen que deben pagar sus cuentas médicas y de farmacia antes que cualquier otra cosa. “Están aterrados”, dijo.
Para otros, esta deuda puede aumentar las dificultades financieras provocadas por un accidente o una enfermedad inesperada que los obliga a dejar de trabajar, poniendo en peligro su cobertura de salud o su capacidad para pagar la vivienda.
En Seattle, los investigadores encontraron una deuda médica generalizada entre los residentes de campamentos de personas sin hogar. Y aquellos con este tipo de deudas tendían a experimentar la falta de vivienda durante dos años más que los residentes de campamentos sin deuda.
En términos más generales, las personas con deuda médica tienen más probabilidades de decir que la deuda les ha impedido rentar o avanzar con una hipoteca, en comparación con las personas que tienen préstamos estudiantiles o de tarjetas de crédito, según una encuesta nacional de 2019 realizada por la empresa de bienes raíces Zillow entre inquilinos, compradores de viviendas y dueños de propiedades.
Para Atencio, quien dejó su hogar a los 16 años, sus problemas con la deuda médica comenzaron con el ataque al corazón. Estaba trabajando en una gasolinera y viviendo en Trinidad, una pequeña ciudad en el sur de Colorado cerca de la frontera con Nuevo México.
Fue llevado de urgencia a un hospital local, donde fue sometido a una cirugía. Las facturas, que superaban los $50,000, no estaban cubiertas por su plan de salud porque había acudido a un proveedor fuera de la red sin saberlo, contó. “Luché lo más que pude, pero no podía pagar un abogado. Estaba atrapado”.
Atencio, quien es transgénero, tiene el pelo oscuro corto y un gran tatuaje en su antebrazo derecho en memoria de dos amigos que murieron en un accidente automovilístico. Sentado en un sofá viejo en un apartamento con rejas en las ventanas, es filosófico acerca de su largo periplo desde esa crisis médica a través de años de deuda e inseguridad de vivienda. “Hemos salido adelante”, dijo. “Pero tuvo un costo”.
Cuando su crédito bajó a cerca de 300, la calificación más baja, había pocos lugares a los que recurrir en busca de ayuda. La relación de Atencio con sus padres, quienes se divorciaron cuando él tenía 2 años, había sido tensa durante años. Atencio se casó a los 18, pero él y su esposo rara vez tenían suficiente para llegar a fin de mes. “Recuerdo pensar, ‘¿Qué tipo de comienzo de mi vida adulta es este?'”.
Finalmente, fueron acogidos por la madre de su esposo. “Si no fuera por ella, habríamos estado sin hogar”, dijo. Pero salir de la deuda fue agonizante.
“Terminas en este ciclo”, dijo. “Te endeudas. Luego tomas préstamos para tratar de pagar parte de la deuda. Pero luego está todo ese interés”. Con un mal historial de crédito, Atencio en ocasiones dependía de prestamistas a los que hay que devolver el dinero pronto, cuyas altas tasas de interés pueden aumentar drásticamente lo que deben los prestatarios.
Además, muchos empleadores también verifican los puntajes de crédito, lo que dificultaba que Atencio encontrara algo más que trabajos mal remunerados.
El trabajo en el refugio fue un paso adelante, y este año Atencio obtuvo el apartamento, que está reservado para familias monoparentales en riesgo de quedarse sin hogar. (Atencio se separó de su esposo el año pasado).
Desafíos de vivienda en Colorado
Las luchas de vivienda de Atencio están lejos de ser únicas. Jim y Cindy Powers, quienes viven en Greeley, una pequeña ciudad al norte de Denver, vieron colapsar sus propios sueños de vivienda después de que a Cindy se le diagnosticara una afección potencialmente mortal que requirió múltiples cirugías y dejó a la pareja con más de $250,000 en deuda médica.
Cuando los Powers se declararon en quiebra, el acuerdo protegió su hogar. Pero su hipoteca fue vendida y el nuevo prestamista rechazó el plan de pago. Perdieron la casa.
Lindsey Vance, de 40 años, quien se mudó a Denver hace cinco años en busca de viviendas más asequibles que en el área de Washington, DC, de donde es originaria, aún no puede comprar una casa debido a deudas médicas. Ella y su esposo tienen un ingreso de seis cifras, pero las facturas médicas por incluso atención de rutina que ha luchado por pagar desde sus 20 años han afectado su crédito, dificultando la obtención de un préstamo. “Estamos atrapados en un punto muerto”, dijo.
En Denver y sus alrededores, funcionarios electos, líderes empresariales y otros se han mostrado cada vez más preocupados por la deuda médica mientras buscan formas de abordar lo que muchos ven como una crisis de vivienda.
“Son cosas profundamente conectadas”, dijo Sarah Parady, miembro del Concejo Municipal de Denver. “A medida que los precios de la vivienda han subido y subido, he visto a más y más personas, especialmente personas con problemas médicos y deudas, perder la seguridad en la vivienda”.
Parady, quien se postuló para el cargo el año pasado para abordar la asequibilidad de la vivienda, está liderando un esfuerzo para que la ciudad compre y cancele la deuda médica de los residentes de la ciudad.
Impulsado por los precios disparados y las tasas de interés en aumento, el costo de comprar una vivienda en Denver se más que duplicó desde 2015 hasta 2022, según un análisis reciente. Y con los alquileres también aumentando, los desalojos están en alza luego del paréntesis de los dos primeros años de la pandemia.
Tal vez en ningún lugar la crisis de Denver es más visible que en las calles. El centro de la ciudad está lleno de tiendas de campaña y campamentos, incluido uno que se extiende por varias cuadras cerca del refugio y la clínica donde Atencio solía trabajar. Según un conteo, la población sin hogar del área metropolitana de Denver aumentó casi un 50% desde 2020 hasta 2023.
CEDP, que fue fundado para ayudar a los residentes con desafíos de vivienda desencadenados por la pandemia, se unió este año a otros defensores de consumidores y pacientes de Colorado para presionar a la legislatura en busca de protecciones más sólidas para los pacientes con deuda médica.
Y en junio, Colorado promulgó una ley pionera que prohíbe que la deuda médica se incluya en los informes de crédito de los residentes o se tenga en cuenta en sus puntajes crediticios, una medida que colocó al estado a la vanguardia de los esfuerzos a nivel nacional para ampliar las protecciones contra las deuda para los pacientes.
Algunos otros estados están considerando medidas similares. Y en Washington, DC, defensores de consumidores y pacientes están presionando para que se tomen medidas federales para limitar las facturas médicas en los informes de crédito. En la mayoría de los estados, incluyendo muchos con las tasas más altas de deuda médica, los pacientes aún no tienen tales protecciones.
Por su parte, Atencio espera que el nuevo apartamento marque un punto de inflexión.
El hogar es modesto, una pequeña unidad en una vieja torre de concreto. Hay un guardia de seguridad en la puerta principal y pasillos largos pintados de azul y marrón institucional.
La familia de Atencio se está instalando, junto con cuatro ratas mascotas: Stitch, Cheese, Peach y Bubbles, que viven en una jaula grande en la sala de estar. “Esto se siente como libertad”, dijo Atencio.
Ha tratado de darles a sus hijos, de 5 y 11 años, una sensación de seguridad: comidas caseras y espacio para jugar o pasar el rato en sus propios dormitorios. Como todos los padres, se preocupa por el tiempo que pasan frente a las pantallas y frunce el ceño cuando critican lo que hay para cenar. (No les gustaron las papas que puso en un asado al horno).
Todos son estudiantes a tiempo completo: Atencio, que dejó su trabajo en el refugio, está cursando una maestría en trabajo social. Su hijo acaba de empezar el jardín de infantes y su hija está en la escuela media. “Tengo grandes planes y grandes objetivos”, dijo.
Y con varios miles de dólares de deuda médica aún por pagar, agregó que tiene cuidado de no llevar a sus hijos a un hospital o médico fuera de la red. “No cometeré ese error de nuevo”, dijo.
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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1 year 7 months ago
Health Care Costs, Noticias En Español, States, Colorado, Cost of Living, Diagnosis: Debt, Homeless, Investigation
A Father Dreamed of a Home for His Family. Medical Debt Nearly Pushed Them Onto the Streets.
DENVER — Kayce Atencio used to be haunted by a thought while working at a homeless shelter in downtown Denver. “It could have been me,” said Atencio, 30, who lives in a small apartment with his son and daughter not far from the shelter.
It nearly was. Atencio and his children for years slept on friends’ couches or stayed with family, unable to rent an apartment because of poor credit. A big reason, he said, was medical debt.
Atencio had a heart attack at 19, triggered by an undiagnosed congenital condition. The debts from his care devastated his credit score. “It always felt like I just couldn’t get a leg up,” he said, recalling a life of dead-end jobs and high-interest loans as he tried to stay ahead of debt collectors. By 25, he’d declared bankruptcy.
Across the country, medical debt forces legions of Americans to make painful sacrifices. Many cut back on food, take on extra work, or drain retirement savings. For millions like Atencio, the health care system is threatening their very homes.
That’s proven particularly devastating in communities like Denver, where skyrocketing prices have put housing out of reach for many residents and fueled a crisis that’s left thousands homeless and sleeping on the streets.
At the Community Economic Defense Project, or CEDP, a Denver nonprofit that helps people facing eviction or home foreclosure, about two-thirds of clients have medical debt, an informal survey by KFF Health News and the organization suggests. Close to half of the nearly 70 people surveyed said medical debt played a role in their housing issue, with about 1 in 6 saying it was a major factor.
“All day long I hear about medical debt,” said Kaylee Mazza, a tenant advocate who staffs a CEDP legal clinic at the Denver courthouse that offers aid to tenants going through eviction proceedings. “It’s everywhere.”
Nationwide, about 100 million people have some form of health care debt. Of those, about 1 in 5 said the debts have forced them to change their living situation, including moving in with friends or family, according to a 2022 KFF poll.
A growing body of evidence shows that stable housing is critical to physical and mental well-being. Some major medical systems — including several in Colorado — have even begun investing in affordable housing in their communities, citing the need to address what are sometimes called social determinants of health.
But as hospitals and other medical providers leave millions in debt, they inadvertently undermine community health, said Brian Klausner, a physician at a clinic serving homeless patients in Raleigh, North Carolina.
“Many of the hospitals across the country that are now publicly vowing to address health inequities and break down barriers to health are simultaneously helping to create these very problems,” Klausner said. “Nobody likes the elephant in the room, but the reality is that there are thousands of sick Americans who are likely homeless — and sick — because of medical debt.”
A Downward Spiral
Medical debt can undermine housing security in several ways. For some, it depresses credit scores, making it difficult to get a lease or a mortgage. Last year, about 1 in 8 U.S. consumers with a credit report had a medical debt listed on it, according to the nonprofit Urban Institute.
Patients with chronic medical conditions may fall behind on rent or home payments as they scramble to keep medical debts in check to preserve access to health care. Many hospitals and other providers will turn away patients with outstanding bills, KFF Health News found.
Denise Beasley, who also assists clients at CEDP in Denver, said many older people, who typically depend most on physicians and medications, believe they must pay their medical and pharmacy bills before anything else. “The elderly are terrified,” she said.
For others, such debt can compound financial struggles brought on by an accident or unexpected illness that forces them to stop working, jeopardizing their health coverage or ability to pay for housing.
In Seattle, researchers found widespread medical debt among residents in homeless encampments. And those with such debt tended to experience homelessness two years longer than encampment residents without it.
More broadly, people with medical debt are more likely to say the debt has caused them to be turned down for a rental or a mortgage than people with student loans or credit card debt, according to a 2019 nationwide survey of renters, homebuyers, and property owners by real estate company Zillow.
For Atencio, who left home at 16, his struggles with medical debt began with the heart attack. He was working at a gas station and living in Trinidad, a small city in southern Colorado near the New Mexico border.
Rushed to a local hospital, he underwent surgery. The bills, which topped $50,000, weren’t covered by his health plan because he’d unknowingly gone to an out-of-network provider, he said. “I fought it as hard as I could, but I couldn’t afford a lawyer. I was stuck.”
Atencio, who is transgender, has close-cropped dark hair and a large tattoo on his right forearm memorializing two friends who died in a car accident. Sitting on an aging couch in an apartment with bars on the windows, he’s philosophical about his long journey from that medical crisis through years of debt and housing insecurity. “We’ve pulled ourselves out of this,” he said. “But it took a toll.”
When Atencio’s credit score dipped close to 300, the lowest rating, there were few places to turn for help. Atencio’s relationship with his parents, who divorced when he was 2, had been strained for years. Atencio got married at 18, but he and his husband rarely had enough to make ends meet. “I remember thinking, ‘What kind of a start to my adult life is this?’”
They were ultimately taken in by Atencio’s mother-in-law. “If it wasn’t for her, we would have been homeless,” he said. But getting out from the debt was agonizing.
“You end up in this cycle,” he said. “You get into debt. Then you take out loans to try to pay off some of the debt. But then there’s all this interest.” With poor credit, Atencio relied at times on payday lenders, whose high interest rates can dramatically increase what borrowers owe. Many employers also check credit scores, which made it difficult for Atencio to land anything but low-wage jobs.
The job at the shelter was a step up, and Atencio this year got the apartment, which is reserved for single-parent families at risk of being homeless. (Atencio separated from his husband last year.)
Colorado’s Housing Challenges
Atencio’s housing struggles are hardly unique. Jim and Cindy Powers, who live in Greeley, a small city north of Denver, saw their own housing dreams collapse after Cindy was diagnosed with a life-threatening condition that required multiple surgeries and left the couple with more than $250,000 in medical debt.
When the Powers declared bankruptcy, the settlement protected their home. But their mortgage was sold, and the new lender rejected the payment plan. They lost the house.
Lindsey Vance, 40, who moved to Denver five years ago seeking more affordable housing than the Washington, D.C., area where she was from, still can’t buy a house because of medical debts. She and her husband have a six-figure income, but medical bills for even routine care that she’s struggled to pay since her 20s have depressed her credit score, making it difficult to get a loan. “We’re stuck in a holding pattern,” she said.
In and around Denver, elected officials, business leaders, and others have become increasingly concerned about medical debt as they look for ways to tackle what many see as a housing crisis.
“These things are deeply connected,” Denver City Council member Sarah Parady said. “As housing prices have gone up and up, I’ve seen more and more people, especially people with a medical issues and debts, lose housing security.” Parady, who ran for office last year to address housing affordability, is helping lead an effort to get the city to buy and retire medical debt for city residents.
Fueled by skyrocketing prices and rising interest rates, the cost of buying a home more than doubled in Denver from 2015 to 2022, according to one recent analysis. And with rents also surging, evictions are rocketing upward after slowing during the first two years of the pandemic.
Perhaps nowhere is Denver’s crisis more visible than on the streets. The city’s downtown is dotted with tents and encampments, including one that stretches over several blocks near the shelter and clinic where Atencio used to work. By one count, metro Denver’s homeless population increased nearly 50% from 2020 to 2023.
CEDP, which was founded to help residents with housing challenges sparked by the pandemic, this year joined other Colorado consumer and patient advocates to push the legislature for stronger protections for patients with medical debt.
And in June, Colorado enacted a trailblazing bill that prohibits medical debt from being included on residents’ credit reports or factored into their credit scores, a move that put the state at the forefront of efforts nationally to expand debt protections for patients.
A few other states are considering similar steps. And in Washington, D.C., consumer and patient advocates are pushing for federal action to limit medical bills on credit reports. In most states — including many with the highest rates of medical debt — patients still have no such protections.
For his part, Atencio is hoping the new apartment marks a turning point.
The home is modest — a small unit in an aging concrete tower. There’s a security guard by the front door and long, linoleum corridors painted institutional blue and brown.
Atencio’s family is settling in, along with four pet rats — Stitch, Cheese, Peach, and Bubbles — who live in a large cage in the living room. “This feels like freedom,” said Atencio.
He’s tried to give his children, who are 5 and 11, a sense of security: home-cooked meals and the space to play or hang out in their own bedrooms. Like parents everywhere, he frets over their screen time and rolls his eyes when they critique what’s for dinner. (They didn’t like the potatoes he put in a pot roast.)
They are all full-time students: Atencio, who left his job at the shelter, is working on a master’s in social work. His son just started kindergarten, and his daughter is in middle school. “I have big plans and big goals,” he said.
And with several thousand dollars of medical debt still to pay off, Atencio said he’s careful not to take his kids to an out-of-network hospital or physician. “I won’t make that mistake again,” he said.
About This Project
“Diagnosis: Debt” is a reporting partnership between KFF Health News and NPR exploring the scale, impact, and causes of medical debt in America.
The series draws on original polling by KFF, court records, federal data on hospital finances, contracts obtained through public records requests, data on international health systems, and a yearlong investigation into the financial assistance and collection policies of more than 500 hospitals across the country.
Additional research was conducted by the Urban Institute, which analyzed credit bureau and other demographic data on poverty, race, and health status for KFF Health News to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.
The JPMorgan Chase Institute analyzed records from a sampling of Chase credit card holders to look at how customers’ balances may be affected by major medical expenses. And the CED Project, a Denver nonprofit, worked with KFF Health News on a survey of its clients to explore links between medical debt and housing instability.
KFF Health News journalists worked with KFF public opinion researchers to design and analyze the “KFF Health Care Debt Survey.” The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.
Reporters from KFF Health News and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.
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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1 year 7 months ago
Health Care Costs, States, Colorado, Cost of Living, Diagnosis: Debt, Homeless, Investigation
KFF Health News' 'What the Health?': Welcome Back, Congress. Now Get to Work.
The Host
Julie Rovner
KFF Health News
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.
Congress returns from its August recess with a long list of things to do and not a lot of time to do them. The fiscal year ends Sept. 30, and it’s possible that lawmakers will fail to finish work not only on the annual appropriations bills, but also on any short-term spending bill to keep the government open.
Meanwhile, Medicare has announced the first 10 drugs whose prices will be negotiated under the Inflation Reduction Act of 2022. Exactly how the program will work remains a question, however. Even how the process will begin is uncertain, as drugmakers and other groups have filed lawsuits to stop it.
This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Alice Miranda Ollstein of Politico.
Panelists
Rachel Cohrs
Stat News
Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Alice Miranda Ollstein
Politico
Among the takeaways from this week’s episode:
- Hard-line Republicans are refusing to back even a temporary government spending bill, suggesting a government shutdown looms — with repercussions for health programs. While the Senate and House have come to intra-chamber agreements on subjects like community health center funding or even have passed spending bills, Congress as a whole has been unable to broker an overarching deal.
- A coalition of House Republicans is falsely claiming that global HIV/AIDS funding through PEPFAR promotes abortion and is battling efforts to extend the program’s funding. PEPFAR is a bipartisan effort spearheaded by then-President George W. Bush and credited with saving millions of lives.
- The PEPFAR fight underscores the dysfunction of the current Congress, which is struggling to fund even a highly regarded, lifesaving program. Another example is the months-long blockade of military promotions by a freshman Republican senator, Alabama’s Tommy Tuberville, a member of the Senate Armed Services Committee. His objections over an abortion-related Pentagon policy have placed him at odds with top military leaders, who recently warned that his heavy-handed approach is weakening military readiness.
- The Biden administration recently announced new staffing requirements for nursing homes, as a way to get more nurses into such facilities. But how long will compliance take, considering ongoing nursing shortages? And the drug industry is reacting to the news of which 10 drugs will be up first for Medicare negotiation, with much left to be sorted out.
- In abortion news, a Texas effort to block patients seeking abortions from using the state’s roads is spreading town to town — and, despite being dubiously enforceable, it could still have a chilling effect.
Also this week, Rovner interviews Meena Seshamani, who leads the federal Medicare program, about the plan to start negotiating drug prices.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: JAMA Health Forum’s “Health Systems and Social Services — A Bridge Too Far?” by Sherry Glied and Thomas D’Aunno.
Alice Miranda Ollstein: The Washington Post’s “Heat’s Hidden Risk,” by Shannon Osaka, Erin Patrick O’Connor, and John Muyskens.
Rachel Cohrs: The Wall Street Journal’s “How Novartis’s CEO Learned From His Mistakes and Got Help From an Unlikely Quarter,” by Jared S. Hopkins.
Joanne Kenen: Politico’s “How to Wage War on Conspiracy Theories,” by Joanne Kenen, and “Court Revives Doctors’ Lawsuit Saying FDA Overstepped Its Authority With Anti-Ivermectin Campaign,” by Kevin McGill.
Also mentioned in this week’s episode:
- The Washington Post’s “Highways Are the Next Antiabortion Target. One Texas Town Is Resisting,” by Caroline Kitchener.
- KFF Health News’ “Biden Administration Proposes New Standards to Boost Nursing Home Staffing,” by Jordan Rau.
- Stat’s “The Curious Case of J&J’s Stelara, The Unluckiest Drug on Medicare’s List,” by Rachel Cohrs.
Click to open the transcript
Transcript: Welcome Back, Congress. Now Get to Work.
[Editor’s note: This transcript, generated using transcription software, 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. 7, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Rachel Cohrs of Stat News.
Rachel Cohrs: Good morning.
Rovner: Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hi, everybody.
Rovner: And Alice Miranda Ollstein of Politico.
Alice Miranda Ollstein: Hello.
Rovner: Later in this episode, we’ll have an interview with Meena Seshamani, who runs the Medicare program for the federal government, with an update on the Medicare drug negotiation debate as, we’ll discuss, the first 10 drugs that will be subject to negotiation were announced last week. But first, this week’s news. So Labor Day is behind us, and Congress is back — sort of. The Senate is back. The House returns next week. And there are lots of questions to be answered this fall, starting with whether or not Congress can finish the annual spending bills before the start of fiscal 2024 on Oct. 1. Spoiler: They cannot. But there’s also a real question whether Congress can even pass a short-term bill to keep the government running while lawmakers continue to work on the rest of the appropriations. As of now, what do you guys think are the odds that we’re going to end up with some kind of government shutdown at the end of the month?
Ollstein: Well, it’s whether it happens at the end of the month or at the end of the year, really. Folks seem pretty convinced that it will happen at some point. It could be short-lived. But, yeah, like you said, you have some hard-line House Republicans who say they won’t support even a temporary stopgap bill without spending cuts, policy changes, without sort of extracting some of their demands from leadership. And you could work around that in the House by cobbling together a coalition of Republicans and Democrats. But that also puts [House Speaker Kevin] McCarthy’s leadership in jeopardy. And so, we’re having sort of the same dynamic play out that we saw earlier this year, trying to navigate between the hard-line House Republicans and, you know, the more vulnerable swing districts’ members. So it’s … tough.
Rovner: Yeah, it’s the Republicans from districts that [President Joe] Biden won … basically.
Ollstein: Yeah. And so you have this weird game of chicken right now where both the House and Senate are trying to pass whatever they can to give themselves more leverage in the ultimate House-Senate negotiations. They think, OK, if we pass five bills and they only pass one, you know, then we have the upper hand. So we’ll see where that goes.
Rovner: It’s funny, because the Senate has been a well-oiled machine this year on the spending bills, which is unusual. I was about to say I will point out that there are two women: the chairman and ranking member. But that’s actually also true in the House. We do have women running the appropriations process this year. But I was amused that Kevin McCarthy, sometime during August, a couple of weeks ago, said, you know, very confidently, well, we’ll pass a short-term spending bill. You know, we won’t let the government shut down. And by the next day, the hard-line Republicans, the right wing, were saying, yeah, no you won’t. You’re going to have to deal with us first. And, obviously, there’s lots of health stuff that’s going to get caught up in that. The end of the fiscal year also marks the end of funding authority for a number of prominent programs. This is not the same as the appropriations programs whose authorizations lapse can continue, although things can get complicated. PEPFAR, the two-decade-old bipartisan program that provides AIDS and HIV prevention and treatment around the world, is one of those programs that, at least as of now, looks pretty stuck. Alice, is there any movement on this? We’ve talked about it before.
Ollstein: Not yet. So the latest we know, and we got this last night, is that [Foreign Relations Committee] Chairman [Bob] Menendez in the Senate is floating a new compromise. Basically, supporters of PEPFAR have been pushing for the full five-year standard reauthorization. And a coalition of House Republicans who are claiming that PEPFAR money is going to abortion say they want no reauthorization at all. They just want the program to sort of limp along through appropriations. So between five years and zero, Menendez is now suggesting a three-year extension. There is a huge desire not to just have the one-year funding patch because that would kick all of this into the heat of the 2024 season. And if you think the debate is ugly now over abortion and federal spending, just wait until 2024.
Kenen: I mean, this … [unintelligible] money … it’s saved tens of millions of lives — and with bipartisan support in the past.
Rovner: It was a Republican initiative.
Kenen: Right. It was President Bush, George the second.
Rovner: George W. Bush. Yeah.
Kenen: And they’re not saying they’re actually going out and using the AIDS dollars to conduct, to actually do abortions. They’re saying that there’s, you know, they’re in the world of abortion and they’re promoting abortion, etc., etc. So the conversation gets really, really, really, really muddled. Under U.S. law, they cannot use U.S. dollars for abortion under the Hyde Amendment, you know, all sorts of other foreign policy rules. So it’s hard to overstate how important this program has been, particularly in Africa. It has saved millions and millions of lives. And I think Alice might have broken the story originally, but it got caught up in abortion politics, and it caught people by surprise. This is not something … everything in Washington gets caught up in politics, except this! So I think it’s been quite shocking to people. And it’s, I mean — life-and-death sounds like a, you know, it’s a Washington cliché — this is life-and-death.
Ollstein: Yeah, absolutely. And, you know, even though the program won’t shut down if they don’t manage to get a reauthorization through, you know, I talked to people who run PEPFAR services in other countries, and they said that, you know, having this year-to-year funding and instability and uncertainty — you know, they won’t be able to hire, they won’t be able to do long-term planning. They said this will really undermine the goal to eliminate HIV transmission by 2030.
Cohrs: Oh, I actually did just want to jump in about another Sept. 30 deadline, because there was a big development this week. I know we were just talking about long-term planning. There is funding for community health centers that’s expiring at the end of September as well. DSH cuts could go into effect for hospitals. We do this routine every so often, but the House is actually more in step than the Senate on this issue; they released — at least Republicans released — a draft legislation, where all three committees of jurisdiction are in agreement about how to proceed. There are some transparency measures in there.
Rovner: The three committees in the House.
Cohrs: In the House. Yes, yes, we’re talking about the House. Yeah. So, they have reconciled their differences here and are hoping to go to the floor this month. So, I think they are out of the gate first, certainly with some sort of longer-term solution here. Again, could get punted. But I think it is a pretty big development when we’re talking about these extenders that the industry cares about very much.
Kenen: Congress is so polarized that it can’t even do the things that it agrees on. And we have seen this before where CHIP [Children’s Health Insurance Program] got caught up a few years ago. Community health clinics have gotten caught right in that same bill, right? But, you know, we really have this situation where it’s so dysfunctional they can’t even move fully on things that everybody likes. And community health centers date back to the early ’60s. However, they got a really big expansion, again, under second President Bush. And they’re popular, and they serve a need, and everybody likes them.
Rovner: They got a bigger expansion under the Affordable Care Act.
Kenen: Right, but they, you know — but I think that the Bush years was like the biggest in many years. And then they got more. So again, I mean, are they going to shut their doors? No. Is it going to be a mess? It is already a mess. They can’t — they don’t know what’s coming next. That’s no way to run a railroad or a health clinic.
Rovner: All right, well, one more while we’re on the subject of abortion-related delays: Alabama Sen. Tommy Tuberville is still blocking Senate approval of routine military promotions to protest the Biden administration’s policy of allowing funding for servicewomen and military dependents to travel for abortions if they’re posted to states where it’s banned. Now, the secretaries of the Army, Navy, and Air Force are joining together to warn that Tuberville’s hold is threatening military readiness. Tuberville apparently went on Fox News last night and said he’s got more people who are coming to support him. Is there any end to this standoff in sight? I mean, people seem to be getting kind of upset about it. It’s been going on since, what, February?
Ollstein: Yeah, there is not yet an end in sight. So far, all of the attempts to pressure Tuberville to back down have only hardened his resolve, it seems, you know, and he’s gone beyond sort of his original statement of, you know, all of this is just to get rid of this policy that doesn’t pay for abortions; it just allows people to travel out of state if they’re stationed — they don’t get to choose where they’re stationed — if they’re stationed somewhere where abortion is not legal or accessible. And so now he’s making claims about other things in the military he considers too woke. He’s criticized some of these individual nominees themselves that he’s blocking, which was not sort of part of the original stand he took. And so, it’s tough, and there isn’t enough floor time to move all of these and go around him. And so this pressure campaign doesn’t seem to be really making any headway. So I don’t really see how this gets resolved at this point.
Kenen: Except that other Republicans are getting a little bit more public. I mean, they were sort of letting him run out for a while. And there’s more Republicans who are clearly getting enough of this. But I mean, unless McConnell can really get him to move — and we don’t know what’s gone on behind closed doors, but we’re certainly not seeing any sign of movement. In fact, as Alice said, he’s digging in more. I mean, like, Marines and woke are not the two words you usually hear in one sentence, but in his worldview, they are. So, I think it’s unprecedented. I mean, I don’t think anyone’s ever done this. It’s not like one or two people. It’s like the entire U.S. military command can’t move ahead.
Rovner: I’ve been doing this a very long time, and I don’t remember anything quite like this. Well, the one thing that we do expect to happen this fall is legislation on — and Rachel, you were referring to this already — sort of health care price transparency and PBMs, the pharmacy benefit managers. Where are we with that? They were supposed to work on it over the August break. Did they?
Cohrs: They were supposed to work on it. The House was clearly working on it and reconciling some of their differences. They’re planning to introduce legislative text on Friday. So, I think Democrats aren’t on board yet, so things could change from the draft they had been circulating early this week. But again, Republicans don’t really need Democrats to move forward, at least in the House. The Senate has been pretty quiet so far. Not to say that no work has gone on, but they certainly weren’t ready for the rollout in the same way that the House was. You know, I think there are still some big questions about, you know, what they’re planning to accomplish with insulin policy, how they’re planning to fit together this jigsaw puzzle of PBM transparency and reforms that have come out of different committees. And I think it’ll come down to [Senate Majority Leader] Sen. Schumer making some tough choices. And from my understanding, that hasn’t quite happened yet. But if the actual showdown happens November, December, they still have some time.
Rovner: Yeah. Now they’re not going out early. They’re clearly going to be fighting over the appropriation. So, the legislative committees have plenty of time to work on these other things. All right. Well, let’s turn to Medicaid for a moment. The quote-unquote “unwinding” continues as states move to redetermine who remains eligible for the program and who doesn’t following the pandemic pause. As predicted, it’s been a bit of a bumpy road. And now it seems a bunch of states have been incorrectly dropping children from Medicaid coverage because their parents are no longer eligible. That’s a problem because nationwide, income limits for children’s eligibility is higher than parents’. In some states, it is much higher. I remember after Hurricane Katrina, in Louisiana, parents were only eligible if they earned 15% of poverty. Somebody said 50, and the Medicaid director said, “No, 15, one-five.” Whereas kids are eligible to, I believe it’s 200% of poverty. And I think that’s a national level.
Kenen: Now, in some states it’s higher.
Rovner: Yes. But I say this is happening in a bunch of states because federal government won’t tell us how many or which ones. We do know it’s more than a dozen, but this is the second time the administration has admonished states for wrongly canceling Medicaid coverage. And they wouldn’t say which states were involved at that time either. Is this an effort to keep this as apolitical as possible, given that the states most likely to be doing this are red states who are trying to remove ineligible people from Medicaid as fast as they can, that they’re trying to sort of keep this from becoming a Republican versus Democrat thing.
Ollstein: It seems like, from what we’re hearing, that the administration is really wary of publicly picking a fight with these states. They want the states to work with them. And so, even if the states are going about this in a way they think is totally wrong, they don’t want to just put them publicly on blast, because they think that’ll make them, again, double down and refuse to work with the government at all. And so, they’re trying to maintain some veneer of cooperation. But at the same time, you’re having, you know, millions of people, including children, falling through the cracks. And so, you know, we have sort of this sternly-worded-letter approach and we’ll see if that accomplishes anything, and if not, you know, what measures can be taken. You know, the administration also created a way for states to hit pause on the process and take a little more time and do a little more verification of people’s eligibility. And some — a couple states — have taken advantage of that, and it’s been successful in, you know, having fewer people dropped for paperwork reasons, but it’s not really happening in the states where it sort of most needs to happen, according to experts.
Rovner: The administration has had fingers pointed at it, too, because apparently it approved some of these plans from the states that were going to look at total family income without realizing that, oh, that meant that kids who are still eligible could end up losing coverage because their parents are no longer eligible.
Kenen: Right. And I also read something yesterday that in some cases it’s sort of a technical issue rather than a “how much outreach and what your intentions are,” that it’s a programing issue, which is related to what Julie just said about the plan. So, it’s not that these states set about to drop these kids, and there may be some kind of goodwill to fix it, in which case you don’t want to get in — and I don’t know that it’s 100% red states either. So —
Rovner: No, that’s clear. We assume, because they’re the ones going fastest, but we do not know.
Kenen: Right, so that there seems to be some kind of — the way it was set up, technically, that can be remedied. And if it’s a technical fix as opposed to an ideological fight, you don’t really want to — you want to figure out how to reprogram the computer or whatever it is they have to do and then go back and catch the people that were lost. So, they’ve been pretty low-key about politicizing rewinding in general. But on the kids, I think they’re going to be even more — CHIP passed, another thing with bipartisan support that’s a mess. I mean, it seems to be the theme of the day. But, you know, CHIP was created on a bipartisan basis, and it’s always been sustained on a bipartisan basis. So, I think that the issue, I don’t know how technically easy it is to fix, but there’s a big difference in how the administration goes after someone that’s intentionally doing something versus someone who wrote their computer programmer set something up wrong.
Rovner: Well, we will definitely keep on this one.
Kenen: But it’s a big mess. It’s a lot of kids.
Rovner: It is a big mess. And let’s turn to the thing that is not bipartisan in Congress, and that is —
Kenen: That’ll be a bigger mess.
Rovner: — Medicare drug negotiations. Yes. While we were away, the federal government released its much-anticipated list of the 10 brand-name drugs that will be the first tranche up for potential price negotiation. I say potential, because the companies have the option of negotiating or not — sort of — and because there are now, I think, nine lawsuits challenging the entire program. My interview with Medicare administrator Meena Seshamani will get into the nuts and bolts of how the negotiation program is supposed to work. But Rachel, tell us a little bit about the drugs on the list and how their makers are trying to cancel this entire enterprise before it even begins.
Cohrs: Sure. So, a lot of these drugs that we’re seeing on the list are blood thinners. Some are diabetes medications. There are drugs for heart failure, rheumatoid arthritis, Crohn’s disease, and there’s also a cancer treatment, too. But I think overall, the drugs were chosen because they have high cost to Medicare. And it was —
Rovner: So that either could mean a lot of people use an inexpensive drug —
Cohrs: Yes.
Rovner: — or a few people use a very expensive drug.
Cohrs: Correct. And it was Wall Street’s favorite parlor game to try to guess what drugs were going to be on this list of 10 drugs that are going to be the guinea pigs to go through this program for the very first time. But it was interesting, because there were a few surprises. Medicare officials were using newer data than Wall Street analysts had access to. So, there were a couple drugs, especially further down on the list, that people used more in the period CMS [Centers for Medicare & Medicaid Services] was studying than had been used previously. So, we saw a couple very interesting instances of a drug being chosen for the list, even though it just kind of fell through the cracks. It was J&J’s [Johnson & Johnson’s] Stelara. It’s a Crohn’s disease treatment, and it does have competition coming in the market soon, but just because of a fluke of kind of when it was approved by the FDA, it just missed cutoffs for some of these exemptions and is now subject to some pretty significant discounts through the program.
Rovner: We’ll link to your very sad story about Stelara.
Cohrs: Sad for the company, but not sad for the patients who will hopefully be paying less for this medication. And there’s also the case of Astellas [Pharma Inc.], which makes a prostate cancer drug that’s very expensive. A lot of people expected that to be selected, but actually wasn’t. And Astellas had sued the Biden administration already before the list came out and then had to withdraw their lawsuit yesterday because their argument that they were going to be harmed by this legislation was made much weaker by the fact that they weren’t selected for this first year of the program. So, who knows? They could dust off their arguments a year from now or two years from now. But it was interesting to see kind of some of these surprises on the list. Again, there are still several, like you mentioned, outstanding lawsuits in several different jurisdictions. I think the main one that we’re watching is by the [U.S.] Chamber of Commerce, which requested a preliminary injunction by the end of this month. So, we’ll see if that comes through. But it is a very long road to 2026. There might be a new administration by then. So, I think there are still a lot of questions about whether this reaches the finish line. But I think it’s a very important step for CMS to get this list out there in the world.
Rovner: So, I spent some time digging in my notes from earlier years, and I dug up notes from an interview I did on Aug. 26 with a spokesperson from the drug industry about how the Medicare drug benefit, quote, “impact the ability of companies to research new medicines. And if that happens, the elderly would be the ones hurt the most.” That quote, by the way, was from Aug. 26 of 1987. Some things truly never change. But is this maybe, possibly, the beginning of the end of drugmakers being able to charge whatever they want in the United States? Because it’s the only country where they can.
Cohrs: Oh, they can still charge whatever they want. This law doesn’t change that. It just changes the fact that Medicare won’t be paying whatever drugmakers happen to charge for an unlimited amount of time. Like, they can still charge whatever they want to Medicare for as long as they can get on the market before they’re selected for this negotiation program. But certainly there could be significant cost — significant savings to Medicare, even if those prices are high. And it’s just kind of a measure that forces price reductions, even if the generic or biosimilar market isn’t functioning to lower those prices through competition.
Kenen: Right. And it’s only Medicare. So, people who are not on Medicare — insurance companies also negotiate prices, but they’re not the government. It’s different. But I mean, these drugs are not going to start being, you know, three bucks.
Rovner: But they may stop being 300,000.
Kenen: Well, we don’t know, because there are some people who think that if Medicare is paying less, they’re going to charge everybody else more. We just don’t know. We don’t know what their behavior is going to be. But no, this does not solve the question of affordability of medication in the United States.
Rovner: The drug companies certainly think it’s the camel’s nose under the tent.
Kenen: They have some medicine for camels’ noses that they can charge a lot of money for, I’m sure.
Rovner: I bet they do. While we are on the subject of things that I have covered since the 1980s, last week the Biden administration finally put out its regulation requiring that nursing homes be staffed 24/7/365 by, you know, an actual nurse. One of the first big reconciliation bills I covered was in 1987 — that was a big year for health policy — and it completely overhauled federal regulation of nursing homes, except for mandating staffing standards, because the nursing homes said they couldn’t afford it. Basically, that same fight has been going on ever since. Except now the industry also says there aren’t enough nurses to hire, even if they could afford it. Yet patient advocates say these admittedly low staffing ratios that the Biden administration has put out are still not enough. So, what happens now? Is this going to be like the prescription drug industry, where they’re going to try to sue their way out of it? Or is it going to be more like the hospital transparency, where they’re just not going to do it and say, “Come and get us”?
Kenen: My suspicion is litigation, but it’s too soon to know. I assume that either one of the nursing home chains — because there are some very big corporations that own a lot of nursing homes — there are several nursing home trade industry groups, for-profit, nonprofit. Does one owner — is in an area where there is a workforce shortage, because that does exist. I mean, I’d be surprised if we don’t see some litigation, because when don’t we see that? I mean, it’s rare. That’s the norm in health care, is somebody sues. Some of the workforce issues are real, but also this proposal doesn’t go into effect tomorrow. It’s not like — but I mean, there are issues of the nursing workforce. There are issues about not just the number of nurses, but do we have them in the right places doing the right jobs? It’s not just RNs [registered nurses]; there are also shortages of other direct care workers. I did a story a few months ago on this, and there are actually nursing homes that have closed entire wings because they don’t have enough staff, and those are some of the nonprofits. There are nursing issues.
Rovner: And a lot of nursing home staff got sick at the beginning of the covid pandemic, and many of them died before there were good treatments. I mean, it’s always been a very hard and not very well-paid job to care for people in nursing homes. And then it became a not very pleasant, not very well-paid, and very deadly job. So I don’t think that’s probably helping the recruitment of people to work in nursing.
Kenen: Right, but the issue — I think a lot of people, when you have your first family experience with a nursing home or, you know, or those of us reporters who hadn’t been familiar with them until we went and did some stories on them, I think people are surprised at how little nursing there actually is. It’s nurses’ aides; it’s, you know, what they used to call licensed practical nurses or nursing assistants; and CNAs, certified nursing assistants. They’re various; different states have different names. But these are not four-year RNs. The amount of actual nursing — forget doctors. I mean, there’s just not a lot of RNs in nursing homes. There’s not a lot of doctors who spend time in nursing homes. A lot of the care is done through people with less training. So, this is trying to get more nurses in nursing homes. And there’s been a lot of stories about inadequate care. KFF Health News — I think it was Jordan Rau who did them. There have been some good stories about particularly nights and weekends, just really nobody there. These are fragile people. And they wouldn’t be in a nursing home if they weren’t fragile people. There are a lot of horror stories. At the same time, there are some legitimate — How fast can you do this? And how well can you do it? And can you do it across the country? I mean, it’s going to take some working out, but I don’t think anybody thinks that nursing home care in this country is, you know, a paragon of what we want our elders to experience.
Rovner: And the nursing home industry points out, truthfully, that most nursing home payments now come from Medicaid, because even people who start out being able to afford it themselves often run out of money and then they end up — then they qualify for Medicaid. And Medicaid in many states doesn’t pay very much, doesn’t pay nursing homes very much. So it’s hard for these companies. We’re not even talking about the private equity companies. A lot of nursing homes operate on the financial edge. I mean, there are —our long-term care policy in this country is, you know, just: What happens, happens, and we’ll worry about it later. And this has been going on for 50 years. And now we have baby boomers retiring and getting older and needing nursing home care. And at some point, this is all going to come to a head. All right. Well, let us turn to abortion. This week marks the second anniversary of the Texas abortion ban, the so-called heartbeat bill, that bans most abortion and lets individuals sue other individuals for helping anyone getting an abortion, which the Supreme Court, if you’ll recall, allowed to take effect months before it formally overturned Roe v. Wade. And, I guess not surprisingly, Texas is still in the news about abortion. This time. The same people who brought us Texas SB 8, which is the heartbeat bill, are going town by town and trying to pass ordinances that make it illegal to use roads within that town’s borders to help anyone obtain an abortion. They’re calling it abortion “trafficking.” Now, it’s not only not clear to me whether a local ordinance can even impact a state or an interstate highway, which is what these laws are mostly aimed at; but how on earth would you enforce something like this, even if you want to?
Ollstein: So, my impression is that they do not want to. These are not meant to be practical. They are not meant to be enforced, because how would you do it other than implementing a very totalitarian checkpoint system? This is meant to —
Rovner: Yes, have you been drinking and are you on your way to get an abortion?
Ollstein: Right. Right, right, right. So, it seems like the main purpose is to have a chilling effect, which it very well could have, even if it doesn’t stand up in court. You know, you also have this situation that we’ve had play out in other ways, where people are challenging laws in courts for having a chilling effect, and courts are saying, look, you have to wait till you actually get prosecuted and challenge it, you know, do an as-applied challenge. If you can’t challenge unless there’s a prosecution but there’s no prosecutions, then you sort of just have it hanging over your head like a cloud.
Kenen: Like Alice said, there’s no way you could do this. Like, what do you do, stop every car and give every person a pregnancy test? Are you going to, like, have, you know, ultrasounds on the E-ZPass monitors? Like, you go through it, it checks your uterus. So, I mean, it’s just not — you can’t do this. But I think one of the things that was really interesting in one of the stories I read about it, I think it was in The Washington Post, was that when they interviewed people about it, they thought it was trafficking, like really trafficking, that there were pregnant woman being kidnapped and forced to have an abortion. So even if you’re pro-choice, you might say, “Oh, I’m against abortion trafficking. I mean, I don’t want anyone to be forced to have an abortion.” You know, so, it’s — the wording and the whole design of it is, they know what they’re doing. I mean, they want to create this confusion. They want to create a disincentive. There’s no way — you know, radar guns? I mean, it’s just, there’s no way of doing this. But it is part of the effort to clamp down even further on a state that has already really, really, really clamped down.
Rovner: Although, I mean, if one could sue and if one could then know about something that’s happening and then you could presumably take the person to court and say, I know you were pregnant and now you’re not, and somebody took you in a car to New Mexico or whatever …
Kenen: You can’t even prove — how do you prove that it wasn’t a miscarriage?
Rovner: That’s —
Kenen: Right? I mean …
Rovner: I’m not saying — I’m not talking about the burden of proof. I’m just saying in theory, somebody could try to have a case here. I mean, but we certainly know that Texas has done a very good job creating a chilling effect, because we still have this lawsuit from the women who were not seeking abortions, who had pregnancy complications and were unable to get health-saving and, in some cases, lifesaving care promptly. And that’s still being litigated. But meanwhile, we have, you know, just today a study out from the Guttmacher Institute that showed that despite how well these states that are banning abortion have done in banning abortion, there were presumably more abortions in the first half of 2023 than there were before these bans took effect, because women from ban states were going to states where it is not banned. And there has been, ironically, better access in those states where it is not banned. I can’t imagine that this is going to please the anti-abortion community. One would think it would make them double down, wouldn’t it?
Ollstein: We know that people are leaving their states to obtain an abortion. We also know that that’s not an option for a lot of people, and not just because a lot of people can’t afford it or they can’t take time off work, they can’t get child care — tons of reasons why somebody might not be able to travel out of state. They have a disability, they’re undocumented. We also have — it’s become easier and easier and easier to obtain abortion pills online through, you know, a variety of ways: individual doctors in more progressive states, big online pharmacies are engaged in this, overseas activist groups are engaged in this. And so, you know, that’s also become an option for a lot of people. And anti-abortion groups know that those are the two main methods. People are still continuing to have abortions. And so, they’re continuing to just throw out different ways to try to either, you know, deter people or actually block them from either of those paths.
Rovner: This fight will also continue on. So, that is this week’s news. Now we will play my interview with Meena Seshamani, and then we will come back and do our extra credits.
Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.
I am pleased to welcome back to the podcast Dr. Meena Seshamani, deputy administrator and director of the Center for Medicare at the Centers for Medicare & Medicaid Services. Meena was with us to talk generally about Medicare’s new prescription drug negotiation program earlier this summer. But now that the first 10 drugs subject to negotiation have been announced, we’re pleased to have her back. Welcome.
Meena Seshamani: Thank you for having me.
Rovner: So, remind our listeners, why hasn’t Medicare been able to negotiate drug prices until now — they negotiate prices of everything else — and what changed to make that happen?
Seshamani: That’s right. It was because of the Medicare law that Medicare did not have the ability to negotiate drugs. And thanks to the new drug law, the Inflation Reduction Act, now Medicare has the ability to negotiate the prices of the highest-cost drugs that don’t have competition. And that is part of the announcement that we had on what the first 10 drugs are that have been selected.
Rovner: So, as you say, last week, for the first time and in time for the Sept. 1 deadline, Medicare announced the list of the first 10 drugs that will be part of the first round of price negotiations. Why these 10 specifically? I imagine it’s not a coincidence that the list includes some of the drugs whose ads we see the most often on TV: drugs like Eliquis, Xarelto, and Jardiance, which I of course know how to pronounce because I see the ads all the time.
Seshamani: Well, the process of selection really was laid out in the drug law and also through the guidance that we put out that we had incorporated everybody’s comment for. So, what we did is we started with the, you know, over 7,500 drugs that are covered in the Part D Medicare prescription drug program. From there, we picked those drugs that had been on the market for seven years for a drug product or 11 years for a larger molecule or biologic product that did not have competition. And then from there, there are various exemptions and exclusions that, again, are laid out in the law: for example, drugs that have low Medicare spend, of less than $200 million; drugs that are plasma-derived products; certain orphan drugs. An orphan drug is a drug that is indicated for a rarer disease. So that, again, those specific criteria are laid out in the law and in our guidance. And then there were opportunities for manufacturers to apply, for example, for a small biotech exemption; if their drug was, you know, 80% of their, you know, Medicare Part D revenue, they could say, “Hey, I’m a small biotech.” Again, a lot of these criteria were laid out in the law. Or for a manufacturer of a biosimilar, which is kind of like a generic drug for one of these biologic drugs, they could say, “Hey, we have a biosimilar that’s going to be coming on the market, has a high likelihood of coming on the market, so you should delay negotiating” the brand, if you will, drug. So, again, all of these steps were laid out in the drug law, and those are the steps and criteria that we followed that came to that list of 10 drugs that we published.
Rovner: I did see the makers of one drug — and forgive me, I can’t remember which one it was — saying, “But our drug isn’t that expensive.” On the other hand, their drug is used by a lot of people on Medicare. So, it’s not just the list price of the drug, right? It’s how much it costs Medicare overall.
Seshamani: That’s right. The list is made up of those drugs that have the highest gross total cost to the program — so, price per unit times units of volume that is used.
Rovner: So, how does this negotiation process work? What happens now? Now we have this list of 10 drugs.
Seshamani: Yeah, a lot of this is also laid out in the law, and then we fleshed out further in our guidance. So, from the list of 10 drugs, on Oct. 1, manufacturers now have to decide if they want to participate in the negotiation program. It is a voluntary program. It is our hope that they will come to the table and want to negotiate, because I think we all have shared goals of improving access and affordability and really driving innovation for the cures and therapies that people need. So, Oct. 1, they sign agreements for the negotiation program if they decide to participate. And Oct. 2 is the deadline for gathering data. We put out what’s called an information collection request to say, this is the kind of data we’re thinking about collecting. We got lots of comments and incorporated that. So, that provides the framework for the data that we’re requesting both from the manufacturer of the selected drug, but also, there are aspects open to the public on, you know, how the drug benefits populations, for example. So that’s Oct. 2. Then we’re going to have patient-focused listening sessions, a session for each drug, for patients, their caregivers, you know, other advocates, to be able to share what they see as the benefits of the drugs that are selected. And, we will have meetings with each of the manufacturers. All of that information will come together in an initial offer that CMS will make Feb. 1, 2024, and that is a date that is stipulated in the law. The manufacturer then has about 30 days to evaluate that. If they like that offer, they can agree. If they want, they can make a counteroffer. From that counteroffer, CMS has the ability to agree or to say, “You know, we don’t agree, so let’s now have a series of negotiation meetings.” There can be up to three negotiation meetings that provides that back-and-forth, ultimately leading to an agreed-upon what’s called maximum fair price in the law. And those maximum fair prices are published by Sept. 1, 2024. Again, that Sept. 1 is stipulated in the law. And also as part of this process, CMS will publish a narrative about that negotiation process — you know, the data that was received, you know, the back-and-forth, and also we’ll publish ultimately the maximum fair prices that are agreed to.
Rovner: And does that maximum fair price just apply to Medicare?
Seshamani: The maximum fair price just applies to Medicare. The information will be available. I mean, we don’t have any authority. You know, the commercial sector, they do their own negotiations, and they will continue to do so. But part of this is an opportunity to really further the conversation about how drugs impact the lives of people. We have an opportunity now with some drugs that have been on the market for quite a while, right? Minimum of seven years or 11 years, to see how these drugs work in the real world, in people’s communities, so that we can incorporate that into what it is that we need and want for people to be healthy, to stay out of the hospital, to live meaningful lives. So it’s really an opportunity to further that conversation. And a lot of that data, a lot of those listening sessions, that will all go into our negotiation process and will be part of the narrative that we publish.
Rovner: And what happens if the drug company says either we don’t want to negotiate or we don’t like our final offer? If they say they don’t want to play, what happens?
Seshamani: Julie, I will say again, to start with, we are hopeful that the drug companies will come forward and will want to negotiate because, again, through many conversations that we have had, we do have shared goals of access and affordability and really driving innovation and procures and therapies that people need. And it is a choice for drug companies if they want to participate or not, as stipulated in the law. If a drug company decides not to sign, you know, the negotiation agreement, not to participate in negotiation, then we would refer them to the Department of Treasury for an excise tax. That excise tax is also described in the law. If a drug company has this excise tax applied, they can get out of paying the excise tax. If, No. 1, they decide to come to the table and negotiate, or No. 2, if they exit the Medicare and Medicaid market. So those are kind of their off-ramps, if you will, for that excise tax.
Rovner: So they don’t have to participate in the negotiation, but they also don’t have to participate in Medicare and Medicaid.
Seshamani: Correct.
Rovner: So I saw a lot of complaining last week with the first group of drugs that this is really only going to benefit the people on Medicare who take those drugs. But, in fact, if there really is a lot of money saved, the benefits could go well beyond this, right?
Seshamani: Yeah, I think two points. So, yes, this negotiation is for, you know, some of the highest-cost drugs to the Medicare program that don’t have competition. And the negotiated drug prices apply to the Medicare program. However, as we talked about, this really drives a conversation around drugs and really grounding this negotiation process in the clinical benefit that a drug provides. Considering things like if a drug is easier for someone to take and it’s easier for a caregiver, that can have tangible improvements to the health of the person they’re caring for, right? And I think we have that opportunity to really drive the conversation. And as we know in many aspects of health care, people look to Medicare to see what Medicare is doing. And also, the transparency around providing that narrative of the negotiation, publishing the maximum fair prices that are agreed to. That’s all data that anybody can use as they would like. And I think the second piece that’s important to remember is that negotiation is one very important piece of a very big change to Medicare prescription drug coverage. You know, alongside the $2,000 out-of-pocket tab that’s going to go into effect in 2025, the no-cost vaccines, $35 copay cap for insulin that have already gone into effect. So, really, it is part of a larger sea change in Medicare drug coverage that will help millions of people and their families. You know, I did a roundtable with seniors as we were rolling out the insulin copay cap. And one woman was telling me that she was providing money to her brother every month so that he could pay for his insulin on Medicare. So, really, I mean, this has tremendous impact not just for people on Medicare, but their families, their communities, and really furthers the conversation for the entire system.
Rovner: I was actually thinking of more nitty-gritty money, which is if you save money for Medicare, premiums will be lower for people who are getting drug coverage, and taxpayers will save money, too, right? I mean, this is not just for these people and their families.
Seshamani: Our priority is being able to reach agreement on a fair price for the people who rely on these medications for their lives and the American taxpayer in the Medicare program.
Rovner: I know you can’t comment on lawsuits, and there are many lawsuits already challenging this. But the drug companies, one of their major arguments is that if you limit what they can charge for their drugs, particularly in the United States, the last country where they can charge whatever they want for their drugs, they will not be able to afford to keep the pipeline going to discover more new, important drugs. This is an argument they’ve been making since, I told somebody earlier, since I covered this in the late 1980s. What is your response just to that argument?
Seshamani: Well, I think there were several articles, many articles were written about this on the day that the 10 selected drugs were published. They were published before the stock market opened. And there really was no impact on the stocks of the companies. There were many financial pieces written about this. So I think that is one indication of the fact that the pharmaceutical industry is strong, it is thriving, and it is designed to innovate. And what we’re hoping to do through this negotiation program is really reward the kinds of innovations that we all need, the cures and therapies that people need. Recently, the venture fund that backed Moderna invested in a new startup for small molecules. Bayer has recently invested a billion dollars in the U.S. So you see, the industry very much is thriving. That is what the stock market response also shows. And it’s also the way that we are approaching negotiation to make sure that we’re rewarding the kinds of innovations that people need.
Rovner: Well, Meena Seshamani, thank you so much. I hope we can come back to you as this negotiation process for the first time proceeds.
Seshamani: Absolutely. Thanks again, Julie.
Rovner: OK. We are back, and 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. Alice, why don’t you go first this week?
Ollstein: Yeah, I picked a very sad story from The Washington Post about how people who have schizophrenia are a lot more vulnerable to extreme heat. And it’s rare to find one of these health care stories where you’re just astonished. You know, I had no idea about this. You know, it really walks through not only are people more vulnerable for mental health reasons, you know, it profiles this terrible story of a guy in Phoenix who wandered off into the desert and died because he was experiencing paranoid delusions. But also, just physically, people with schizophrenia have difficulty regulating their body temperature. A lot of medications people take make people more dehydrated, less able to cope. And just an astonishingly high percentage of people hospitalized and killed by extreme heat have these mental illnesses. Of course, they’re also more likely to have housing instability or be out on the street. So just a fascinating piece, and I hope it spurs cities to think of ways to address it. One other small thing I want to compliment is it just, technically, on this article online, they have a little widget where you can convert all of the temperatures cited in the lengthy story from Fahrenheit to Celsius. And I just really appreciated that for allowing, you know, no matter where you live, you sort of get what these high temperatures mean.
Rovner: Yeah, graphics can be really helpful sometimes. Rachel.
Cohrs: Yeah. So I chose a story in The Wall Street Journal and the headline is “How Novartis’s CEO Learned From His Mistakes and Got Help From an Unlikely Quarter,” by Jared S. Hopkins. And I think it was a really interesting and rare look inside one of these pharmaceutical companies. And Novartis hired a Wall Street analyst, Ronny Gal, to help advise them. And I think I had read his analysis before he crossed over to Novartis. So I think it was interesting to just hear how that has integrated into Novartis’ strategy and just how they’re changing their business. But I think as we’re, you know, having these conversations about drug pricing and how strategies are changing due to some of these policies, it is helpful to look at who these executives are listening to and what they’re prioritizing, whose voices in this decision-making process that really has impacts for so many people who are waiting for treatments. And I think there are tough choices that are made all the time. So I just thought it was very illuminating and helpful as we’re talking about how medicines get made in D.C.
Rovner: Yeah, maybe there will be a little more transparency to actually how the drug industry works. We will see. Joanne.
Kenen: With Julie’s permission, I have two that are both short and related. I wrote a piece for Politico Nightly called “How to Wage War on Conspiracy Theories,” and I liked it because it really linked political trends and disinformation and attempts to debunk, with very parallel things going on in the world of health care and efforts to the motivations and efforts to sow trust and what we do and do not know about how to debunk, which we’re not very good at yet. And then the classic example, of course, is the related AP story, which has a very long headline, so bear with me. It’s by Kevin McGill: “Court Revives Doctors’ Lawsuit Saying FDA Overstepped Its Authority With Anti-Ivermectin Campaign.” And, basically, it’s that the 5th Circuit, a conservative court that we’ve talked about before, is saying that the FDA is allowed to inform doctors, but it can’t advise doctors. And I’m not really sure what the difference is there, because if the FDA is informing doctors that ivermectin, we now know, does not work against covid, and it can in fact harm people, there’s ample data, that the FDA is not allowed to tell doctors not to use it. So the ivermectin campaign is a form of disinformation, or misinformation, whatever you want to call it, that at the very beginning, people had, you know, there were some test-tube experiments. We had nothing else. You can sort of see why people wanted … might have wanted to try it. But we have lots and lots and lots of good solid clinical research and human beings and, no, it does not cure covid. It does not improve covid. And it can be damaging. It’s for parasites, not viruses.
Rovner: It can cure worms. Well, I’m going to channel my inner Margot Sanger-Katz this week and choose a story from a medical journal, in this case the Journal of the American Medical Association. Its lead author is Sherry Glied, who’s dean of the NYU Robert F. Wagner Graduate School of Public Service and former assistant HHS [Department of Health and Human Services] secretary for planning and evaluation during the Obama administration — and I daresay one of the most respected health policy analysts anywhere. The piece is called “Health Systems and Social Services — A Bridge Too Far?” And it’s the first article I’ve seen that really does question whether what’s become dogma in health policy over the past decade that — tending to what are called social determinants of health, things like housing, education, and nutrition — can improve health as much as medical care can. Rather, argues Glied, quote, “There are fundamental mismatches between the priorities and capabilities of hospitals and health systems and the task of addressing social determinants of health,” and that, basically, medical providers should leave social services to those who are professional social service providers. That is obviously a gross oversimplification of the argument of the piece, however, but I found it really thought-provoking and really, for the first time, someone saying, maybe we shouldn’t be spending all of this health care money on social determinants of health. Maybe we should let social service money go to the social service determinants of health. Anyway, we will see if this is the start of a trend or just sort of one outlier voice. OK, that is 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 us a review; that helps other people find us, too. Special thanks, as always, to our amazing engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me, or X me, or whatever. I’m still there @jrovner, also on Bluesky and Threads. Rachel?
Cohrs: I’m @rachelcohrs on X.
Rovner: Alice.
Ollstein: @AliceOllstein.
Rovner: Joanne.
Kenen: @JoanneKenen on Twitter, @joannekenen1 on Threads.
Rovner: We will be back in your feed next week. Until then, be healthy.
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Mississippi’s Cervical Cancer Deaths Indicate Broader Health Care Problems
Shementé Jones knew something wasn’t right. Her back hurt. She felt pain during sex.
She said she kept telling her doctor something was wrong.
Her doctor told her, “Just wash your underwear in Dreft,” Jones said, referring to a brand of detergent.
Shementé Jones knew something wasn’t right. Her back hurt. She felt pain during sex.
She said she kept telling her doctor something was wrong.
Her doctor told her, “Just wash your underwear in Dreft,” Jones said, referring to a brand of detergent.
Within months of that 2016 appointment, Jones, who lives in a suburb of Jackson, Mississippi, was diagnosed with stage 3 cervical cancer. She underwent a hysterectomy then weeks of radiation therapy.
“I ended up fine,” said Jones, now 43. “But what about all the other women?”
The question is especially pertinent in Jones’ home state, which had the nation’s second-highest age-adjusted cervical cancer mortality rate, 3.4 deaths per 100,000 women and girls annually from 2016 through 2020, behind only Oklahoma, according to National Cancer Institute data. And, for non-Hispanic Black women such as Jones, the rates in the state are even higher — 3.7 deaths per 100,000 people. This all translates to about 50 avoidable deaths of Mississippi women from cervical cancer each year in this largely rural state.
Health care experts said such a high death rate from a cancer that is preventable, detectable, and successfully treatable when found early is a warning sign about the general state of health care in Mississippi.
“They desperately need help there,” said Otis Brawley, a professor of oncology at Johns Hopkins School of Medicine and an expert on health disparities. “Political leadership is incredibly important in turning this around, and in Mississippi, the political leadership don’t give a damn.”
Despite the beauty of Mississippi, from the rolling hills of the Natchez Trace to white-sand beaches on the Gulf of Mexico, and the cultural renown of its famous musicians and storytellers, the state’s reputation is marred by its high rates of poverty. People who live there are accustomed to being the butt of jokes, but it hurts.
“Often Mississippi gets represented poorly,” said Mildred Ridgway, an OB-GYN at the University of Mississippi Medical Center in Jackson.
Recently the state has reeled from crisis after crisis. As recently as March, tornadoes and other severe weather killed more than two dozen people and caused extensive damage. Last year, the water in Jackson, the state capital, was undrinkable for months because of treatment plant failures.
On just about any measure of health, Mississippi ranks near or at the bottom. Nationally, an estimated 10% of people under 65 lack health insurance, but in Mississippi it is about 14%. Deaths from cardiovascular disease, diabetes, cancer, and many other illnesses are among the highest per capita in the country.
The high rates of poverty contribute to the high cervical cancer mortality, health experts said. About 19% of Mississippians — nearly 1 in 5 — live in poverty, while nationally it is about 13%.
“If I had to pinpoint what that’s from, it’s from lack of education,” said Ridgway, referring to a lack of knowledge about regular cervical cancer screening, which the U.S. Preventive Services Task Force recommends every three years for women 21 to 65.
But it likely goes far beyond that, many health experts said. Doctors may be less likely to stress preventive care to less educated women and women of color, studies suggest.
“There’s a big difference in the quality of care,” said Rajesh Balkrishnan, a professor of public health at the University of Virginia who has extensively studied oncology care in Appalachia and other underserved areas.
In her case, Jones said, she could not get her doctor’s office to return her calls in a timely manner. She was concerned about her symptoms.
“I felt I wasn’t listened to. I called her more than she called me,” Jones said of her doctor. “I was going to my appointments, and I was ignored.”
And getting access to any care — let alone quality, culturally competent care from providers who acknowledge a patient’s heritage, beliefs, and values during treatment — may be difficult.
Most of the state’s 82 counties are rural. The average travel distance to a grocery store is 30 miles, and half the population lives in a county that is considered medically underserved, said Letitia Thompson, a vice president in Mississippi for the American Cancer Society.
Low-income rural residents often lack reliable transportation, she said, and even if they own a vehicle, they lack gas money. They often can’t find — or pay for — someone to take care of their children so they can go to the doctor. Women with low-paying jobs often lack the time to drive to a clinic in a distant town, or the ability to take off from work without losing pay.
“Women who work and take care of children often have a huge burden of responsibility,” Ridgway said. “They don’t have time or the money.”
Many also don’t have insurance. While the Affordable Care Act has lowered the uninsured rate in Mississippi, an estimated additional 88,000 Mississippians could have coverage through Medicaid if the state expanded eligibility for the federal-state insurance program for low-income Americans. But the state is one of 10 that have not agreed to expand coverage to more adults.
Mississippi Gov. Tate Reeves, a Republican up for reelection this year, is opposed to expansion. His Democratic challenger, Brandon Presley, a second cousin of the music legend Elvis, favors it. Polls show Presley lagging Reeves.
Without expansion of Medicaid, people who have low incomes are often left to decide between forgoing insurance and purchasing a policy through the Affordable Care Act marketplace if they cannot get insurance through employment. Even if they qualify for subsidized marketplace plans, they may face high deductibles or copayments for visits, health experts said. That often means going to the doctor only when sick. Preventive care becomes a luxury.
“You save your health care dollars for when you are sick or your kids are sick,” said Thompson, of the American Cancer Society.
But regular medical care can make all the difference with cervical cancer. Pap tests have long helped detect abnormal cervical cells that could turn malignant. Brawley said the test is “one of the best” cancer screening tests because of its accuracy.
In 2006, vaccines to prevent cervical cancer were first approved by the FDA. The vaccines guard against the common sexually transmitted infection called the human papillomavirus, which causes nearly all cervical cancers. The HPV vaccine is most effective when administered before a person has become sexually active; the federal recommendation is to get the shots by age 12.
Only a handful of places in the U.S. — including Hawaii, Rhode Island, Virginia, Puerto Rico, and the District of Columbia — require the vaccines to attend school. California has pending legislation that initially would have required that middle schoolers get the shots, but the bill has since been watered down to recommend them instead.
Mississippi does not require the vaccine, and the state has had the lowest share of fully vaccinated teens by a large margin for years. Fewer than 39% of teens there were up to date on HPV vaccination as of 2022, according to the CDC, compared with an estimated 63% nationally.
Thompson said she thinks many parents are hesitant to have their children vaccinated because they believe it would encourage sexual activity.
“This is an anti-cancer vaccine,” Thompson said.
Krista Guynes, director of the women’s health program at the Mississippi State Department of Health, said the state has several efforts underway to better inform women about the need for screening. It also has clinics for uninsured women. In partnership with the National Cancer Institute and University of Mississippi Medical Center, she said, the health department is conducting a study to evaluate risk and look for new biomarkers in women undergoing screening for cervical cancer.
As for Jones, she considers herself lucky to have survived stage 3 cancer.
“I would just like to say to every woman, ‘Get the vaccine.’ The vaccine will make the difference, so they won’t have to be told, ‘I’m sorry, you have cancer.’”
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' 'What the Health?': A Not-So-Health-y GOP Debate
The Host
Julie Rovner
KFF Health News
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.
For the first time since 2004, it appears health insurance coverage will not be a central issue in the presidential campaign, at least judging from the first GOP candidate debate in Milwaukee Wednesday night. The eight candidates who shared the stage (not including absent front-runner Donald Trump) had major disagreements over how far to extend abortion restrictions, but there was not even a mention of the Affordable Care Act, which Republicans have tried unsuccessfully to repeal since it was passed in 2010.
Meanwhile, a new poll from KFF finds that health misinformation is not only rampant but that significant minorities of the public believe things that are false, such as that more people have died from the covid vaccine than from the covid-19 virus.
This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, Victoria Knight of Axios, and Margot Sanger-Katz of The New York Times.
Panelists
Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Victoria Knight
Axios
Margot Sanger-Katz
The New York Times
Among the takeaways from this week’s episode:
- The first Republican presidential debate of the 2024 cycle included a spirited back-and-forth about abortion, but little else about health care — and that wasn’t a surprise. During the primary, Republican presidential candidates don’t really want to talk about health insurance and health care. It’s not a high priority for their base.
- The candidates were badly split on abortion between those who feel decisions should be left to the states and those who support a national ban of some sort. Former Vice President Mike Pence took a strong position favoring a national ban. The rest revealed some public disagreement over leaving the question completely to states to decide or advancing a uniform national policy.
- Earlier this summer, Stanford University’s Hoover Institute unveiled a new, conservative, free-market health care proposal. It is the latest sign that Republicans have moved past the idea of repealing and replacing Obamacare and have shifted to trying to calibrate and adjust it to make health insurance a more market-based system. The fact that such plans are more incremental makes them seem more possible. Republicans would still like to see things like association health plans and other “consumer-directed” insurance options. Focusing on health care cost transparency could also offer an opportunity for a bipartisan moment.
- In a lawsuit filed this week in U.S. District Court in Jacksonville, two Florida families allege their Medicaid coverage was terminated by the state without proper notice or opportunity to appeal. It seems to be the first such legal case to emerge since the Medicaid “unwinding” began in April. During covid, Medicaid beneficiaries did not have to go through any kind of renewal process. That protection has now ended. So far, the result is that an estimated 5 million people have lost their coverage, many because of paperwork issues, as states reassess the eligibility of everyone on their rolls. It seems likely that more pushback like this is to come.
- A new survey released by KFF this week on medical misinformation found that the pandemic seems to have accelerated the trend of people not trusting public health and other institutions. It’s not just health care. It’s a distrust of expertise. In addition, it showed that though there are people on both ends — the extremes — there is also a muddled middle.
- Legislation in Texas that was recently signed into law by Republican Gov. Greg Abbott hasn’t gotten a lot of notice. But maybe it should, because it softens some of the state’s anti-abortion restrictions. Its focus is on care for pregnant patients; it gives doctors some leeway to provide abortion when a patient’s water breaks too early and for ectopic pregnancies; and it was drafted without including the word “abortion.” It bears notice because it may offer a path for other states that have adopted strict bans and abortion limits to follow.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:
Julie Rovner: KFF Health News’ “Doctors and Patients Try to Shame Insurers Online to Reverse Prior Authorization Denials,” by Lauren Sausser.
Margot Sanger-Katz: KFF Health News’ “Life in a Rural ‘Ambulance Desert’ Means Sometimes Help Isn’t on the Way,” by Taylor Sisk.
Joanne Kenen: The Atlantic’s “A Simple Marketing Technique Could Make America Healthier,” by Lola Butcher.
Victoria Knight: The New York Times’ “The Next Frontier for Corporate Benefits: Menopause,” by Alisha Haridasani Gupta.
Also mentioned in this week’s episode:
- NPR’s “Two Families Sue Florida for Being Kicked off Medicaid in ‘Unwinding’ Process,” by Selena Simmons-Duffin
- NPR’s “Texas Has Quietly Changed Its Abortion Law,” by Selena Simmons-Duffin.
- KFF’s “Poll: Most Americans Encounter Health Misinformation, and Most Aren’t Sure Whether It’s True or False.”
Click to open the transcript
Transcript: A Not-So-Health-y GOP Debate
[Editor’s note: This transcript, generated using transcription software, 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. 24, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So, here we go. We are joined today via video conference by Margot Sanger-Katz of The New York Times.
Margot Sanger-Katz: Good morning.
Rovner: Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hi, everybody.
Rovner: And Victoria Knight of Axios News.
Victoria Knight: Hello, everyone.
Rovner: No interview this week, but we’ll have an entire interview episode next week. More on that later. First, we will get to this week’s news. Well, Wednesday night saw the first Republican presidential debate of the 2024 cycle, minus front-runner Donald Trump, in what could only be called a melee, on Fox News Channel. And while there was a spirited debate about abortion, which we’ll get to in a minute, I didn’t hear a single word about anything else health-related — not Medicare or Medicaid, nor any mention of the Affordable Care Act. Was anybody surprised by that? For the record, I wasn’t. I wasn’t really expecting anything except abortion.
Kenen: Well, somebody, I think it was [former New Jersey Gov. Chris] Christie actually pointed out that nobody was talking about it.
Knight: Mike Pence. It was [former Vice President] Mike Pence, actually.
Kenen: Oh, Pence. OK. “Nobody’s talking about Medicare and Social Security.” And then he didn’t talk about it, and nobody mentioned the ACA.
Rovner: Is the ACA really gone as a Republican issue, for this cycle, do we think?
Kenen: Well, I think it’s become, like, a guerrilla warfare. Like, they’re still trying to undermine it. They’re not trying to repeal it, but they’re looking at its sort of soft underbelly, so to speak, and trying to figure out where they can put more market forces on, which we can sort of come back to later. But they spent 10 years trying to repeal it, and they just figured out what they’ve got to do now is pretend it’s not there. Right now, abortion is their topic.
Rovner: Well, let us turn to that.
Sanger-Katz: Yeah, I was just going to say that we’ve been seeing this happen a little bit over the last couple of cycles. In the 2020 race — I went through the transcripts of all of the speakers during the Republican National Convention and was really staggered by how few mentions of Obamacare there were relative to the way that the issue had been discussed in the past. But I think — just a note, that this is the Republican debate. Republicans don’t really want to be talking about health insurance and health care, because they don’t really have affirmative plans to put forward and because I think that they see that there are some real political liabilities in staking out a strong position on these issues. But in a general election, I think it will be impossible for them to avoid it, because, I think, Joe Biden has a lot of things that he wants to say. I think he is very committed to, in particular, broadcasting that he wants to protect Medicare. I think he’s quite proud of the expansions that he’s made of the Affordable Care Act. And so, this is a little bit of a weird moment in the race because, you know, we really only have one party that’s having a primary, and its leading candidate is not participating in the debates. And so, I think these candidates are trying to focus elsewhere. But it is — I will say, as someone who’s covered a couple of these now — it is a weird experience to have health care and health policy feel like a second-tier issue, because it was so central — Obamacare, in particular — was just so central to so many of these election cycles and such an animating and unifying issue among Republican voters, that this kind of post-failure-of “repeal and replace” era feels very different.
Kenen: One really quick thing is, they’re going to hit Biden on inflation. Economically, it’s his most vulnerable point, and health care costs are a burden. And I was a little surprised, without going into Obamacare and repeal and all that stuff, they mentioned the price of food, the price of gas, they mentioned interest rates and housing. It would have been really easy, and I expect that at some point they will start doing it, to talk about the cost of health care, because Biden’s done a huge amount on coverage and making insurance more affordable and accessible. But the cost of health care, as we all know, is still high in America.
Rovner: And at very least, the cost of prescription drugs, which has been a bipartisan issue going back many, many years. All right. Well, the one health issue that, not surprisingly, did get a lot of attention last night was abortion. With the exception of Mike Pence, who has been an anti-abortion absolutist for his entire tenure in Congress, as governor of Indiana, and as vice president, everyone else looked pretty uncomfortable trying to walk the line between the very anti-abortion base of the party and the recognition that anti-abortion absolutism has been a losing electoral strategy since the Supreme Court overturned Roe last year. What does this portend for the rest of the presidential race and for the rest of the down-ballot next year? Rather than trying to bury the fact that they all disagree, they all just publicly disagreed?
Knight: And I think they also, like, if you listened, [former U.S. ambassador to the United Nations] Nikki Haley kind of skirted around how she would address it. She talked about some other things, like contraception and saying that there just weren’t enough votes in the Senate to pass any kind of national abortion ban. [Florida Gov.] Ron DeSantis also, similarly, said he was proud of his six-week bill but didn’t quite want to answer about a national abortion ban. There were the few that did say, like, Hey, we’re into that. And some said, You know, it needs to go back to the states. So there definitely was kind of this slew of reactions on the stage, which I think just shows that the Republican Party is figuring out what message, and they don’t have a unified one on abortion, for sure.
Rovner: I do want to talk about Nikki Haley for a second, because this is what she’s been saying for a long time that she thinks that there’s a middle ground on abortion. And, you know, bless her heart. I’ve been covering this for almost 40 years and there has never been a middle ground. And she says, well, everybody should be for contraception. Well, guess what? There’s a lot of anti-abortion stalwarts who think that many forms of contraception are abortion. So there isn’t even a consensus on contraception. Might she be able to convince people that there could be a middle ground here?
Sanger-Katz: Oh, what I found sort of interesting about her answers: I think on their face they were kind of evasive. They were like, I don’t need to answer this question because there’s not a political consensus to do these things. But I do think it was sort of revealing of where the political consensus is and isn’t that I think she’s right. Like, realistically, there aren’t the votes to totally ban abortion; there aren’t the votes to renew the Roe standard. And I think she was in some ways very honestly articulating the bind that Republicans find themselves in, where they, and I think a lot of their voters, have these very strong pro-life values. At the same time, they recognize that getting into discussions about total abortion bans gives no favors politically and also isn’t going to happen in the near future. So, I felt like, as a journalist, you know, thinking about how I would feel having asked her that question, I felt very dissatisfied by her answer, because she really didn’t answer what she would like to do. But I do think she channeled the internal debate that all these candidates are facing, which is, like, is it worth it to go all the way out there with a policy that I know will alienate a lot of American voters when I know that it cannot be achieved?
Rovner: I was actually glad that she said that because I’ve been saying the opposite is true also — everybody says, well, why didn’t, you know, Congress enshrine abortion rights when they could have? The fact is, they never could have. There have never been 60 votes in the Senate for either side of this debate. That’s why they tried early after Roe to do national bans and then a constitutional amendment. They could never get enough votes. And they tried to do the Freedom of Choice Act and other abortion rights bills, and they couldn’t get those through either. And this is where I get to remind everybody, for the 11,000th time, the family planning law, the Title X, the federal Family Planning [Services and Public Research] Act, hasn’t been reauthorized since 1984 because neither side has been able to muster the votes even to do that. Sorry, Joanne, you wanted to say something.
Kenen: No, I thought Haley’s response on abortion was actually really pretty interesting on two points, right? She didn’t technically answer the question, but she also said this question is a fantasy — you know, face it. And, you know, she said that, and then she mentioned the word contraception. She did not dwell on it. She sort of said it sort of quickly. She missed an opportunity, maybe, just for one or two more sentences. You know, she said we need to make sure that contraception … she’s the only woman on that stage. She’s a mother; she’s got two kids. And, you know, there is uncertainty. After Dobbs there were advocacy groups saying, you know, they’re going to ban contraception tomorrow, and that didn’t happen. And we still don’t know how that fight will play out and what types of contraception will be debated. But I noticed that she said that on a stage full of Republicans, and I noticed that nobody else — all men — didn’t pick up on it.
Rovner: The big divide seemed to be, do you want to leave it completely to the states or do you want to have some kind of national floor of a ban? And they seemed, yeah —
Kenen: Yeah, and the moderators didn’t pick up on that. I mean, there was such a huge brouhaha on the stage. You know, the moderators had a lot of trouble moderating last night. It wouldn’t have been easy for them to get off of abortion and follow up on contraception. But I thought it was just sort of an interesting thing that she noted it.
Sanger-Katz: I will say also, and I agree with Julie: With the possible exception of Mike Pence, even the candidates that were endorsing some kind of national abortion policy, we’re talking about a 15-week gestational limit. There really wasn’t anyone who was coming out and saying, “Let’s ban all abortions. Let’s even go to six weeks,” which many of the states, including Florida, have done. So I do think, again, like, even the candidates that were more willing to take an aggressive stand on whether the federal government should get involved in this issue were moderating the position that you might have expected for them before Dobbs.
Kenen: But even 15 weeks shows how the parameters of this conversation have changed, because what the Republicans had been doing pre-Dobbs was 20 weeks, with their so-called fetal-pain bills. So 15 weeks, which would have sounded extremely radical two years ago — compared to six weeks, 15 sounds like, oh, you know, this huge opportunity for the pro-choice people. And it is another sign of how this space has shrunk.
Sanger-Katz: Yeah, no, I don’t mean that it’s a huge opportunity for the pro-choice people, but I think it reflects that even the candidates who were willing to go the most out on the limb in wanting to enforce a national abortion restriction understand the politics do not permit them to openly advocate going all the way towards a full ban.
Rovner: While we are on the subject of Republicans and health, there actually is a new Republican plan to overhaul the health system. Sort of. It’s from the Hoover Institution at Stanford, from which a lot of conservative policy proposals emanate. And it’s premised on the concept that consumers should have better control of the money spent on their health care and a better idea of what things cost. Now, this has basically been the theme of Republican health plans for as long as I can remember. And the lead author of this plan is Lanhee Chen, who worked for Republicans in the Senate and then led presidential candidate Mitt Romney’s policy shop, and whose name has been on a lot of conservative proposals. But I find this one notable more for its timing. Republicans, as we mentioned, appear to have internalized the idea that the only thing they can agree on when it comes to health care is that they don’t like the Affordable Care Act. Is that changing or is this just sort of hope from the Republican side of the policy wonk shop?
Sanger-Katz: I think this is connected to the discussion that we had about the debate, but it feels to me like we are in a bit of a post Obamacare era where the fights about “Are we going to continue to have Obamacare or not?” have sort of faded from the mainstream of the discussion. But there’s still plenty of discussion to be had about the details. The Democrats clearly want to expand Obamacare in various ways. Some of those they have done in a temporary fashion. Others are still on the wish list. And I think this feels very much like the kind of calibration adjustment, you know, small changes, tinkers on the Republican side to try to make the health insurance market a little bit more market-based. But this is not a big overhaul kind of plan. This is not a repeal-and-replace plan. This is not a plan that is changing the basic architecture of how most Americans get their insurance and how it is paid for. This is a plan that is making small changes to the regulation of insurance and to the way that the federal government finances certain types of insurance. That said, I think the fact that it’s more incremental makes it feel like these are things that are more likely to potentially happen because they feel like there are things that you could do without having a huge disruptive effect and a big political backlash and that you could maybe develop some political consensus around.
Rovner: It does, although I do feel like, you know, this is a very 2005 plan. This is the kind of thing that we would have seen 15 years ago. But as Democrats have gotten the Affordable Care Act and discovered that the details make it difficult, Republicans have actually gotten a lot on the transparency side and, you know, helping people understand what things cost. And that hasn’t worked very well either. So there’s a long way to go, I think, on both sides to actually make some of these things work. Victoria, did you want to add something?
Knight: Yeah, I’ve been talking to Republicans a lot, trying to figure out like what is their next go-to going to be. And I think they’re pretty understanding that ACA is set in place, but they still don’t want to give up that there are alternative types of health insurance that they want to put out there. And I think that seems that’s kind of what they realize they can accomplish if they get another Republican president and they’re going to try to do association health plans again. They’re going to try to expand some of these what they call health reimbursement arrangements, things like that, to just like kind of try to add some other types of health insurance options, because I think they know that ACA is just too entrenched and that there’s not much else they can do outside of that. And then, yeah, I think focus a little more on the transparency and cost because they know that’s a winning message and that is the one thing in Congress right now on the health care end that seems to have bipartisan momentum for the most part.
Rovner: Yeah, I think you’re absolutely right. Well, another issue that could have come up in last night’s debate but didn’t was the unwinding of Medicaid coverage from the pandemic. The news this week is that the first lawsuit has been filed accusing a state of mistreating Medicaid beneficiaries. The suit filed against Florida by the National Health Law Program and other groups is on behalf of two kids, one with a disability, and a mom who recently gave birth. All would seem to still be eligible, and the mom says she was never told how to contest the eligibility determination that she was no longer eligible, and that she was cut off when she tried to call and complain. State officials say their materials have been approved by the Centers for Medicare & Medicaid Services, which they have, and that Florida, in fact, has a lower procedural disenrollment rate than the average state, which is also true. But with 5 million people already having been dropped from Medicaid, I imagine we’re going to start to see a little more pushback from advocacy groups about people who are, in all likelihood, still eligible and have been wrongly dropped. I’m actually a little surprised that it took this long.
Kenen: Many of the people who have been dropped, if they’re still eligible, they can get recertified. I mean, there’s no open enrollment season for Medicaid. If you’re Medicaid-eligible, you’re Medicaid-eligible. The issue is, obviously, she didn’t understand this. It’s not being communicated well. If you show up at the hospital, they can enroll you. But people who are afraid that they aren’t covered anymore may be afraid of going to the hospital even if they need to. So there’s all sorts of bad things that happen. In some of these cases, there are simple solutions if the person walks in the door and asks for help. But there are barriers to walking in the door and asking for help.
Rovner: I was going to say one of the plaintiffs in this lawsuit is a child with a disease …
Kenen: Cystic fibrosis.
Rovner: Right. That needs expensive drugs and had not been able to get her drugs because she had been cut off of Medicaid. So there’s clearly stuff going on here. It’s probably true that Florida is better than the average state, which means that the average state is probably not doing that well at a lot of these things. And I think we’re just starting to see, you know, it’s sort of mind-numbing to say, oh, 5 million people have been separated from their health insurance. And again, we have no idea how many of those have gotten other health insurance, how many of those don’t even know and won’t know until they show up to get health care and find out they’re no longer covered. And how many people have been told they’re no longer covered but can’t figure out how to complain and get back on?
Sanger-Katz: And it’s this very extreme thing that’s happening right now. But it is, in many ways, the normal system on steroids. You know, if you’ve been covering Medicaid for any period of time, as all of us have, like, people get disenrolled all of the time from Medicaid for these administrative reasons, because of some weird hiccup in the system, they move, their income didn’t match in some database. This is a problem that a lot of states face because they have financial incentives often to drop people off of Medicaid because they have to pay a portion of the cost of providing health care. And a lot of them have rickety systems, and they’re dealing with a population that often has unstable housing or complicated lives that make it hard for them to do a lot of paperwork and respond to letters in a timely way. And so part of the way that I’ve been thinking about this unwinding is that there’s a particular thing that’s happening now, and I think there’s a lot of scrutiny on it, appropriately. And I think that there should be to make sure that the states are not cutting any corners. But I also think in some ways it’s sort of like a way of pressure-testing the normal system and reminding us of all of the people who slip through the cracks in normal times and will continue to do so after this unwinding is over. And these stories in Florida, to me, do not feel that dissimilar from the kinds of stories that I have heard from patients and advocates in states long before this happened.
Rovner: Yeah, I think you’re right. It’s just shining a light on what happens. I mean, it was the oddity that they were … states were not allowed to redetermine eligibility during the pandemic because normally states are required to redetermine eligibility at least once a year. And I think some do it twice a year. So it’s, you know, these redeterminations happen. They just don’t happen all in a huge pile the way they’re happening now. And I think that’s the concern.
Sanger-Katz: And it also, I think, really shines a light on the way that Medicaid is structured, where the Affordable Care Act simplified it quite a lot because, [for example], you’re in an expansion state and you earn less than a certain amount of money, then you can get Medicaid. But there are all of these categories of eligibility where, you know, you have to be pregnant, you have to be the parent of a child of a certain age. You have to demonstrate that you have a certain disability. And I think [it] is a reminder that this is a pretty complicated safety net, Medicaid. You know, there’s lots of things that beneficiaries have to prove to states in order to stay eligible. And there’s lots of things, honestly, you know, if states really want to make sure that they are reserving resources for the people who need them, that they do need to be checking on. And so I think we’re all just sort of seeing that this is a messy, complicated process. And I think we’re also seeing that there are these gaps and holes in who Medicaid covers. And it’s not the case that we have a perfect and seamless system of universal coverage in this country. We have this patchwork and people do fall between the cracks.
Kenen: And this is one of the most vulnerable populations, obviously. Some of the elderly are also very vulnerable, but these are people who may not speak either English or Spanish. They don’t have access to computers necessarily. I mean, we’re giving the least assistance to the population that needs the most assistance. And, you know, I mean, I think if Biden wanted to be really savvy about fixing it, he’d come out with some slogan about “Instead of Medicare unwinding, it’s time to have Medicare rewinding,” or something like that, because they’re going to have to figure … I mean, they have taken some steps, but it’s a huge mess, and the uninsurance rate is going to go up, and hospitals are going to have patients that are no longer covered, and it’s not going to be good for either the health care system or certainly the people who rely on Medicaid.
Rovner: I think it’s noteworthy how much the administration has been trying not to politicize this, that apparently, you know, we keep hearing that they won’t even tell us which states, although you can … people can sort of start to figure it out. But, you know, states that are having a more difficult time keeping eligible people on the rolls, shall we say, when the administration could have … I mean, they could be trumpeting, you know, which states are doing badly and trying to shame them. And they are rather very purposely not doing that. So I do think that there’s at least an attempt to keep this as collegial, if you will, as possible in a presidential election year. So my colleagues here at KFF have a depressing, but I guess not all that surprising, poll out this week about medical misinformation and how much of the public believes things that simply aren’t true — like that more people died from the covid vaccine than covid itself, or that ivermectin is a useful treatment for the virus. It’s not. It’s for parasites. And the survey didn’t just ask about covid. People have been exposed to, and a significant percentage believe, things like that it’s harder to get pregnant if you’ve been on birth control and stop. It isn’t. Or that people who keep guns in their house are less likely to be killed by a gun than those who don’t. They’re not. But what’s really depressing is the fact that the pandemic seems to have accelerated an already spiraling trend in distrust of public institutions in general: government, local and national media, and social media. Are we ever going to be able to start to get that back? I mean, you know, we talk about the woes with public health, but this goes a lot deeper than that, doesn’t it?
Kenen: And it’s not just health care. When you look at historical metrics about trust — which I’ve had to for a course I teach — we were never a very trusting society, it turns out. We’ve had large sectors of the population haven’t been trusting of many institutions and sectors of society for decades. We’re just not too huggy in this country. It’s gotten way worse. And what you said is right, but it’s broad. It’s not just doctors. It’s not just vaccines, it’s expertise. This distrust is really corrosive. But of all the things in that survey, one that really blew me away was we’re like, what, 13 years since Obamacare was passed? Only 7% or 8% — “only,” I should say only in quotes, you know — only 7% or 8% still thought there were death panels, but something like 70% wasn’t sure if there were death panels. Like, has anyone known anyone who went before a death panel? Since 2010? And yet 70% — I mean, I may be a little off, I didn’t write it down — but it’s something like 70% weren’t sure. And that is a mind-blowing number. It just says, you know, they weren’t ready to come out and say, yes, there are death panels. But that meant that a lot of Democrats also weren’t sure if there were death panels There are no death panels.
Knight: I was just gonna say, I also thought it was interesting that it showed people do use social media to get a lot of their information, but then they also don’t trust the information that they get on there. So it’s kind of like, yeah …
Rovner: And they’re right not to!
Knight: Yeah, they’re absolutely right not to. But then it’s also like, well, they’re then just not getting health information at all, or if they’re getting it, they just don’t trust it. So just showcasing how difficult it is to fill that void of health information, like, people just aren’t getting it or don’t trust it.
Rovner: I feel like some of this is social literacy. I mean, you know, we talk about health literacy and things that people can understand, but, you know, people don’t understand the way journalism works, the difference between the national news and what you see on Facebook. And I think that’s, Joanne, going back to your point about people not trusting expertise, it’s also not being able to figure out what expertise is and who has expertise. I mean, that’s really sort of the bottom line of all this, isn’t it?
Kenen: Well, I mean, I was doing some research — I can’t remember the exact details, this was something I read several months ago — but there was one survey maybe a couple of years ago where the majority of people said they don’t trust the news they read, but they’re still getting their news from something that they don’t trust. So it sounds sort of funny, but it’s actually not. I mean, it’s really a crisis of people don’t know what to believe. The uncertainty is corrosive, and it’s health care and politics, this widening chasm of people with alternative sets of facts — or alternative worldviews, anyway. So it’s not good. I mean, it was a really good survey, it was a really interesting survey, but some of it wasn’t so surprising. I mean, that there’s still people who, like, the fertility issues and the vaccines. You can sort of understand why those have lingered in the environment we’re in. I had actually had a conversation the other day with a political scientist who had studied the death panel rumors 10 years ago. And I said, what about now? And, you know, he was sort of … he hadn’t looked at it and he was sort of saying, well, you know, there aren’t any. And people have probably figured that out by now. Well, no. I have to email him the study, right?
Sanger-Katz: Anytime that I read a study like this, I am also reminded — and I think it is useful for all of us to be reminded of this and probably most people who are listening to the podcast — that the average American is just not as tuned in on the news and on the Washington debate and on the minutia of public policy, as all of us are. So, you know, and I think that that is part of the reason why you see so many people not sure about these things. It’s clearly the case that they are being exposed to bad information and that is contributing to their uncertainty. And I think the rise of misinformation about both health policy and about actual, you know, health care, in the case of covid, is a bad and relatively newer phenomenon. But I also think a lot of people just aren’t paying that close attention, you know, and it’s good to be reminded of that.
Kenen: The book I just read that I referred to — it’s by an MIT political scientist named Adam Berinsky, and it’s called “Political Rumors.” And it just came out, and he was talking about exactly that, that we’re all exposed to misinformation. We can’t avoid it. It’s everywhere. And that for people who aren’t as engaged with day-to-day politics, they end up uncertain. That’s this messy middle, which they also use in the KFF survey. They came up with a very similar conclusion about the “muddled middle,” I think was the phrase they used. And what this political scientist said to me the other day was that, you know, pollsters tend to not look at the “I don’t know, I’m uncertain, no opinion.” They sort of shunt them aside and they look at the “yes” or “no” people. And he was saying, no, no, no, you know, this is the population we really need to pay attention to, the “Uncertains” because they’re probably the ones you can reach more. And in the real world, we saw that with vaccination, right? I mean, in the primary series — I mean, booster takeup was low — but in the primary when there was a lot of uncertainty about the vaccines, the people who said “no way I am ever going to get the vaccine” — I mean, KFF was surveying this every month — most of them didn’t. You know, a few on the margins did, but most of them who were really militantly against the vaccine didn’t take it. The ones who were “I don’t know” and “I’m a little scared” and “I’m waiting and seeing” … a lot of them did take it. They were reached. And that’s sort of an important lesson to shift the focus as we deal with distrust, as we deal with disinformation and we deal with messaging, which is good, and truth-building and confidence-building, it is that muddled middle that’s going to have to be more of a target than we have traditionally thought.
Rovner: Well, in the interest of actually giving good information, we have a couple of updates on the reproductive health front. For those of you keeping score, abortion bans took effect this week in South Carolina and Indiana after long drawn-out court battles. Meanwhile, in Texas, an update to our continuing discussion of women with pregnancy complications who’ve been unable to get care because doctors fear running afoul of that state’s ban, a couple of weeks ago, reports Selena Simmons-Duffin at NPR, Texas Gov. Greg Abbott very quietly signed a law that created a couple of exceptions to the ban for ectopic pregnancies and premature rupture of membranes, both of which are life-threatening to the pregnant woman, but just not necessarily immediately life-threatening. I had not heard a word about this change in the law until I saw Selena’s story. Had any of you?
Kenen: In fact, it should have come up because of this court case in Texas about, you know, a broader health exception — it’s not even “health,” it’s life-threatening. It’s like, at what point do you get sick enough that your life is in danger as opposed to, you know, should you be treating that woman before … you see what direction it’s going, and you don’t let them go to the brink of death? I mean, that was the court case and Abbott fought that. But yeah, it was interesting.
Rovner: It was a really interesting story that was also, you know, pushed by a state legislator who was trying very hard not to … never to say the word abortion and to just make sure that, you know, this was about health care and not abortion. It’s an interesting story, we will link to it.
Sanger-Katz: I wonder if other states will do this as well. It seems like, as we’ve discussed, you know, abortion bans are not as popular as I think many Republican politicians thought they would [be]. And I do think that these cases of women who face really terrible health crises and are unable to get treated are contributing to the public’s dislike of these policies. And on the one hand, I think that there is a strong dislike of exceptions among people who support abortion bans because they don’t want the loopholes to get so big that the actual policy becomes meaningless. On the other hand, it seems like there is a real incentive for them in trying to fix these obvious problems, because I think it contributes to bad outcomes for women and children. And I think it also contributes to political distaste for the abortion ban itself.
Kenen: But it’s very hard to legislate every possible medical problem … I mean, what Texas did in this case was they legislated two particular medical problems. And some states … they have the ectopic — I mean, ectopic is not … there’s no stretch of the imagination that that’s viable. Right? The only thing that happens with an ectopic pregnancy is it either disintegrates or it hemorrhages. I mean, the woman is going to have a problem, but making a list of “you get this condition, you can have a medical emergency abortion, but if you have that condition and your state legislator didn’t happen to think about it, then you can’t.” I mean, the larger issue is: How do you balance the legal restrictions and medical judgments? And that’s … I don’t think any state that has a ban has completely figured that out.
Rovner: Right. And we’re back to legislators practicing medicine, which is something that I think the public does seem to find distasteful.
Sanger-Katz: I mean, I don’t think that this solves the problem at all, but I think it does show a surprising responsiveness to the particular bad outcomes that are getting the most publicity and a sort of new flexibility among the legislators who support these abortion bans. So it’s interesting.
Rovner: All right. Meanwhile, another shocking story about pregnant women being treated badly. The Centers for Disease Control and Prevention reported this week that a survey conducted this April found that 1 in 5 women reported being mistreated by medical professionals during pregnancy or delivery. For women of color, the rate was even higher: more than 1 in 4. Mistreatment included things like getting no response to calls for help, being yelled at or scolded, and feeling coerced into accepting or rejecting certain types of treatment. We know a lot of cases where women in labor or after birth reported problems that went ignored. Among the most notable, of course, was tennis legend Serena Williams, who gave birth to her second child this week after almost not surviving the birth of her first. We’re hearing so much about the high maternal mortality rate in the U.S. What is it going to take to change this? This isn’t something that can be solved by throwing more money at it. This has got to be sort of a change in culture, doesn’t it?
Kenen: No. I mean, it’s … if someone who’s just given birth, particularly if it’s the first time and you don’t know what’s normal and what’s not and what’s dangerous and what’s not dangerous, and, you know, it’s a trauma to your body. I mean, you know, I had a very much-wanted child, but labor is tough, right? I always say that evolution should have given us a zipper. But the philosophy should be, if someone who’s just been through this physical and emotional ordeal, has discomfort or a question or a fear, that you respect it and that you calm it down, you don’t dismiss it or yell at somebody. When you’re pregnant, you read all these books and you go to Lamaze workshops and you learn all this stuff about labor and delivery. You learn nothing about what happens right after. And it’s actually quite uncomfortable. And no one had ever told me what to expect. And I didn’t know. And I always, like, when younger women are having babies, I let them know that, you know, talk to your doctor or learn about this or be prepared for this, because that is a really vulnerable point. And that this survey — and it’s more Black and poor women, and Latina women in this survey, it’s not that … it’s disproportionate like everything else in health care — they’re being disrespected and not listened to. And some of them are going to have bad medical outcomes because of that.
Rovner: As we are seeing. All right. Well, that is this week’s news now. We will take a quick break. Then we will come back and do our extra credit.
Hey, “What the Health?” listeners: You already know that few things in health care are ever simple. So if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health journalist and my friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you get your podcasts.
OK, we’re back. 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 missed 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. Victoria, why don’t you go first this week?
Knight: So my extra credit is from The New York Times, and the story is called “The Next Frontier for Corporate Benefits: Menopause.” It basically details how a lot of companies are realizing that, you know, as more women get into leadership positions, high-level leadership, executive positions, they’re in their 40s, late 40s, early 50s, that’s when menopause or perimenopause starts happening. And that’s something that can last for a while. I didn’t realize the stories, that it can last almost 10 years sometimes. And so it was talking about how, you know, it affects women for a long period of time. It can also affect their productivity in the workplace and their comfort and being able to accomplish things. And so they were realizing, you know, we kind of need to do something to help these women stay in these positions. And there was actually an interesting tidbit at the very end where it was talking about some companies may even be, like, legally compelled to make accommodations. And that’s due to the new Pregnant Workers Fairness Act, which says that employers have to provide accommodations for people experiencing pregnancy but also related medical conditions. They’re saying menopause could be included in that. And just some of the benefits some of these companies were offering were access to virtual specialists, but they were talking about, like, if they need to do other things like cooling rooms and stuff like that. So I thought it was kind of interesting. And another employer benefit that maybe some employers are thinking about adding.
Kenen: I think all offices should have, like, little nap cubicles and man-woman, pregnant-not pregnant. And, you know, just like “life is rough.” [laughter]
Knight: I agree.
Kenen: Just a little corner!
Rovner: Joanne, why don’t you go next?
Kenen: Mine is from The Atlantic. It’s by Lola Butcher. And it is “A Simple Marketing Technique Could Make America Healthier.” And it’s basically talking about how some medical practices are doing what we in the news business and the tech industry knows of as “A-B testing.” You know, a tech company may try a big button or a little button and see which one consumers like. Newsrooms change headlines— headline A, headline B and see which one draws more readers — and that hospitals and medical practices have been trying to do. In some cases, it’s text messaging two different kinds of reminders to figure out, you know … one example was the message with something like 78 characters got women to book a mammogram, but a message with 155 characters did not. Two text messages were better than one for booking children’s vaccines. So some people are very excited about this. It’s getting people to do preventive care and routine care. And some people think this is just not the problem with health care, that it’s way deeper and more systemic and that this isn’t really going to move the needle. But it was an interesting piece.
Rovner: Any little thing helps.
Kenen: Right. This was an interesting piece.
Rovner: Margot.
Sanger-Katz: I wanted to talk about an article in KFF Health News from Taylor Sisk. The headline is “Life in a Rural ‘Ambulance Desert’ Means Sometimes Help Isn’t on the Way,” and it’s a really interesting exploration of some of the challenges of ambulance care in rural areas, which is a topic that is near and dear to my heart. Because when I was a reporter in New Hampshire covering rural health care delivery, I spent the better part of a year writing about ambulance services and the challenges there. And I think this story is highlighting a real challenge for people in these communities. And I think it’s also really a reminder that the ambulance system is this weird, off-to-the-side part of our health care system that I think is often not well integrated and not well thought of. It tends to be regulated as transportation, not as health care. It tends to be provided by local governments or by contractors hired by local governments as opposed to health care institutions. It tends to have a lot of difficulty with billing a very high degree of surprise billing for its patients, and also just a real lack of health services research about best practices for how fast ambulances should arrive, what level of care they should provide to people, and on and on. And I just think that it’s good that she’s highlighted this issue. And also, I think it is a reminder to me that ambulances are probably worth a little bit more attention from reporters overall.
Rovner: Well, my story is also something that’s near and dear to my heart because I’ve been covering it for a long time. It’s from my KFF Health News colleague Lauren Sausser. It’s called “Doctors and Patients Try to Shame Insurers Online to Reverse Prior Authorization Denials.” And it is a wonderful 2023 update to a fight that Joanne and I have been covering since, what, the late 1990s. It even includes comments from Dr. Linda Peeno, who testified about inappropriate insurance company care denials to Congress in 1996. I was actually at that hearing. The twist, of course, now is that while people who were wrongly denied care at the turn of the century needed to catch the attention of a journalist or picket in front of the insurance company’s headquarters. Today, an outrage post on Instagram or TikTok or X can often get things turned around much faster. On the other hand, it’s depressing that after more than a quarter of a century, patients are still being caught in the middle of appropriateness fights between doctors and insurance companies. Maybe prior authorization will be the next surprise medical bill fight in Congress. We shall see. All right. That is our show for the week. 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 amazing engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me or X me or whatever. I’m @jrovner, also on Bluesky and Threads. Joanne?
Kenen: I am also on Twitter, @JoanneKenen; and I’m on Threads, @joannekenen1; and Bluesky, JoanneKenen.
Rovner: Margot.
Sanger-Katz: I’m @sangerkatz.
Rovner: Victoria.
Knight: I’m @victoriaregisk on X and Threads.
Rovner: Well, we’re going to take a week off from the news next week, but watch your feed for a special episode. We will be back with our panel after Labor Day. Until then, be healthy.
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KFF Health News' 'What the Health?': On Abortion Rights, Ohio Is the New Kansas
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Julie Rovner
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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.
Ohio voters — in a rare August election — turned out in unexpectedly high numbers to defeat a ballot measure that would have made it harder to pass an abortion-rights constitutional amendment on the ballot in November. The election was almost a year to the day after Kansas voters also stunned observers by supporting abortion rights in a ballot measure.
Meanwhile, the percentage of Americans without health insurance dropped to an all-time low of 7.7% in early 2023, reported the Department of Health and Human Services. But that’s not likely to continue, as states boot from the Medicaid program millions of people who received coverage under special eligibility rules during the pandemic.
This week’s panelists are Julie Rovner of KFF Health News, Emmarie Huetteman of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Rachel Roubein of The Washington Post.
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Emmarie Huetteman
KFF Health News
Joanne Kenen
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Rachel Roubein
The Washington Post
Among the takeaways from this week’s episode:
- It should not have come as much of a surprise that Ohio voters sided with abortion-rights advocates. Abortion rights so far have prevailed in every state that has considered a related ballot measure since the Supreme Court overturned Roe v. Wade, including in politically conservative states like Kentucky and Montana.
- Moderate Republicans and independents joined Democrats in defeating the Ohio ballot question. Opponents of the measure — which would have increased the threshold of votes needed to approve state constitutional amendments to 60% from a simple majority — had not only cited its ramifications for the upcoming vote on statewide abortion access, but also for other issues, like raising the minimum wage.
- A Texas case about exceptions under the state’s abortion ban awaits the input of the state’s Supreme Court. But the painful personal experiences shared by the plaintiffs — notable in part because such private stories were once scarce in public discourse — pressed abortion opponents to address the consequences for women, not fetuses.
- The uninsured rate hit a record low earlier this year, a milestone that has since been washed away by states’ efforts to strip newly ineligible Medicaid beneficiaries from their rolls as the covid-19 public health emergency ended.
- The promise of diabetes drugs to assist in weight loss has attracted plenty of attention, yet with their high price tags and coverage issues, one thorny obstacle to access remains: How could we, individually and as a society, afford this?
- Lawmakers are asking more questions about the nature of nonprofit, or tax-exempt, hospitals and the care they provide to their communities. But they still face an uphill battle in challenging the powerful hospital industry.
Also this week, Rovner interviews Kate McEvoy, executive director of the National Association of Medicaid Directors, about how the “Medicaid unwinding” is going as millions have their eligibility for coverage rechecked.
Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: KFF Health News’ “How the Texas Trial Changed the Story of Abortion Rights in America,” by Sarah Varney.
Joanne Kenen: Fox News’ “Male Health Care Leaders Complete ‘Simulated Breastfeeding Challenge’ at Texas Hospital: ‘Huge Eye-Opener’,” by Melissa Rudy.
Rachel Roubein: Stat’s “From Windows to Wall Art, Hospitals Use Virtual Reality to Design More Inclusive Rooms for Kids,” by Mohana Ravindranath.
Emmarie Huetteman: KFF Health News’ “The NIH Ices a Research Project. Is It Self-Censorship?” by Darius Tahir.
Also mentioned in this week’s episode:
- Politico’s “Abortion Rights Won Big in Ohio. Here’s Why It Wasn’t Particularly Close,” by Madison Fernandez, Alice Miranda Ollstein, and Zach Montellaro.
- KFF Health News’ “Seeking Medicare Coverage for Weight Loss Drugs, Pharma Giant Courts Black Influencers,” by Rachana Pradhan.
- Stat’s “Alarmed by Popularity of Ozempic and Wegovy, Insurers Wage Multi-Front Battle,” by Elaine Chen.
click to open the transcript
Transcript: On Abortion Rights, Ohio Is the New Kansas
KFF Health News’ ‘What the Health?’Episode Title: On Abortion Rights, Ohio Is the New KansasEpisode Number: 309Published: Aug. 10, 2023
[Editor’s note: This transcript, generated using transcription software, 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 a day early this week, on Wednesday, Aug. 9, at 3:30 p.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hey, everybody.
Rovner: Rachel Roubein of The Washington Post.
Rachel Roubein: Hi, everybody.
Rovner: And my colleague and editor here at KFF Health News Emmarie Huetteman.
Emmarie Huetteman: Hey, everyone. Glad to be here.
Rovner: So later in this episode, we’ll have my interview with Kate McEvoy, executive director of the National Association of Medicaid Directors. She’s got her pulse on how that big post-public health emergency “Medicaid unwinding” is going. And she’ll share some of that with us. But first, this week’s news. I guess the biggest news of the week is out of Ohio, which, in almost a rerun of what happened in Kansas almost exactly a year ago, voters soundly defeated a ballot issue that would have made it harder for other voters this fall to reverse the legislature’s strict abortion ban. If you’re having trouble following that, so did they in Ohio. [laughs] This time, the fact that the abortion rights side won wasn’t as much of a surprise because every statewide abortion ballot question has gone for the abortion rights side since Roe v. Wade was overturned last year. What do we take away from Ohio? Other than it looked a lot like … the split looked a lot like Kansas. It was almost 60-40.
Kenen: It shows that there’s a coalition around this issue that is bigger than Democrat or Republican. Ohio was the classic swing state that has turned into a conservative Republican-voting state — not on this issue. This was clearly independents, moderate Republicans joined Democrats to … 60-40, roughly, is a pretty big win. Yes, we’ve seen it in other states. It’s still a pretty big win.
Roubein: I agree. And I think one of my colleagues, Patrick Marley, and I spent some time just driving around and traveling Ohio in July. And one of the things that we did find is that — this ballot measure to increase the threshold for constitutional amendments is 60% — it had in some, in many, ways turned into a proxy war over abortion. But, in some ways, both sides also didn’t talk about abortion when they were, you know, canvassing different voters. You know, they use different tools in the toolbox. I was following around someone from Ohio Right to Life and, you know, he very much said, “Abortion is the major issue to me.” But, you know, they tried to kind of bring together the side that supported this. Other issues like legalizing marijuana and raising the minimum wage, and, you know, the abortion rights side was very much a part of, you know, the opposition here. But when some canvassers went out — my colleague Patrick had traveled and followed some, and some, you know, kind of focused on other issues like, you know, voters having a voice in policy and keeping a simple majority rule.
Rovner: Yeah, I think it’s important — for those who have not been following this as closely as we have — what the ballot measure was was to make future ballot measures — and they said they were not going to have them in August anymore, which, this was the last one — in order to amend the constitution by referendum, you would need a 60% majority rather than a 50% majority. And just coincidentally, there is an abortion ballot measure on Ohio’s ballot for November, and it’s polling at about 58%. But, yes, this would have applied to everything, and it was defeated.
Kenen: And it’s part of a larger trend. It began before the overturning of Roe v. Wade. Over the last couple of years, you’ve seen conservative states move to tighten these rules for ballot initiatives. And that’s because more liberal positions have been winning. I mean, Medicaid, the Medicaid expansion on the ballot, has won, and won big. Only one was even close …
Rovner: In very red states!
Kenen: They often won very big in a number of very, very conservative states, places like Idaho and Nebraska. So, you know, there’s always been … the conventional wisdom is that, you know, the political parties are more extreme than many voters, that the Democratic Party is for the left and the Republican Party is for the right. And there are a lot of people who identify with one party or the other but aren’t … who are more moderate or, in this case, more liberal on Medicaid. And Medicaid … what was it, seven states? I think it’s seven. Seven really conservative states. And then the abortion has won in every single state. And there’s a little bit of conversation and it’s … very early. And I don’t know if it’s going to go anywhere, but if I’ve heard it and written a bit about it, conservative lawmakers have heard about it, too, which is there are groups interested in trying to get some gun safety initiatives on ballots. So that’s complicated. And it may not happen. But they’re seeing, I mean, that’s the classic example of both a criminal justice and a public health issue — so we can talk about it — a classic example where the country is much more in the center.
Rovner: Well, let us move to Texas, because that’s where we always end up when we talk about abortion. You may remember that lawsuit where several women who nearly died from pregnancy complications sued the state to clarify when medical personnel are able to intercede without being subjected to fines and/or jail sentences. Well, the women won, at least for a couple of days. A Texas district judge who heard the case ruled in their favor, temporarily blocking the Texas ban for women with pregnancy complications. But then the state appealed, and a Texas appeals court blocked the lower-court judge’s blocking of part of the ban. If you didn’t follow that, it just means that legally nothing has changed in Texas. And now the case goes to the Texas Supreme Court, which has a conservative majority. So we pretty much know what’s going to happen. But whether these women ultimately win or lose their case may not be the most important thing. And, to explain why I’m going to do my extra credit early this week. It’s by my KFF Health News colleague Sarah Varney. It’s called “How the Texas Trial Changed the Story of Abortion Rights in America.” She writes that this trial was particularly significant because it put abortion foes on the defensive by graphically depicting harm to women of abortion bans — rather than to fetuses. And it’s also about the power of people publicly telling their stories. I’ve done a lot of stories over the years about women whose very wanted pregnancies went very wrong, very late. And, I have to tell you, it’s been hard to find these women. And when you find them, it’s been really hard to get them to talk to a journalist. So, the fact that we’re seeing more and more people actually come out publicly, you know, may do for this issue what, you know, perhaps what gay rights, you know, what people coming out as gay did for gay marriage? I don’t know. What do you guys think?
Kenen: Well, I think these stories have been really compelling, but they’re also, they’re the most dramatic and maybe easiest to push back. But it’s, you know, there’s a whole lot of other reasons women want abortions. And the focus — and it’s life and death, so the focus, quite rightfully, has to be on these really extreme cases. But that’s not … it’s still in some ways shifting attention from the larger political discussion about choice and rights. But, clearly, some of these states, we’ve seen so many stories of women who, their lives are at stake, their doctors know it, and they just don’t think they have the legal power; they’re afraid of the consequences if they’re second-guessed. There are tremendous financial and imprisonment [risks] for a doctor who is deemed to have done an unnecessary abortion. And this idea that’s taken hold … among some conservatives is that there’s never a need for a medical abortion. And that’s just not true.
Rovner: And yet, I mean, what this trial and a lot of things in Sarah’s piece too point out is that that line between miscarriage and abortion is really kind of fuzzy in a lot of cases. You know, if you go to the hospital with a miscarriage and they’re going to say, “Well, did you initiate this miscarriage?” And we’ve seen women thrown in jail before for losing pregnancies, with them saying, “You know, you threw yourself down the stairs to end this pregnancy.” That actually happened, I think it was in Indiana. So this is —
Kenen: And miscarriage is very common.
Rovner: That was what I was saying.
Kenen: Early miscarriage is very common. Very, very common.
Huetteman: One of the things that’s so striking about the past year, since Dobbs overturned Roe v. Wade ,is that we’ve seen this kind of national education about what pregnancy is and how dangerous it can be and how care needs to really be flexible to meet those sorts of challenges. And this actually got me thinking about something that another familiar voice on this podcast, Alice Miranda Ollstein, and some colleagues wrote this morning about the Ohio outcome, which is they pointed out that the anti-abortion movement really hasn’t evolved in terms of the arguments that they’re making in the past year about why abortion should continue to be less and less available. Meanwhile, we’ve got these, like, really incredible, really emotional, moving stories from women who have experienced this firsthand. And that’s a hard message to overcome when you’re trying to reach voters in particular.
Rovner: And it’s interesting; both sides like to take — you know, they all go to the hardest cases. So, for years and years, the anti-abortion side has, you know, has gone to the hardest cases. And that’s why they talk about abortion in the ninth month up till birth, which isn’t a thing, but they talk about it. And you know, now the abortion rights side has some hard cases now that abortions are harder to get. Well, while we are on the subject of Texas lawsuits, States Newsroom — and thank you for sending this my way, Joanne — has a story reporting that the publisher of the scientific paper that both the lower court judge and the appeals court judges used to conclude that the abortion drug mifepristone causes frequent complications — it does not — is being reviewed for potential scientific misconduct. The paper comes from the Charlotte Lozier Institute, which is the research arm of the anti-abortion group the Susan B. Anthony List. Sage, which is the publisher of the journal that the paper appeared in, has posted something called an expression of concern, saying that the publisher and editor, quote, “were alerted to potential issues regarding the representation of data in the article and author conflicts of interest. SAGE has contacted the authors of this article and an investigation is underway.” This was sort of a whistleblower by a pharmacist who looked at the way the data in this paper was put together and says, “No, that’s really very misleading.” I don’t think I’ve ever seen this, though; I’ve never seen a scientific paper that’s now being questioned for its political bent, a peer-reviewed scientific paper. I mean, this could change a lot of things, couldn’t it?
Kenen: Well, not if people decide that they still think it’s true. I mean, look at — you know, the vaccine autism paper was retracted. That wasn’t initially political. It’s become more political over the years; it wasn’t political at the time. That was retracted. And people have been jumping up and down screaming, “It was retracted! It was retracted!” And, you know, millions of people still believe it. So, I mean, legally, I’m not sure how much it changes. I mean, I thought we had all heard that there were flaws in this study. This article was good because I hadn’t been aware of how deeply flawed and in all the many ways it was flawed. And also the whistleblower yarn was interesting. I’m not sure how much it changes anything.
Rovner: Well, I’m thinking not in terms of this case. And by the way, I think we didn’t say this, that the study was of emergency room visits by women who’d had either surgical or medical abortions. And the contention was that medical abortions were more dangerous than surgical abortions because more women ended up in the emergency room. But as several people have pointed out, more people ended up in the emergency room after medical abortions because there have been so many more medical abortions over the years. I mean, you don’t actually have to be a data scientist to see some of the problems.
Kenen: Right. And some of them also weren’t that — really, were nervous, and they didn’t know what was normal and they went to the ER because they were scared and they really were safe. They were not — they didn’t need — you know, they just weren’t sure how much pain and discomfort or bleeding you’re supposed to have. And they went and they were reassured and were sent home. So it’s not even that they really had a medical emergency or that they were harmed.
Rovner: Or that they had a complication.
Kenen: Right. There were many flaws pointed out with this research.
Rovner: But my broader question is, I mean, if people are going to start questioning the politics of scientific papers, I mean, I could see the other side going after this.
Kenen: Well, there’s climate science, too, that’s bad. I mean, I don’t think this is actually unique. I think it’s egregious. But there were studies minimizing the risk of smoking, which was also a political business, commercial. Climate is certainly political. I mean, I think this is sort of the most politicized and most acute example, but I don’t think it’s the only one.
Roubein: And I think, Julie, as you’d mentioned, I think when [U.S. District Judge] Matthew Kacsmaryk in Texas came down with his decision — you know, for instance, there are media outlets — that my colleagues at the Post did a story just kind of unpacking some of the kind of flaws and some of the studies that were used to make, you know, a court decision.
Rovner: Yeah, to give the judge what he assumes to be evidence that this is a dangerous drug. So it’s — yeah.
Kenen: Which he came in believing, we know, from the profiles of him and his background.
Rovner: Right. All right, well, let us move on. The official Census Bureau estimate of how many people lack health insurance won’t be out until next month. But the Department of Health and Human Services is out with a report based on that other big federal population survey that shows the uninsured rate early this year was at its lowest level since records started being kept, which I think was in the 1980s: 7.7%. Now, that’s clearly going to be the high point for the fewest number of people uninsured, at least for a while, because clearly not all of the millions of people who are losing or about to lose their Medicaid coverage are going to end up with other insurance. But I remember — Joanne, you will, too — when the rate was closer to 18% … was a huge news story, and the thing that triggered the whole health reform debate in the first place. I’m surprised that there’s been so little attention paid to this.
Kenen: Because, you know … [unintelligible] … it’s so yesterday. And also, as you alluded to, you know, we’re in the middle of the Medicaid unwinding. So the numbers are going up again now. And we don’t know. We know that it’s a couple of million people. I think 3 million might be the last —
Rovner: I think it’s 4 [million], it’s up to 4.
Kenen: Four, OK. And some of them will get covered again and some of them will find other sources of coverage. But right now, there’s an uptick, not a downtick.
Roubein: And I think when you look at just, like, estimates of what the insured and the uninsured rates would be in 2030, like, the CMS’ [Centers for Medicare & Medicaid Services] analysis, one of the other questions is, you know, whether the enhanced Obamacare subsidies continue past 2025. So there’s Medicaid and then there’s also some other kind of question marks and cliffs coming up on how and whether it will fluctuate.
Rovner: No, it’s worth watching. And remember, when the census numbers come out, those will be for 2022. Well, moving on, we have two stories this week looking at the potential cost of those breakthrough obesity drugs, but through two very different lenses. One is from my KFF Health News colleague Rachana Pradhan, details how the makers of the current “it” drug, Ozempic, which is Novo Nordisk, in an effort to get the votes to lift the Medicare payment ban on weight loss drugs, is quietly contributing large amounts of money to groups like the Congressional Black Caucus Foundation and the Congressional Hispanic Caucus Institute. It’s sort of a backdoor lobbying that’s pretty age-old, but that doesn’t mean it doesn’t work. The other story, by Elaine Chen at Stat, looks at how health insurers are pushing back hard against the off-label use of diabetes medications that also work to help people lose weight. They’re doing things like allowing the more expensive weight loss drugs only if people have tried and failed other methods or disallowing them if the other methods had been slightly successful. So, if you take a lesser drug and you lose enough weight, they won’t let you take the better drug because, look, you lost weight on the other drug. We’ve talked about this, obviously, before: These drugs, on the one hand, have the potential to make a lot of people both healthier and happier. There’s a study out this week that shows that Mounjaro, the Eli Lilly drug, actually reduces heart disease by 20%.
Kenen: In people who have heart disease.
Rovner: Right, in people who have heart disease.
Kenen: It’s not lowering everybody’s risk.
Rovner: But still, I mean, everybody’s — well, I mean, there are medical indications for using these drugs for weight loss. But if everybody who wants them could get them, it would literally break the bank. Nobody can afford to give everybody who’s eligible for these drugs these drugs. Is the winner here going to be the side with the most effective lobbying, or is that too cynical?
Huetteman: Isn’t that always the winner? Speaking of cynical.
Rovner: Yeah, in health care.
Kenen: Well, I mean, I also think there’s questions about, like, these drugs clearly are really wonderful for people who they were designed for; you don’t have to be on insulin. They’re having not just weight loss and diabetes. There are apparently cardiac and other — you know, these are probably really good drugs. But there are a lot of people who do not have diabetes or heart disease who want them because they want to lose 20 pounds. And some of them are being told you have to take it for the rest of your life. I mean, I just know this anecdotally, and I’m sure we all know it anecdotally.
Rovner: Right. It’s like statins.
Kenen: Yes.
Rovner: Or blood pressure medication. If you stop taking your blood pressure medication, your blood pressure goes back up.
Kenen: Right. So, I mean, should the goal for the weight loss be, “OK, this is going to help you take off that weight and then you’re going to have to maintain it through diet and exercise and healthy lifestyle,” blah, blah, blah, which is hard for people. We know that. Or are we putting healthy people on a really expensive drug that changes an awful lot of things about their body indefinitely? We don’t have safety data for lifelong use in otherwise healthy people. So, you know, I’m always a little worried because even the best clinical trial is small compared to the entire — it’s small and it’s time-limited. And maybe these drugs are going to turn out to be absolutely phenomenal and we’re going to all live another 20 healthy years. But maybe not, you know. Or maybe they’re going to be really great for a certain subpopulation, but, you know, we’re not going to want to put it in the water supply. So, I still think that there’s this sort of pell-mell rush. And I think it’s partly because there’s a lot of money at stake. And it’s also, like, most people who are overweight have tried to lose it, and it’s very difficult to lose and maintain weight. So, you know, people want an easier way to do it. And I think the other thing is right now it’s an injection. There are side effects for some people on discomfort. There probably will be an oral version, a pill, sometime fairly soon, which will open — you know, there are people who don’t want to take a shot who would take a pill. It also means you might be able to tell — I mean, I don’t know the science of the pills, but it would make sense to me that you could take a lower dose, you know, maybe ease into it without the side effects, or could you stay on it longer with fewer problems? I mean, we’re just the very beginning of this, but it’s a huge amount of money.
Rovner: Yeah. You could see — I mean, my big question, though, is why can’t we force the drugmakers to lower the price? That would, if not solve the problem, make it a lot better. I mean, really, we’re going to have to wait until there is generic competition?
Kenen: It’s not just this.
Rovner: Yeah.
Kenen: I mean, it’s all sorts of cancer treatments and it’s hepatitis treatments. And it’s, I mean, there’s a lot of expensive drugs out there. So, this one just has a lot of demand because it makes you skinny.
Rovner: Well, that was the thing. We went through this with the hepatitis C drugs, which were really super expensive. It’s much more like that.
Kenen: Well, they seemed super expensive at the time —
Rovner: Not so much anymore.
Kenen: — but maybe for a thousand dollars, in retrospect.
Rovner: All right. Well, let’s move on. So, speaking of powerful lobbies, let’s talk about hospitals. Iowa Republican Sen. Chuck Grassley and Massachusetts Democrat Elizabeth Warren — now, there is an unlikely couple — are among those asking the IRS to more carefully examine tax-exempt hospitals to make sure they’re actually benefiting the community in exchange for not paying taxes, which is supposed to be the deal. Now, Sen. Grassley has been on this particular hobbyhorse for many, many years, I think probably more than 20, but not much ever seems to come of this. I can’t tell you how many workshops I’ve been to on, you know, how to measure community benefits that tax-exempt hospitals are providing. Any inkling that this time is going to be any different?
Roubein: Well, hospitals don’t tend to be sort of the losers. They try and kind of frame themselves as, like, “We’re your sort of friendly neighborhood hospital,” and every — I mean, every congressman, most congressmen have, you know, hospitals in their district. So they they get lobbied a lot, though, you know — I mean, this is a different issue, but particularly on the House side, hospitals are facing site-neutral payments, which if that actually went through Congress would be a loss. So yeah, but lawmakers have found it in general hard to take on the hospital industry.
Rovner: Yeah, very much so.
Kenen: Yeah. I mean, I think that we think of nonprofits and for-profits as, they’re different, but they’re not as different as we think they are, in that, you know, nonprofits are getting a tax break and they have to reinvest their profits. But it doesn’t mean they’re not making a lot of money. Some of them are. I mean, some of them have, you know, we’ve all walked into fancy nonprofits with, you know, fancy art and marble floors and so on and so forth. And we’ve all been in nonprofits that are barely keeping their doors open. So it’s your tax status. It’s not really, you know, your ethical status or the quality of care. I mean, there’s good nonprofits, there’s good for-profits. You know, this whole thing is like, if I were a hospital, I would be getting this huge tax break, and what am I doing to deserve it? And that’s the question.
Rovner: And I think the argument is, you know, that the 7.7% uninsured we were talking about, that hospitals are supposed to be providing care as part of their community benefit that the federal government now is ending up paying for. I think that’s sort of the frustration. If nonprofit hospitals were doing what they were supposed to do, it would cost federal and state governments less money, which always surprises me because this is not gone after more. I mean, Grassley has spent his whole career working on various types of government fraud. So this is totally in line for him. But it’s never just seemed to be a big priority for any administration.
Huetteman: There’s a little bit of an X factor here. Look at the fact that Grassley and Warren are talking about this publicly now. Maybe I’m just really optimistic from all the journalism we’ve been doing about projects like “Bill of the Month.” But the reality is that a lot of people are now seeing reporting that’s showing to them what nonprofit hospitals are actually doing when it comes to pursuing patients who don’t pay bills. And what it means to have community benefit comes into question a lot when you talk about wage garnishment, suing patients who are low-income for their medical debt. These are things that journalists have uncovered over and over again, happening at — ding, ding, ding — nonprofit hospitals. It’s harder to argue that hospitals are just doing their best for people when you have these stories of poor people who are losing their homes over unpaid medical bills, for instance. And I think that right now, when we’re in this political moment where health care costs are so, so potent to people and so important, I mean, could we see that this will actually be more effective, that we’re heading towards something that’s more effective? Maybe.
Rovner: Well, repeats the journalist, as we all are, the power of storytelling. Definitely the public is primed. I imagine that’s why they’re doing it now. We’ll see what comes of it.
Kenen: think the public is primed for bad practices. I’m not sure how many patients understand if the hospital they go to is a nonprofit or a for-profit. I think the public understands that everything in health care costs too much and that there are bad actors and greed. There’s a difference between profit and greed, and I think many people would say that we’re now in an era of greed. And not everybody in the health care sector — before anybody calls us up and shouts, “Not everybody who provides care is greedy” — but we’ve seen, you know, it is clearly out there. You know, you had Zeke Emanuel on a couple of weeks ago. Remember what he said, that, you know, 10 years ago, some people still liked their health care and now nobody likes their health care, rich or poor.
Rovner: Yeah, he’s right. All right. Well, that is this week’s news. Now, we’ll play my interview with Kate McEvoy of the National Association of Medicaid Directors about how the Medicaid unwinding is going. And one note before you listen: Kate frequently refers to the federal CMCS, which is not a misspeak; it stands for the Center for Medicaid and CHIP Services, which is the branch of CMS, the Centers for Medicare & Medicaid Services, that deals with Medicaid. So, here’s the interview:
I am pleased to welcome to the podcast Kate McEvoy, executive director of the National Association of Medicaid Directors, which is pretty much exactly what the name says, a group where state Medicaid officials can share information and ideas. Kate, welcome to “What the Health?”
Kate McEvoy: Good afternoon. Thanks for having me.
Rovner: Obviously, the Medicaid unwinding, which we have talked about a lot on the podcast, is Topic A for your members right now. Remind us again which Medicaid recipients are having their coverage eligibility rechecked? It’s not just those in the expansion group from the Affordable Care Act, right?
McEvoy: It’s not, no. Each and every person served by the country nationwide has to be reevaluated from an eligibility standpoint this year.
Rovner: What do we know about how it’s going? We’re seeing lots of reports that suggest the vast majority of people losing coverage are for paperwork reasons, not because they’ve been found to be no longer eligible. I know you recently surveyed your members. What are they telling you about this?
McEvoy: So, I first want to say this is an unprecedented task and it’s obviously historically significant for everyone served by the program. The volume of the work, and also the complexity, makes it a challenging task for all states and territories. But what we are seeing to date is a few things. First, we have seen an incredible effort on the part of states and territories to saturate really every means of communicating with their membership, really getting out that message around connecting with the programs, especially if an individual has moved during the period of the pandemic, which is very typical for people served by Medicaid. So that saturation of messaging and use of new means of connecting with people, like texting, really does represent a tremendous advance for the Medicaid program that has traditionally relied on a lot of complex, formal, legal notices to people. So that seems like a very positive thing. What we are seeing, and this is not unexpected, is that, you know, for reasons related to complex life circumstances and competing considerations, many people are not responding to those notices, no matter how we are transmitting those messages. And so that is a piece that is of great interest and concern to all of us, notably Medicaid directors wanting to make sure that eligible folks do not lose coverage simply because they are not responsive to the requests for more information. So we’re at a point where we’re beyond that initial push around messaging and now are really focused on means of protecting people who remain eligible, either through automatic review of their eligibility — the ex parte process — or by restoring them through such means as reconsideration. That’s really the main focus right now.
Rovner: And there’s that 90-day reconsideration window. Is that … how does that work?
McEvoy: So the federal law gives this period of 90 days to families and children within which they can be renewed with very little effort, essentially removing the responsibility to complete a new application. We also have long-standing help to people called “presumptive eligibility.” So if someone goes to a federally qualified health center or, more unfortunately, goes to the hospital, many of those types of providers can restore someone’s eligibility. So those are important protective pieces. We also know from the survey that you mentioned of our membership that many states and territories are extending those reconsideration protections to all coverage groups — also including older adults and people with disabilities.
Rovner: So are there any states that are doing anything that’s different and innovative? I remember when CHIP [the federal Children’s Health Insurance Program] was being stood up — and boy, that was a long time ago, like 1999 — South Carolina put flyers in pizza boxes, and some other state put flyers in sneaker boxes for back-to-school stuff. Are there better ways to maybe get ahold of these people?
McEvoy: So I think the answer is: a lot of different channels. Our colleagues in Louisiana have a partnership with Family Dollar stores to essentially feature this information on receipts. There’s a lot of work at pharmacy counters. Some of the big chain pharmacies have QR codes and other means of prompting people around their Medicaid eligibility. There’s going to be a big push for the back-to-school effort. And I think CMS and states are really interested, particularly in ensuring that children do not lose coverage even if their parents have regained employment and they’re no longer eligible. Another thing that’s going on is a lot of innovation in the means of enabling access to information. So many states have put in place personal apps through which people can track their own eligibility. There’s interest and some uptake of the so-called pizza-tracker function — so you can kind of see where you’re situated in that pipeline — and also a lot of use of automation to help call people back if they’re trying to get to state call centers. So really, all of those types of strategies … we’re seeing a huge amount of effort across the country.
Rovner: How’s the cooperation going with the Department of Health and Human Services? I know that … they seem to be not happy with some states. Are they being helpful, in general?
McEvoy: They’re being extraordinarily helpful. I would say that we often talk about Medicaid representing a federal-state equity partnership, and we’ve seen that manifest from the beginning of the first notice of the certainty around the start of the unwinding. CMCS has consistently offered guidance to states. They work with states using a mitigation approach as opposed to moving rapidly to compliance. We feel mitigation is the best way of essentially working out the strategies that are going to best protect continuing eligibility for people at the state level. And we really appreciate CMS’ efforts on that. We understand they do have to ensure accountability across the country, and we’re mutually committed to that.
Rovner: You better explain mitigation strategies.
McEvoy: Yeah, so this is a year where we are calling the question on eligibility standards that help ensure that the pathway to Medicaid coverage is a smooth one, and also that there is continuity of coverage. So, for any state that wasn’t yet meeting all those standards, CMCS essentially entered into an agreement with the state or territory to say, here is how you will get there. And that could have involved some means of improving the automatic renewals for Medicaid. It could have meant relying on an integrated eligibility processes. There are a lot of different tools and strategies that were put in place, but essentially that is a path to every state and territory coming into full compliance.
Rovner: Is there anything unexpected that’s happening? I know so much of this was predicted, and it was predicted that the states that went first that, you know, were really in a hurry to get extra people off of their rolls seem to be doing just that: getting extra people off of their rolls. Are you surprised at the differences among states?
McEvoy: I think that there have definitely been differences among states in terms of the tools they have used from a system standpoint, but I don’t see any differences in terms of retention of eligible people. That remains a shared goal across the entire country. And again, this is a watershed point where we have the opportunity to bring everyone to the same standards, ongoing, so that we help to prevent some of the heartache of the eligibility process for folks ongoing.
Rovner: Anything else I didn’t ask?
McEvoy: Well, I think that piece around the reconsideration period is particularly important. We are struck by there being probably less literacy around that option, and that’s something we want to continue to promote. The other piece I’d wind up by saying is that the Medicaid program is always available for people who are eligible. So in the worst-case scenario in which an otherwise eligible person loses coverage, they can always come back and be covered. This is in contrast to private insurance that may have an annual open enrollment period. Medicaid, as you know, is available on a rolling basis, and we want to keep reinforcing that theme so that no one goes with a gap in coverage.
Rovner: Kate McEvoy, thank you very much. And I hope we can call you back in a couple of months.
McEvoy: I would be very happy to hear from you.
Rovner: OK. We are back and 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. I did mine already. Emmarie, why don’t you go next?
Huetteman: My story this week comes from KFF Health News, my colleague Darius Tahir. He has a story called “The NIH Ices a Research Project. Is It Self-Censorship?” Now, the story talks about the fact that the former head of NIH Francis Collins, was, as he was leaving, announcing an effort to study health communications. And we’re talking about not just doctor-to-patient communications, but actually also how mass communications impact American health. But as Darius found out, the acting director quietly ended the program as NIH was preparing to open its grant applications. And officials who spoke with us said that they think political pressure over misinformation is to blame. Now, we don’t have to look too far for examples of conservative pressure over misinformation and information these days. In particular, there’s a notable one from just last month out of a Louisiana court, the federal court decision that blocked government officials from communicating with social media companies. You really don’t have to look too far to see that there’s a chilling effect on information. And we’re talking about the NIH was going to study or rather fund studies into communication and information. Not misinformation, information: how people get information about their health. So it’s a pretty interesting example and a really great story worth your read.
Rovner: And I’ve done nothing but preach about public health communication for three years now.
Kenen: It’s a very good story.
Rovner: Yeah, it was a really good story. Rachel, you’re next.
Roubein: All right. This story is called “From Windows to Wall Art, Hospitals Use Virtual Reality to Design More Inclusive Rooms for Kids,” by Stat News, by Mohana Ravindranath. And I thought this story was really interesting because she kind of dived into what Mohana called “a budding movement to make architecture more inclusive” for the people and patients who are spending a lot, a lot of time in hospital walls. And what some researchers are doing is using virtual reality to essentially gauge how comfortable children who are patients are in hospital rooms. And she talked to researchers at Berkeley who were using these, like, virtual reality headsets to kind of study and explore mocked-up hospital rooms. And, I didn’t know a ton about this field. I mean, apparently it’s not new, but it’s this kind of growing sort of movement to make patients more comfortable in the space that they’re inhabiting for perhaps long periods of time.
Rovner: I went to a conference on architecture, hospital architecture, making it more patient-centered, 10 years ago. But my favorite thing that I still remember from that is they talked about putting art on the ceiling because people are either in bed or they’re in gurneys. They’re looking up at the ceiling a lot. And ceilings are scary in hospitals. So that was one of the things that I took away from that. OK, Joanne, now it’s your turn.
Kenen: OK. This is from Fox News. And yes, you did hear that right. It’s by Melissa Rudy, and the headline is “Male Health Care Leaders Complete ‘Simulated Breastfeeding Challenge’ at Texas Hospital: ‘Huge Eye-Opener’.” So at Covenant Health, they had a bunch of high-level guys in suits pretend they were nursing and/or pumping mothers, and they had to nurse every three hours for 20 minutes at a time. And they found it was quite difficult and quite cumbersome and they didn’t have enough privacy. And as one of them said, “There was no way to multitask.” But trust me, if you have two kids, you have to figure that out, too. So it was a really good story.
Rovner: Some of these things that we feel like should be required everywhere, but it was a great read; it was a really good story. OK, that is 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 us a review; that helps other people find us too. Special thanks this week to Zach Dyer, sitting in for the indefatigable Francis Ying. And as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me or X me or whatever; I’m @jrovner. And also on Bluesky and Threads. Rachel?
Roubein: @rachel_roubein — that’s on Twitter.
Rovner: Joanne.
Kenen: In most places I’m @JoanneKenen. On Threads, I’m @joannekenen1.
Rovner: Emmarie.
Huetteman: And I am @emmarieDC.
Rovner: We will be back in your feed next week. Until then, be healthy.
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Mujeres negras sopesan riesgos emergentes de alisadores para el cabello “adictivos”
Deanna Denham Hughes quedó en shock cuando le diagnosticaron cáncer de ovario el año pasado. Solo tenía 32 años. No había antecedentes familiares, y las pruebas no encontraron ningún vínculo genético. Hughes se preguntó por qué ella, una madre negra saludable de dos hijos, desarrollaría una enfermedad conocida como el “asesino silencioso”.
Tras una cirugía de emergencia para extirpar el tumor, junto con sus ovarios, útero, trompas de Falopio y apéndice, Hughes contó que vio una publicación en Instagram en la que una mujer con cáncer uterino relacionaba su condición con alisadores químicos para el cabello.
“Casi me desmayo”, dijo desde su casa en Smyrna, Georgia.
Cuando tenía unos 4 años, su madre comenzó a aplicarle un alisador químico, o “relajante”, en el cabello cada seis u ocho semanas. “Quemaba y olía terrible”, recordó Hughes. “Pero era parte de nuestra rutina para ‘lidiar con mi cabello'”.
La rutina continuó hasta que fue a la universidad y conoció a otras mujeres negras que llevaban el cabello de forma natural. Pronto, Hughes dejó de usar alisadores.
Las presiones sociales y económicas han llevado durante mucho tiempo a las niñas y mujeres negras a alisar su cabello para cumplir con los estándares de belleza eurocéntricos. Pero los alisadores químicos tienen un olor desagradable, son costosos y a veces causan quemaduras dolorosas en el cuero cabelludo. Y ahora hay cada vez más evidencia de que podrían ser un riesgo para la salud.
Los alisadores pueden contener carcinógenos, como agentes liberadores de formaldehído, ftalatos y otros compuestos que alteran el sistema endócrino, según estudios de los Institutos Nacionales de Salud. Estas sustancias químicas pueden imitar las hormonas del cuerpo y se han vinculado con cánceres de seno, útero y ovario, muestran investigaciones.
Investigadores y médicos especializados en cáncer dicen que la aplicación frecuente y de por vida de alisadores químicos en el cabello y el cuero cabelludo de mujeres afroamericanas podría explicar por qué los cánceres relacionados con hormonas afectan de manera desproporcionada a mujeres negras en comparación con mujeres blancas.
“Lo que hay en estos productos es perjudicial”, dijo Tamarra James-Todd, profesora de epidemiología en la Escuela de Salud Pública T.H. Chan de Harvard, quien ha estudiado productos alisadores por los últimos 20 años.
James-Todd cree que los fabricantes, legisladores y médicos deberían advertir a los consumidores que los alisadores podrían causar cáncer y otros problemas de salud. Pero los reguladores han sido lentos en actuar, los médicos se han mostrado reacios a tomar la causa, y el racismo continúa dictando los estándares de moda que dificultan que las mujeres dejen los alisadores, productos tan adictivos que son conocidos como “crema adictiva” (“creamy crack”).
Michelle Obama alisó su cabello cuando Barack era presidente porque creía que los estadounidenses “no estaban preparados” para verla con trenzas, dijo la ex primera dama después de dejar la Casa Blanca. El ejército de los Estados Unidos todavía prohibía estilos populares de cabello negro, como rastas y trenzas, mientras el primer presidente negro del país estaba en el cargo.
En 2019, California se convirtió en el primer estado de casi 20 en prohibir la discriminación basada en el cabello. El año pasado, la Cámara de Representantes de los Estados Unidos aprobó una legislación similar, conocida como la Ley CROWN (Creating a Respectful and Open World of Natural Hair). Sin embargo, el proyecto de ley fracasó en el Senado.
La necesidad de legislación destaca los desafíos que enfrentan las niñas y mujeres negras en la escuela y en el lugar de trabajo.
“Tienes que elegir tus batallas”, dijo Ryland Gore, cirujana oncológica con sede en Atlanta. Gore informa a sus pacientes con cáncer de mama sobre el mayor riesgo de cáncer debido a los alisadores. A pesar de su conocimiento, Gore continúa usando alisadores químicos en su propio cabello, como lo ha hecho desde que tenía unos 7 años.
“Tu cabello cuenta una historia”, dijo.
En las conversaciones con sus pacientes, Gore a veces también habla sobre cómo las mujeres afroamericanas solían tejer mensajes en sus trenzas sobre la ruta a seguir en el Underground Railroad mientras buscaban la libertad de la esclavitud.
“Es simplemente una discusión profunda”, que abarca cultura, historia e investigación sobre las prácticas de estilo de peinados actuales, dijo. “Los datos están ahí fuera. Por lo tanto, se les debe advertir a los pacientes, y luego pueden tomar una decisión”.
La primera pista de una conexión entre los productos para el cabello y problemas de salud surgió en la década de 1990. Los médicos comenzaron a ver signos de madurez sexual en bebés y niñas negras que desarrollaban senos y vello púbico después de usar champús que contenían estrógeno o extracto placentario. Cuando las niñas dejaban de usar el champú, el desarrollo del cabello y los senos retrocedían.
Desde entonces, James-Todd y otros investigadores han vinculado compuestos químicos en productos para el cabello con una variedad de problemas de salud más prevalentes entre las mujeres negras, desde la pubertad temprana hasta el parto prematuro, la obesidad y la diabetes.
En los últimos años, los investigadores se han enfocado en una posible conexión entre los alisadores químicos y los cánceres relacionados con hormonas, como el que desarrolló Hughes, que tienden a ser más agresivos y mortales en las mujeres negras.
Un estudio de 2017 encontró que las mujeres blancas que usaban alisadores químicos tenían casi el doble de probabilidades de desarrollar cáncer de seno que aquellas que no los usaban. Debido a que la gran mayoría de las participantes negras del estudio usaban alisadores, los investigadores no pudieron probar efectivamente la asociación en mujeres negras, según afirmó la autora principal, Adana Llanos, profesora asociada de epidemiología en la Escuela de Salud Pública Mailman de la Universidad de Columbia.
Los investigadores lo probaron en 2020.
El llamado Sister Study (Estudio de las Hermanas), una importante investigación del Instituto Nacional de Ciencias de la Salud Ambiental sobre las causas del cáncer de mama y enfermedades relacionadas, hizo el seguimiento de 50,000 mujeres estadounidenses cuyas hermanas habían sido diagnosticadas con cáncer de mama y que estaban libres de cáncer cuando se inscribieron. Independientemente de la raza, las mujeres que informaron haber usado alisadores en el año anterior tenían un 18% más de probabilidades de ser diagnosticadas con cáncer de mama. Aquellas que usaron alisadores al menos cada cinco a ocho semanas tenían un 31% más de riesgo de ese cáncer.
Casi el 75% de las hermanas negras usaron alisadores en el año anterior, en comparación con solo el 3% de las hermanas blancas no hispanas. Tres cuartas partes de las mujeres negras también informaron haber usado alisadores cuando eran adolescentes, y el uso frecuente de alisadores químicos durante la adolescencia aumentó el riesgo de cáncer de mama premenopáusico.
En 2021, un análisis de los datos del Sister Study mostró que las hermanas que usaban frecuentemente alisadores o productos para el alisado tenían el doble de riesgo de cáncer de ovario. Otro análisis, en 2022, encontró que el uso frecuente aumentaba en más del doble el riesgo de cáncer de útero.
Después de que los investigadores descubrieron la relación con el cáncer de útero, algunos pidieron cambios en las políticas y otras medidas para reducir la exposición a los alisadores.
“Es hora de intervenir”, escribió Llanos y sus colegas en un editorial que acompañó el análisis del cáncer de útero. Aunque reconocen la necesidad de más investigaciones, lanzaron un “llamado a la acción”.
Nadie puede afirmar que el uso de alisadores permanentes causará cáncer, dijo Llanos en una entrevista. “Así no funciona el cáncer”, dijo, señalando que algunos fumadores nunca desarrollan cáncer de pulmón, a pesar de que el tabaquismo es un factor de riesgo conocido.
El corpus de investigación sobre los alisadores para el cabello y el cáncer es más limitado, dijo Llanos, quien dejó de usar alisadores químicos hace 15 años. Pero preguntó retóricamente: “¿Necesitamos investigar durante otros 50 años para saber que los alisadores químicos son perjudiciales?”.
Charlotte Gamble, ginecóloga oncológica cuya práctica en Washington, D.C., incluye a mujeres negras con cáncer de útero y ovario, dijo que ella y sus colegas ven los hallazgos del estudio sobre el cáncer de útero como dignos de una exploración más profunda, pero aún no deberían discutirse con los pacientes.
“Aún tengo mis dudas”, dijo. “Se necesita mucha más información”.
Mientras tanto, James-Todd y otros investigadores creen que han construido un sólido corpus de evidencia.
“Hay suficientes cosas que sí sabemos como para comenzar a tomar medidas, desarrollar intervenciones, proporcionar información útil a los médicos, pacientes y al público en general”, dijo Traci Bethea, profesora asistente en la Oficina de Salud de las Minorías e Investigación sobre Disparidades en Salud de la Universidad de Georgetown.
La responsabilidad de regular los productos de cuidado personal, incluidos los alisadores químicos para el cabello y las tinturas, que también se han vinculado con cánceres relacionados con hormonas, recae en la Administración de Alimentos y Medicamentos (FDA).
Sin embargo, la FDA no somete los productos de cuidado personal al mismo proceso de aprobación que utiliza para alimentos y medicamentos. La FDA solo restringe 11 categorías de productos químicos utilizados en cosméticos, mientras que las preocupaciones sobre los efectos en la salud han llevado a la Unión Europea a restringir al menos 2,400 sustancias.
En marzo, las representantes Ayanna Pressley (demócrata de Massachusetts) y Shontel Brown (demócrata de Ohio) pidieron a la FDA que investigara la posible amenaza para la salud que representan los alisadores químicos. Un representante de la FDA dijo que la agencia lo investigaría.
Los peinados naturales están resurgiendo entre las niñas y mujeres negras, pero muchas siguen dependiendo de la “crema adictiva”, según Dede Teteh, profesora asistente de salud pública en la Universidad Chapman.
Teteh tuvo su primer alisado permanente a los 8 años y ha luchado por dejar los alisadores de adulta. Ahora usa trenzas estilo “locs”. Hace poco, consideró alisarse químicamente el cabello para una entrevista de trabajo académica porque no quería que su cabello “fuera un obstáculo” cuando se presentara ante profesores blancos.
Teteh lideró un proyecto de investigación sobre la salud del cabello llamado “The Cost of Beauty” (El Costo de la Belleza) publicado en 2017. Ella y su equipo entrevistaron a 91 mujeres negras en el sur de California. Algunas reaccionaron de manera “combativa” ante la idea de dejar los alisadores y afirmaron que “todo puede causar cáncer”.
Sus reacciones reflejan los desafíos que enfrentan las mujeres negras en Estados Unidos, dijo Teteh.
“No es que la gente no quiera escuchar información relacionada con su salud”, dijo. “Pero quieren que la información se comparta de manera empática con la difícil situación de ser negra aquí en los Estados Unidos”.
Kara Nelson de KFF Health News colaboró con este informe.
Este artículo fue producido por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.
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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