KFF Health News' 'What the Health?': Another Try for Mental Health ‘Parity’
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.
The Biden administration continued a bipartisan, decades-long effort to ensure that health insurance treats mental illnesses the same as other ailments, with a new set of regulations aimed at ensuring that services are actually available without years-long waits or excessive out-of-pocket costs.
Meanwhile, two more committees in Congress approved bills this week aimed at reining in the power of pharmacy benefit managers, who are accused of keeping prescription drug prices high to increase their bottom lines.
This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Sarah Karlin-Smith of the Pink Sheet.
Panelists
Anna Edney
Bloomberg
Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Sarah Karlin-Smith
Pink Sheet
Among the takeaways from this week’s episode:
- The Biden administration’s new rules to enforce federal mental health parity requirements include no threat of sanctions when health plans do not comply; noncompliance with even the most minimal federal rules has been a problem dating to the 1990s. Improving access to mental health care is not a new policy priority, nor a partisan one, yet it remains difficult to achieve.
- With the anniversary of the 988 Suicide & Crisis Lifeline, more people are becoming aware of how to access help and get it. Challenges remain, however, such as the hotline service’s inability to connect callers with local care. But the program seizes on the power of an initial connection for someone in a moment of crisis and offers a lifeline for a nation experiencing high rates of depression, anxiety, and suicide.
- In news about the so-called Medicaid unwinding, 12 states have paused disenrollment efforts amid concerns they are not following renewal requirements. A major consideration is that most people who are disenrolled would qualify to obtain inexpensive or even free coverage through the Affordable Care Act. But reenrollment can be challenging, particularly for those with language barriers or housing insecurity, for instance.
- With a flurry of committee activity, Congress is revving up to pass legislation by year’s end targeting the role of pharmacy benefit managers — and, based on the advertisements blanketing Washington, PBMs are nervous. It appears legislation would increase transparency and inform policymakers as they contemplate further, more substantive changes. That could be a tough sell to a public crying out for relief from high health care costs.
- Also on Capitol Hill, far-right lawmakers are pushing to insert abortion restrictions into annual government spending bills, threatening yet another government shutdown on Oct. 1. The issue is causing heartburn for less conservative Republicans who do not want more abortion votes ahead of their reelection campaigns.
- And the damage to a Pfizer storage facility by a tornado is amplifying concerns about drug shortages. After troubling problems with a factory in India caused shortages of critical cancer drugs, decision-makers in Washington have been keeping an eye on the growing issues, and a response may be brewing.
Also this week, Rovner interviews KFF Health News’ Céline Gounder about the new season of her “Epidemic” podcast. This season chronicles the successful public health effort to eradicate smallpox.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: The Nation’s “The Anti-Abortion Movement Gets a Dose of Post-Roe Reality,” by Amy Littlefield.
Joanne Kenen: Food & Environment Reporting Network’s “Can Biden’s Climate-Smart Agriculture Program Live Up to the Hype?” by Gabriel Popkin.
Anna Edney: Bloomberg’s “Mineral Sunscreens Have Potential Hidden Dangers, Too,” by Anna Edney.
Sarah Karlin-Smith: CNN’s “They Took Blockbuster Drugs for Weight Loss and Diabetes. Now Their Stomachs Are Paralyzed,” by Brenda Goodman.
Also mentioned in this week’s episode:
- CNN’s “Medicaid Disenrollments Paused in a Dozen States After Failure to Comply With Federal Rules,” by Tami Luhby.
- Abortion, Every Day’s “Why Are OBGYNs Being Forced to Go to Texas?” by Jessica Valenti.
- Politico’s “GOP Looks to Spending Fights for Wins on Abortion, Trans Care, Contraception,” by Alice Miranda Ollstein.
- KFF Health News’ “A Year With 988: What Worked? What Challenges Lie Ahead,” by Colleen DeGuzman.
click to open the transcript
Transcript: Another Try for Mental Health ‘Parity’
KFF Health News’ ‘What the Health?’Episode Title: Another Try for Mental Health ‘Parity’Episode Number: 307Published: July 27, 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 this week on Thursday, July 27, 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 Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hi, everybody.
Rovner: Sarah Karlin-Smith, the Pink Sheet.
Sarah Karlin-Smith: Hi, Julie.
Rovner: And Anna Edney of Bloomberg News.
Edney: Hello.
Rovner: Later in this episode, we’ll have my interview with my KFF colleague Céline Gounder about the new season of her podcast “Epidemic,” which tracks one of the last great public health success stories, the eradication of smallpox. But first, this week’s news. I want to start this week with mental health, which we haven’t talked about in a while — specifically, mental health parity, which is both a law and a concept, that mental ailments should be covered and reimbursed by health insurance the same way as a broken bone or case of pneumonia or any other — air quotes — “physical ailment.” Policymakers, Republican and Democrat, and the mental health community have been fighting pretty much nonstop since the mid-1990s to require parity. And despite at least five separate acts of Congress over that time — I looked it up this week — we are still not there yet. To this day, patients with psychiatric illnesses find their care denied reimbursement, made difficult to access, or otherwise treated as lesser. This week, the Biden administration is taking another whack at the issue, putting out proposed rules it hopes will start to close the remaining parity gap, among other things by requiring health plans to analyze their networks and prior authorization rules and other potential barriers to care to ensure that members actually can get the care they need. What I didn’t see in the rules, though, was any new threat to sanction plans that don’t comply — because plans have been not complying for a couple of decades now. How much might these new rules help in the absence of a couple of multimillion-dollar fines?
Edney: I had that same question when I was considering this because I didn’t see like, OK, like, great, they’re going to do their self-policing, and then what? But I do think that there’s the possibility, and this has been used in health care before, of public shaming. If the administration gets to look over this data and in some way compile it and say, here’s the good guys, here’s the bad guys, maybe that gets us somewhere.
Rovner: You know, it strikes me, this has been going on for so very long. I mean, at first it was the employer community actually that did most of the negotiating, not the insurers. Now that it’s required, it’s the insurers who are in charge of it. But it has been just this incredible mountain to scale, and nobody has been able to do it yet.
Kenen: And it’s always been bipartisan.
Rovner: That’s right.
Kenen: And it really goes back to mostly, you know, the late Sen. [Paul] Wellstone [(D-Minn.)] and [Sen. Pete] Domenici [(R-N.M.)], both of whom had close relatives with serious mental illness. You know, Domenici was fairly conservative and traditional conservative, and Wellstone was extremely liberal. And they just said, I mean, this — the parity move began — the original parity legislation, at least the first one I’m aware of. And it was like, I think it was before I came to Washington. I think it was in the ’80s, certainly the early — by the ’90s.
Rovner: It was 1996 when when the first one actually passed. Yeah.
Kenen: I mean, they started talking about it before that because it took them seven or eight years. So this is not a new idea, and it’s not a partisan idea, and it’s still not done. It’s still not there.
Edney: I think there’s some societal shift too, possibly. I mean, we’re seeing it, and maybe we’re getting closer. I’ve seen a lot of billboards lately. I’ve done some work travel. When I’m on the road, I feel like I’m always seeing these billboards that are saying mental health care is health care. And trying to hammer that through has really taken a long time.
Rovner: So while we are on the subject of mental health, one of the good things I think the government has done in the last year is start the 988 Suicide & Crisis Lifeline, which turned 1 this month. Early data from shifting the hotline from a 10-digit number to a three-digit one that’s a lot easier to remember does suggest that more people are becoming aware of immediate help and more people are getting it. At the same time, it’s been able to keep up with the demand, even improving call answering times — I know that was a big concern — but there is still a long way to go, and this is hardly a panacea for what we know is an ongoing mental health crisis, right?
Karlin-Smith: This is a good first step to get people in crisis help without some of the risks that we’ve seen. If you go towards the 911 route, sometimes police are not well trained to handle these calls and they end in worse outcomes than necessary. But then you have to have that second part, which is what we were talking about before, which is the access to the longer-term mental health support to actually receive the treatment you need. There’s also some issues with this hotline going forward in terms of long-term funding and, you know, other tweaks they need to work out to make sure, again, that people who are not expecting to interact with law enforcement actually don’t end up indirectly getting there and things like that as well.
Kenen: Do any of you know whether there’s discussion of sort of making people who don’t remember it’s 988 and they call 911 — instead of dispatching cops, are the dispatchers being trained to just transfer it over to 988?
Rovner: That I don’t know.
Kenen: I’m not aware of that. But it just sort of seems common sense.
Rovner: One thing I know they’re working on is, right now I think there’s no geolocation. So when you call 988, you don’t necessarily get automatically referred to resources that are in your community because they don’t necessarily know where you’re calling from. And I know that’s an effort. But yeah, I’m sure there either is or is going to be some effort to interact between 988 and 911.
Kenen: It’s common sense to us. It doesn’t mean it’s actually happening. I mean, this is health care.
Rovner: As we point out, this is mental health care, too.
Kenen: Yeah, right.
Rovner: It’s a step.
Kenen: But I think that, you know, sort of the power of that initial connection is something that’s easy for people to underestimate. I mean, my son in college was doing a helpline during 2020-2021. You know, he was trained, and he was also trained, like, if you think this is beyond what a college-aged volunteer, that if you’re uncertain, you just switched immediately to a mental health professional. But sometimes it’s just, people feel really bad and just having a voice gets them through a crisis moment. And as we all know, there are a lot of people having a lot of crisis moments. I doubt any of us don’t know of a suicide in the last year, and maybe not in our immediate circle, but a friend of a friend, I mean, or, you know — I know several. You know, we are really at a moment of extreme crisis. And if a phone call can help some percentage of those people, then, you know, it needs to be publicized even more and improved so it can be more than a friendly voice, plus a connection to what, ending this repetition of crisis.
Rovner: I feel like the people who worked hard to get this implemented are pretty happy a year later at how, you know — obviously there’s further to go — but they’re happy with how far they’ve come. Well, so, probably the only thing worse than not getting care covered that should be is losing your health coverage altogether, which brings us to the Medicaid unwinding, as states redetermine who’s still eligible for Medicaid for the first time since the start of the pandemic. Our podcast colleague Tami Luhby over at CNN had a story Friday that I still haven’t seen anywhere else. Apparently 12 states have put their disenrollments on pause, says Tami. But we don’t know which 12, according to the KFF disenrollment tracker. As of Wednesday, July 26, at least 3.7 million people have been disenrolled from the 37 states that are reporting publicly, nearly three-quarters of those people for, quote, “procedural reasons,” meaning those people might still be eligible but for some reason didn’t complete the renewal process. The dozen states on pause are apparently ones that HHS [the Department of Health and Human Services] thinks are not following the renewal requirements and presumably ones whose disenrollments are out of line. The Centers for Medicare & Medicaid Services, which is overseeing this, is not naming those states, but this points up exactly what a lot of people predicted would happen when states started looking at eligibility again, that a lot of people who were quite likely still eligible were simply going to lose their insurance altogether, right?
Edney: Yeah, it seemed like there was a lot of preparation in some ways to anticipating this. And then, yeah, obviously you had the states that were just raring to go and try to get people off the rolls. And yeah, it would be very interesting to know what those 12 are. I think Tami’s reporting was stellar and she did a really good job. But that’s, like, one piece of the puzzle we’re missing. And I know CMS said that they’re not naming them because they are working well with them to try to fix it.
Rovner: The one thing we obviously do know is that there are several states that are doing this faster than is required — in fact, faster than is recommended. And what we know is that the faster they do it, the more likely they are going to have people sort of fall between the cracks. The people who are determined to be no longer eligible for Medicaid are supposed to be guided to programs for which they are eligible. And presumably most of them, unless they have, you know, gotten a really great job or hit the lottery, will still be eligible at least for subsidies under the Affordable Care Act. And they’re supposed to be guided to those programs. And it’s not clear yet whether that’s happening, although I know there are an awful lot of people who are watching this pretty closely. There were over 90 million people on Medicaid by the end of the pandemic, by the point at which states no longer had to keep people on. That’s a lot more people than Medicaid normally has. It’s usually more around 70 or even 80 million. So there’s excess people. And the question is what’s going to happen to those people and whether they’re going to have some sort of health insurance. And I guess it’s going to be more than a couple of months before we know that. Yes, Joanne.
Kenen: I think that it’s important to remember that there’s no open enrollment season for Medicaid the way there is for the ACA, so that if you’re disenrolled and you get sick and you go to a doctor or a hospital, they can requalify you and you can get it again. The problem is people who think that they’re disenrolled or are told that they’re disenrolled may not realize. They may not go to the doctor because they think they can’t afford it. They may not understand there’s a public education campaign there, too, that I haven’t seen. You know, if you get community health clinics, hospitals, they can do Medicare, Medicaid certification. But it’s dangerous, right? If you think, oh, I’m going to get a bill I can’t afford and I’m just going to see if I can tough this out, that’s not the way to take care of your health. So there’s that additional conundrum. And then, you know, I think that HHS can be flexible on special enrollment periods for those who are not Medicaid-eligible and are ACA-eligible, but most of them are still Medicaid-eligible.
Rovner: If you get kicked off of Medicaid, you get an automatic special enrollment for the ACA anyway.
Kenen: But not forever. If the issue is it’s in a language you don’t speak or at an address you don’t live in, or you just threw it out because you didn’t understand what it was — there is institutional failures in the health care system, and then there’s people have different addresses in three years, particularly poor people; they move around. There’s a communication gap. You know, I talked to a health care system a while ago in Indiana, a safety net, that was going through electronic health records and contacting people. And yet that’s Indiana and they, you know, I think it was Tami who pointed out a few weeks ago on the podcast, Indiana is not doing great, in spite of, you know, really more of a concerted effort than other states or at least other health systems, not that I talk to every single health system in the country. I was really impressed with how proactive they were being. And still people are falling, not just through the cracks. I mean, there’s just tons of cracks. It’s like, you know, this whole landscape of cracks.
Rovner: I think everybody knew this was going to be a big undertaking. And obviously the states that are trying to do it with some care are having problems because it’s a big undertaking. And the states that are doing it with a little bit less care are throwing a lot more people off of their health insurance. And we will continue to follow this. So it is the end of July. I’m still not sure how that happened.
Kenen: ’Cause after June, Julie.
Rovner: Yes. Thank you. July is often when committees in Congress rush to mark up bills that they hope to get to the floor and possibly to the president in that brief period when lawmakers return from the August recess before they go out for the year, usually around Thanksgiving. This year is obviously no exception. While Sen. Bernie Sanders [(I-Vt.)] at the Health, Education, Labor and Pensions Committee has delayed consideration of that primary care-community health center bill that we talked about last week until September, after Republicans rebelled against what was supposed to have been a bipartisan bill, committee action on pharmacy benefit managers and other Medicare issues did take place yesterday in the Senate Finance Committee and the House Ways and Means Committee. Sarah, you’re following this, right? What’s happening? And I mean, so we’ve now had basically all four of the committees that have some kind of jurisdiction over this who’ve acted. Is something going to happen on PBM regulation this year?
Karlin-Smith: Actually, five committees have acted because the House Ed[ucation] and Workforce Committee has also acted on the topic. So there’s a lot of committees with a stake in this. I think there’s certainly set up for something for the fall, end of the year, to happen in the pharmacy benefit manager space. And there’s a decent amount of bipartisanship around the issue, depending on exactly which committee you’re looking at. But even if the policies that haven’t gotten through haven’t been bipartisan, I think there’s general bipartisan interest among all the committees of tackling the issue. The question is how meaningful, I guess, the policies that we get done are. Right now it looks like what we’re going to end up with is some kind of transparency measure. It reminded me a little bit of our discussion of the mental health stuff [President Joe] Biden is doing going forward. Essentially what it’s going to end up doing is get the government a lot of detailed data about how PBMs operate, how this vertical integration of PBMs — so there’s a lot of common ownership between PBMs, health insurance plans, pharmacies and so forth — may be impacting the cost of our health care and perhaps in a negative way. And then from that point, the idea would be that later Congress could go back and actually do the sort of policy reforms that might be needed. So I know there are some people that are super excited about this transparency because it is such an opaque industry. But at the same point, you can’t kind of go to your constituents and say, “We’ve changed something,” right away or, you know, “We’re going to save you a ton of money with this kind of legislation.”
Rovner: You could tell how worried the PBMs are by how much advertising you see, if you still watch TV that has advertising, which I do, because I watch cable news. I mean, the PBMs are clearly anxious about what Congress might do. And given the fact that, as you point out and as we’ve been saying for years, drug prices are a very bipartisan issue — and it is kind of surprising, like mental health, it’s bipartisan, and they still haven’t been able to push this as far as I think both Democrats and Republicans would like for it to go. Is there anything in these bills that surprised you, that goes further than you expected or less far than expected?
Karlin-Smith: There’s been efforts to sort of delink PBM compensation from rebates. And in the past, when Congress has tried to look into doing this, it’s ended up being extremely costly to the government. And they figured out in this set of policies sort of how to do this without those costs, which is basically, they’re making sure that the PBMs don’t have this perverse incentive to make money off of higher-priced drugs. However, the health plans are still going to be able to do that. So it’s not clear how much of a benefit this will really be, because at this point, the health plans and the PBMs are essentially one and the same. They have the same ownership. But, you know, I do think there has been some kind of creativity and thoughtfulness on Congress’ part of, OK, how do we tackle this without also actually increasing how much the government spends? Because the government helps support a lot of the premiums in these health insurance programs.
Rovner: Yeah. So the government has quite a quite a financial stake in how this all turns out. All right. Well, we will definitely watch that space closely. Let us move on to abortion. In addition to it being markup season for bills like PBMs, it’s also appropriations season on Capitol Hill, with the Sept. 30 deadline looming for a completion of the 12 annual spending bills. Otherwise, large parts of the government shut down, which we have seen before in recent years. And even though Democrats and Republicans thought they had a spending detente with the approval earlier this spring of legislation to lift the nation’s debt ceiling, Republicans in the House have other ideas; they not only want to cut spending even further than the levels agreed to in the debt ceiling bill, but they want to add abortion and other social policy riders to a long list of spending bills, including not just the one for the Department of Health and Human Services but the one for the Food and Drug Administration, which is in the agriculture appropriations, for reasons I’ve never quite determined; the financial services bill, which includes funding for abortion in the federal health insurance plan for government workers; and the spending bill for Washington, D.C., which wants to use its own taxpayer money for abortion, and Congress has been making that illegal pretty much for decades. In addition to abortion bans, conservatives want riders to ban gender-affirming care and even bar the FDA from banning menthol cigarettes. So it’s not just abortion. It’s literally a long list of social issues. Now, this is nothing new. A half a dozen spending bills have carried a Hyde [Amendment] type of abortion ban language for decades, as neither Republicans nor Democrats have had the votes to either expand or take away the existing restrictions. On the other hand, these conservatives pushing all these new riders don’t seem to care if the government shuts down if these bills pass. And that’s something new, right?
Kenen: Over abortion it’s something new, but they haven’t cared. I mean, they’ve shut down the government before.
Rovner: That’s true. The last time was over Obamacare.
Kenen: Right. And, which, the great irony is the one thing they — when they shut down the government because Obamacare was mandatory, not just discretionary funding, Obamacare went ahead anyway. So, I mean, minor details, but I think this is probably going to be an annual battle from now on. It depends how hard they fight for how long. And with some of these very conservative, ultra-conservative lawmakers, we’ve seen them dig in on abortion, on other issues like the defense appointees. So I think it’s going to be a messy October.
Rovner: Yeah, I went back and pulled some of my old clips. In the early 1990s I used to literally keep a spreadsheet, and I think that’s before we had Excel, of which bill, which of the appropriations bills had abortion language and what the status was of the fights, because they were the same fights year after year after year. And as I said, they kind of reached a rapprochement at one point, or not even a rapprochement — neither side could move what was already there. At some point, they kind of stopped trying, although we have seen liberals the last few years try to make a run at the actual, the original Hyde Amendment that bans federal funding for most abortions — that’s in the HHS bill — and unsuccessfully. They have not had the votes to do that. Presumably, Republicans don’t have the votes now to get any of these — at least certainly not in the Senate — to get any of these new riders in. But as we point out, they could definitely keep the government closed for a while over it. I mean, in the Clinton administration, President [Bill] Clinton actually had to swallow a bunch of new riders because either it was that or keep the government closed. So that’s kind of how they’ve gotten in there, is that one side has sort of pushed the other to the brink. You know, everybody seems to assume at this point that we are cruising towards a shutdown on Oct. 1. Does anybody think that we’re not?
Kenen: I mean, I’m not on the Hill anymore, but I certainly expect a shutdown. I don’t know how long it lasts or how you resolve it. And I — even more certain we’ll have one next year, which, the same issues will be hot buttons five weeks before the elections. So whatever happens this year is likely to be even more intense next year, although, you know, next year’s far away and the news cycle’s about seven seconds. So, you know, I think this could be an annual fight and for some time to come, and some years will be more intense than others. And you can create a deal about something else. And, you know, the House moderates are — there are not many moderates — but they’re sort of more traditional conservatives. And there’s a split in the Republican Party in the House, and we don’t know who’s going to fold when, and we don’t — we haven’t had this kind of a showdown. So we don’t really know how long the House will hold out, because some of the more moderate lawmakers who are — they’re all up for reelection next year. I mean, some of them don’t agree. Some of are not as all or nothing on abortion as the —
Rovner: Well, there are what, a dozen and a half Republicans who are in districts that President Biden won who do not want to vote on any of these things and have made it fairly clear to their leadership that they do not want to vote on any of these things. But obviously the conservatives do.
Kenen: And they’ve been public about that. They’ve said it. I mean, we’re not guessing. Some of them spoke up and said, you know, leave it to the states. And that’s what the court decided. And they don’t want to nationalize this even further than it’s nationalized. And I think, you know, when you have the Freedom Caucus taking out Marjorie Taylor Greene, I mean, I have no idea what’s next.
Rovner: Yeah, things are odd. Well, I want to mention one more abortion story this week that I read in the newsletter “Abortion, Every Day,” by Jessica Valenti. And shoutout here: If you’re interested in this issue and you don’t subscribe, you’re missing out. I will include the link in the show notes. The story’s about Texas and the exam to become a board-certified obstetrician-gynecologist. The board that conducts the exam is based in Dallas and has been for decades, and Texas is traditionally where this test has been administered. During the pandemic, the exam was given virtually because nothing was really in person. But this year, if a doctor wants to become board-certified, he or she will have to travel to Texas this fall. And a lot of OB-GYNs don’t want to do that, for fairly obvious reasons, like they are afraid of getting arrested and sent to prison because of Texas’ extreme anti-abortion laws. And yikes, really, this does not seem to be an insignificant legal risk here for doctors who have been performing abortions in other states. This is quite the dilemma, isn’t it?
Karlin-Smith: Well, the other thing I thought was interesting about — read part of that piece — is just, she was pointing out that you might not just want to advertise in a state where a lot of people are anti-abortion that all of these people who perform abortions are all going to be at the same place at the same time. So it’s not just that they’re going to be in Texas. Like, if anybody wants to go after them, they know exactly where they are. So it can create, if nothing else, just like an opportunity for big demonstrations or interactions that might disrupt kind of the normal flow of the exam-taking.
Kenen: Or violence. Most people who are anti-abortion are obviously not violent, but we have seen political violence in this country before. And you just need one person, which, you know, we seem to have plenty of people who are willing to shoot at other people. I thought it was an excellent piece. I mean, I had not come across that before until you sent it around, and there’s a solution — you know, like, if you did it virtually before — and I wasn’t clear, or maybe I just didn’t pay attention: Was this certification or also recertification?
Rovner: No, this was just certification. Recertification’s separate. So these are these are young doctors who want to become board-certified for the first time.
Kenen: But the recertification issues will be similar. And this is a yearly — I mean, I don’t see why they just don’t give people the option of doing it virtual.
Rovner: But we’ll see if they back down. But you know, I had the same thought that Sarah did. It’s like, great, let’s advertise that everybody’s going to be in one place at one time, you know, taking this exam. Well, we’ll see how that one plays out. Well, finally this week, building on last week’s discussion on health and climate change and on drug shortages, a tornado in Rocky Mount, North Carolina, seriously damaged a giant Pfizer drug storage facility, potentially worsening several different drug shortages. Sarah, I remember when the hurricane in Puerto Rico seemed to light a fire under the FDA and the drug industry about the dangers of manufacturing being too centralized in one place. Now we have to worry about storage, too? Are we going to end up, like, burying everything underground in Fort Knox?
Karlin-Smith: I think there’s been a focus even since before [Hurricane] Maria, but that certainly brought up that there’s a lack of redundancy in U.S. medical supply chains and, really, global supply chains. It’s not so much that they need to be buried, you know, that we need bunkers. It’s just that — Pfizer had to revise the numbers, but I think the correct number was that that facility produces about 8% of the sterile kind of injectables used in the U.S. health system, 25% of all Pfizer’s — it’s more like each company or the different plants that produce these drugs, it needs to be done in more places so that if you have these severe weather events in one part of the country, there’s another facility that’s also producing these drugs or has storage. So I don’t know that these solutions need to be as extreme as you brought up. But I think the problem has been that when solutions to drug shortages have come up in Congress, they tend to focus on FDA authorities or things that kind of nibble around the edges of this issue, and no one’s ever really been able to address some of the underlying economic tensions here and the incentives that these companies have to invest in redundancy, invest in better manufacturing quality, and so forth. Because at the end of the day these are often some of the oldest and cheapest drugs we have, but they’re not necessarily actually the easiest to produce. While oftentimes we’re talking about very expensive, high-cost drugs here, this may be a case where we have to think about whether we’ve let the prices drop too low and that’s sort of keeping a market that works if everything’s going perfectly well but then leads to these shortages and other problems in health care.
Rovner: Yeah, the whole just-in-time supply chain. Well, before we leave this, Anna, since you’re our expert on this, particularly international manufacturing, I mean, has sort of what’s been happening domestically lit a fire under anybody who’s also worried about some of these, you know, overseas plants not living up to their safety requirements?
Edney: Well, I think there are these scary things happen like a tornado or hurricane and everybody is kind of suddenly paying attention. But I think that the decision-makers in the White House or on Capitol Hill have been paying attention a little bit longer. We’ve seen these cancer — I mean, for a long time not getting anything done, as Sarah mentioned — but recently, it’s sort of I think the initial spark there was these cancer drug shortages that, you know, people not being able to get their chemo. And that was from an overseas factory; that was from a factory in India that had a lot of issues, including shredding all of their quality testing documents and throwing them in a truck, trying to get it out of there before the FDA inspectors could even see it.
Kenen: That’s always very reassuring.
Edney: It is. Yeah. It makes you feel really good. And one bag did not make it out of the plant in time, so they just threw acid on it instead of letting FDA inspectors look at it. So it’s definitely building in this tornado. And what might come out of it if there are a lot of shortages, I haven’t seen huge concern yet from the FDA on that front. But I think that it’s something that just keeps happening. It’s not letting up. And, you know, my colleagues did a really good story yesterday. There’s a shortage of a certain type of penicillin you give to pregnant people who have syphilis. If you pass syphilis on to your baby, the baby can die or be born with a lot of issues — it’s not like if an adult gets syphilis — and they’re having to ration it, and adults aren’t getting treated fully for syphilis because the babies need it more so, and so this is like a steady march that just keeps going on. And there’s so many issues with the industry, sort of how it’s set up, what Sarah was talking about, that we haven’t seen anybody really be able to touch yet.
Rovner: We will continue to stay on top of it, even if nobody else does. Well, that is this week’s news. Now we will play my interview with KFF’s Céline Gounder, and then we will come back and do our extra credit. I am pleased to welcome back to the podcast Dr. Céline Gounder, KFF senior fellow and editor-at-large for public health, as well as an infectious disease specialist and epidemiologist in New York and elsewhere. Céline is here today to tell us about the second season of her podcast, “Epidemic,” which tells the story of the successful effort to eradicate smallpox and explores whether public health can accomplish such big things ever again. Céline, thank you for joining us.
Céline Gounder: It’s great to be here, Julie.
Rovner: So how did you learn about the last steps in the journey to end smallpox, and why did you think this was a story worth telling broadly now?
Gounder: Well, this is something I actually studied back when I was in college in the ’90s, and I did my senior thesis in college on polio eradication, and this was in the late ’90s, and we have yet to eradicate polio, which goes to show you how difficult it is to eradicate an infectious disease. And in the course of doing that research, I was an intern at the World Health Organization for a summer and then continued to do research on it during my senior year. I also learned a lot about smallpox eradication. I got to meet a lot of the old leaders of that effort, folks like D.A. Henderson and Ciro de Quadros. And fast-forward to the present day: I think coming out of covid we’re unfortunately not learning what at least I think are the lessons of that pandemic. And I think sometimes it’s easier to go back in time in history, and that helps to depoliticize things, when people’s emotions are not running as high about a particular topic. And my thought was to go back and look at smallpox: What are the lessons from that effort, a successful effort, and also to make sure to get that history while we still have some of those leaders with us today.
Rovner: Yes, you’re singing my song here. I noticed the first episode is called “The Goddess of Smallpox.” Is there really a goddess of smallpox?
Gounder: There is: Shitala Mata. And the point of this episode was really twofold. One was to communicate the importance of understanding local culture and beliefs, not to dismiss these as superstitions, but really as ways of adapting to what was, in this case, a very centuries-long reality of living with smallpox. And the way people thought about it was that in some ways it was a curse, but in some ways it was also a blessing. And understanding that dichotomy is also important, whether it’s with smallpox or other infectious diseases. It’s important to understand that when you’re trying to communicate about social and public health interventions.
Rovner: Yeah, because I think people don’t understand that public health is so unique to each place. I feel like in the last 50 years, even through HIV and other infectious diseases, the industrialized world still hasn’t learned very well how to deal with developing countries in terms of cultural sensitivity and the need for local trust. Why is this a lesson that governments keep having to relearn?
Gounder: Well, I would argue we don’t even do it well in our own country. And I think it’s because we think of health in terms of health care, not public health, in the United States. And that also implies a very biomedical approach to health issues. And I think the mindset here is very much, oh, well, once you have the biomedical tools — the vaccines, the diagnostics, the drugs — problem solved. And that’s not really solving the problem in a pandemic, where much of your challenge is really social and political and economic and cultural. And so if you don’t think about it in those terms, you’re really going to have a flat-footed response.
Rovner: So what should we have learned from the smallpox eradication effort that might have helped us deal with covid or might help us in the future deal with the next pandemic?
Gounder: Well, I think one side of this is really understanding what the local culture was, spending time with people in community to build trust. I think we came around to understanding it in part, in some ways, in some populations, in some geographies, but unfortunately, I think it was very much in the crisis and not necessarily a long-term concerted effort to do this. And that I think is concerning because we will face other epidemics and pandemics in the future. So, you know, how do you lose trust? How do you build trust? I think that’s a really key piece. Another big one is dreaming big. And Dr. Bill Foege — he was one of the leaders of smallpox eradication, went on to be the director of the CDC [Centers for Disease Control and Prevention] under President [Jimmy] Carter — one of the pieces of advice he’s given to me as a mentor over the years is you’ve got to be almost foolishly optimistic about getting things done, and don’t listen to the cynics and pessimists. Of course, you want to be pragmatic and understand what will or won’t work, but to take on such huge endeavors as eradicating smallpox, you do have to be very optimistic and remind yourself every day that this is something you can do if you put your mind to it.
Rovner: I noticed, at least in the first couple of episodes that I’ve listened to, the media doesn’t come out of this looking particularly good. You’re both a journalist and a medical expert. What advice do you have for journalists trying to cover big public health stories like this, like covid, like things that are really important in how you communicate this to the public?
Gounder: Well, I think one is try to be hyperlocal in at least some of your reporting. I think one mistake during the pandemic was having this very top-down perspective of “here is what the CDC says” or “here is what the FDA says” or whomever in D.C. is saying, and that doesn’t really resonate with people. They want to see their own experiences reflected in the reporting and they want to see people from their community, people they trust. And so I think that is something that we should do better at. And unfortunately, we’re also somewhat hampered in doing so because there’s been a real collapse of local journalism in most of the country. So it really does fall to places like KFF Health News, for example, to try to do some of that important reporting.
Rovner: We will all keep at it. Céline Gounder, thank you so much for joining us. You can find Season 2 of “Epidemic,” called “Eradicating Smallpox,” wherever you get your podcasts.
Gounder: Thanks, Julie.
Rovner: 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, why don’t you go first this week?
Karlin-Smith: Sure. I took a look at a piece from Brenda Goodman at CNN called “They Took Blockbuster Drugs for Weight Loss and Diabetes. Now Their Stomachs Are Paralyzed,” and it’s a really good deep dive into — people probably have heard of Ozempic, Wegovy — these what are called GLP-1 drugs that have been used for diabetes. And we’ve realized in higher doses even for people without diabetes, they often are very helpful at losing weight, that that’s partially because they slow the passage of food through your stomach. And there are questions about whether for some people that is leading to stomach paralysis or other extreme side effects. And I think it’s a really interesting deep dive into the complicated world of figuring out, Is this caused by the drug? Is it caused by other conditions that people have? And then how should you counsel people about whether they should receive the drugs and the benefits outweighing the risks? So I think it’s like just a good thing for people to read when you sort of hear all this hype about a product and how great they must be, that it’s always a little bit more complicated than that. And it also brought up another aspect of it, which is how these drugs may impact people who are going to get surgery and anesthesia and just the importance of communicating this to your doctor so they know how to appropriately handle the drugs. Because if you still have food content in your stomach during a surgery, that can be extremely dangerous. And I thought just that aspect alone of this story is really interesting, because they talk about people maybe not wanting to even let their doctors know they’re on these drugs because of stigma surrounding weight loss. And just again, once you get a new medicine that might end up being taken by a lot of people, the complications or, you know, there’s the dynamics of how it impacts other parts of medicine, and we need to adjust.
Rovner: Yeah. And I think the other thing is, you know, we know these drugs are safe because people with diabetes have been taking them for, what, six or seven years. But inevitably, anytime you get a drug that lots more people take, then you start to see the outlier side effects, which, if it’s a lot of people, can affect a lot of people. Joanne.
Kenen: I have a piece from FERN, which is the Food & Environment Reporting Network and in partnership with Yale Environ 360, and it’s by Gabriel Popkin. And it’s called “Can Biden’s Climate-Smart Agriculture Program Live Up to the Hype?” And I knew nothing about smart agriculture, which is why I found this so interesting. So, this is an intersection of climate change and food, which is obviously also a factor in climate change. And there’s a lot of money from the Biden administration for farmers to use new techniques that are more green-friendly because as we all know, you know, beef and dairy, things that we thought were just good for us — maybe not beef so much — but, like, they’re really not so good for the planet we live on. So can you do things like, instead of using fertilizer, plant cover crops in the offseason? I mean, there’s a whole list of things that — none of us are farmers, but there’s also questions about are they going to work? Is it greenwashing? Is it stuff that will work but not in the time frame that this program is funding? How much of it’s going to go to big agribusiness, and how much of it is going to go to small farmers? So it’s one hand, it’s another. You know, there’s a lot of low-tech practices. We’re going to have to do absolutely everything we can on climate. We’re going to have to use a variety of — you know, very large toolkit. So it was interesting to me reading about these things that you can do that make agriculture, you know, still grow our food without hurting the planet, but also a lot of questions about, you know, is this really a solution or not? But, you know, I didn’t know anything about it. So it was a very interesting read.
Rovner: And boy, you think the drug companies are influential on Capitol Hill. Try going with big agriculture. Anna.
Edney: I’m going to toot my own horn for a second here —
Rovner: Please.
Edney: — and do one of my mini-investigations that I did, “Mineral Sunscreens Have Potential Hidden Dangers, Too.” So there’s been a lot of talk: Use mineral sunscreen to save the environment or, you know, for your own health potentially. But they’re white, they’re very thick. And, you know, people don’t want to look quite that ghostly. So what’s been happening lately is they’ve been getting better. But what I found out is a lot of that is due to a chemical — that is what people are trying to move away from, is chemical sunscreens — but the sunscreen-makers are using this chemical called butyloctyl salicylate. And you can read the article for kind of the issues with it. I guess the main one I would point out is, you know, I talked to the Environmental Working Group because they do these verifications of sunscreens based on their look at how good are they for your health, and a couple of their mineral ones had this ingredient in it. So when I asked them about it, they said, Oh, whoops; like, we do actually need to revisit this because it is a chemical that is not recommended for children under 4 to be using on their bodies. So there’s other issues with it, too — just the question of whether you’re really being reef-safe if it’s in there, and other things as well.
Rovner: It is hard to be safe and be good to the planet. My story this week is by Amy Littlefield of The Nation magazine, and it’s called “The Anti-Abortion Movement Gets a Dose of Post-Roe Reality.” It’s about her visit to the annual conference of the National Right to Life Committee, which for decades was the nation’s leading anti-abortion organization, although it’s been eclipsed by some others more recently. The story includes a couple of eye-opening observations, including that the anti-abortion movement is surprised that all those bans didn’t actually reduce the number of abortions by very much. As we know, women who are looking for abortions normally will find a way to get them, either in state or out of state or underground or whatever. And we also learned in this story that some in the movement are willing to allow rape and incest exceptions in abortion bills, which they have traditionally opposed, because they want to use those as sweeteners for bills that would make it easier to enforce bans, stronger bans, things like the idea in Texas of allowing individual citizens to use civil lawsuits and forbidding local prosecutors from declining to prosecute abortion cases. We’re seeing that in some sort of blue cities in red states. It’s a really interesting read and I really recommend it. OK. That is our show for this week. As always, if you enjoyed the podcast, you can subscribe where ever 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 producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m @jrovner, and I’m on Bluesky and Threads. Joanne.
Kenen: @joannekenen1 at Threads.
Rovner: Sarah.
Karlin-Smith: I’m @SarahKarlin or @sarah.karlinsmith, depending on which of these many social media platforms you’re looking at, though.
Rovner: Anna.
Edney: @annaedney on Twitter and @anna_edneyreports on Threads.
Rovner: You can always find us here next week where we will always be in your podcast feed. Until then, be healthy.
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1 year 8 months ago
Capitol Desk, Health Care Costs, Health Care Reform, Health Industry, Insurance, Medicaid, Medicare, Mental Health, Multimedia, Pharmaceuticals, Public Health, Abortion, KFF Health News' 'What The Health?', Legislation, Podcasts, Prescription Drugs, texas, vaccines, Women's Health
Familias huyen de los estados que niegan atención de salud a las personas trans
Hal Dempsey quería “escaparse de Missouri”. Arlo Dennis está “huyendo de Florida”. La familia Tillison “no puede quedarse en Texas”.
Son parte de una nueva migración de estadounidenses que se están desarraigando debido a una oleada de leyes que restringen la prestación de servicios de salud para personas transgénero.
Missouri, Florida y Texas se encuentran entre al menos 20 estados que han limitado la atención de afirmación de género para jóvenes trans. Los tres estados también están entre aquellos que impiden que Medicaid, el seguro de salud público para personas de bajos ingresos, cubra aspectos clave de estos servicios para pacientes de todas las edades.
Más de una cuarta parte de los adultos trans encuestados por KFF y The Washington Post a fines del año pasado dijeron que se mudaron a otro vecindario, ciudad o estado en busca de un ambiente más tolerante. Ahora se sienten impulsados por las nuevas restricciones en la atención de la salud y la posibilidad de que estas se sigan multiplicando.
Muchos de ellos optan por estados que están aprobando leyes para proteger y apoyar estos servicios, lugares que se han convertido en santuarios. En California, por ejemplo, se aprobó una ley el otoño pasado que protege de demandas a las personas que reciben o brindan servicios de afirmación de género. Y ahora, los proveedores en California están recibiendo cada vez más llamadas de personas que quieren mudarse al estado para evitar interrupciones en sus servicios, dijo Scott Nass, médico local de familia y experto en atención de personas transgénero.
Pero esta afluencia de pacientes presenta un desafío, dijo Nass, “ya que el sistema actual no puede recibir a todos los refugiados que pudiera haber”.
En Florida, la persecución legislativa de las personas trans y su atención médica convenció a Arlo Dennis, de 35 años, de que es hora de irse. Hace más de una década que vive con los cinco miembros de su familia en Orlando. Ahora, tienen planes de mudarse a Maryland.
Dennis ya no tiene acceso a su terapia de reemplazo hormonal. Esto se debe a que desde fines de agosto, el seguro de Medicaid de Florida ya no cubre la atención médica relacionada con la transición. El estado considera que estos tratamientos son experimentales y que su eficacia no está suficientemente probada. Dennis dijo que su medicación se acabó en enero.
“Sin duda esto me ha causado problemas de salud mental y física”, explicó Dennis.
Agregó que mudarse a Maryland requiere recursos que su familia no tiene. Lanzaron una campaña de GoFundMe en abril y ya recaudaron más de $5,600, la mayoría donada por desconocidos, contó Dennis. Ahora la familia de tres adultos y dos niños piensa irse de Florida en julio. La decisión no fue fácil, pero sintieron que no había otra opción.
“No me importa si a mi vecino no le gusta mi forma de vivir”, dijo Dennis. “Pero esto era una prohibición literal de mi ser y me impedía el acceso a la atención médica”.
Mitch y Tiffany Tillison decidieron irse de Texas después de que los republicanos del estado enfocaron su agenda legislativa en las políticas anti-trans para los jóvenes. Su hija de 12 años se declaró trans hace unos dos años. Los padres pidieron que se publicara solo su segundo nombre, Rebecca: temen por su seguridad debido a las amenazas de violencia contra las personas trans.
Este año, la Legislatura de Texas aprobó una ley que limita la atención médica de afirmación de género para jóvenes menores de 18 años. La ley prohíbe específicamento aquellos servicios de salud física. Sin embargo, defensores de los derechos LGBTQ+ en el estado dicen que las medidas recientes también han tenido un escalofriante efecto sobre la prestación de servicios de salud mental para personas trans.
Los Tillison se negaron a precisar si su hija está recibiendo tratamiento y cuál. Pero afirmaron que reservan el derecho, como padres, de poder brindarle a su hija la atención que necesita, y que el estado de Texas les ha quitado ese derecho.
A esto se suman las amenazas cada vez más serias de violencia en su comunidad, sobre todo después del tiroteo masivo del 6 de mayo por parte de un supuesto neonazi. La masacre, que ocurrió en el centro comercial Allen Premium Outlets, en los suburbios de Dallas, a 20 millas de su casa, hizo que la familia decidiera mudarse al estado de Washington.
“La he mantenido a salvo”, dijo Tiffany Tillison, agregando que suele recordar el momento en que su hija le dijo que era trans durante un largo viaje a casa después de un torneo de fútbol. “Es mi responsabilidad seguir protegiéndola. Mi amor es interminable, incondicional”.
Por su parte, Rebecca tiene una actitud pragmática sobre la mudanza, que está planeada para julio. “Es triste pero tenemos que hacerlo”, dijo.
En Missouri, donde casi se aprueba una medida que limitaba la atención de la salud trans, algunas personas empezaron a repensar si deberían vivir ahí.
En abril, el fiscal general de Missouri, Andrew Bailey, presentó una norma de emergencia para limitar el acceso a la cirugía relacionada con la transición y el tratamiento hormonal cruzado para personas de todas las edades, además de restringir los bloqueadores de la pubertad, medicamentos que detienen la pubertad pero no alteran las características de género.
Al día siguiente, Dempsey, de 24 años, lanzó una campaña de GoFundMe para recaudar fondos para irse con sus parejas de Springfield, Missouri.
“Somos tres personas trans que dependen de la terapia de reemplazo hormonal y de la atención de afirmación de género que pronto será casi prohibida”, escribió Dempsey en su campaña de GoFundMe, agregando que querían “escapar de Missouri cuando se termine nuestro contrato de alquiler a fines de mayo.”
Dempsey dijo que su médico en Springfield les recetó un suministro de tres meses de terapia hormonal para cubrirlos hasta la mudanza.
Bailey retiró la norma en mayo, cuando la legislatura estatal restringió el acceso a estos tratamientos para menores pero no para adultos como Dempsey y sus parejas. Aún así, Dempsey dijo que no tenía muchas esperanzas para su futuro en Missouri.
El estado vecino de Illinois era una opción obvia para mudarse; la legislatura allí aprobó una ley en enero que exige que los seguros médicos regulados por el estado cubran la atención médica de afirmación de género sin ningún costo adicional. Dónde en Illinois exactamente era una pregunta más importante. Chicago y sus suburbios parecían demasiado caros. Sus parejas querían una comunidad progresista similar en tamaño y costo de vida a la ciudad que estaban dejando. Buscaban “un Springfield”, en Illinois.
“Pero no Springfield, Illinois”, bromeó Dempsey.
Gwendolyn Schwarz, de 23 años, también esperaba quedarse en Springfield, Missouri, su ciudad natal, donde recientemente se graduó de Missouri State University con un título en estudios de cine y medios de comunicación. Pensaba seguir su carrera académica en un programa de posgrado de la universidad y, en el siguiente año, someterse a una cirugía de transición, que puede requerir varios meses de recuperación.Pero sus planes cambiaron cuando la norma propuesta por Bailey generó miedo y confusión.“No quiero quedarme atrapada y temporalmente discapacitada en un estado que no reconoce mi humanidad”, dijo Schwarz.
Ella y un grupo de amigos tienen planeado mudarse al oeste, al estado de Nevada, cuyos legisladores aprobaron una medida que requiere que Medicaid cubra el tratamiento de afirmación de género para pacientes trans.
Schwarz espera que mudarse de Missouri a Carson City, la capital de Nevada, le permita seguir viviendo su vida sin miedo y eventualmente someterse a la cirugía que desea.
Dempsey y sus parejas finalmente decidieron mudarse a Moline, Illinois. Los tres tuvieron que renunciar a sus trabajos, pero han recaudado $3,000 en GoFundMe, más que suficiente para cubrir el depósito de un nuevo departamento.
El 31 de mayo, empacaron las pertenencias que no habían vendido e hicieron el viaje de 400 millas hasta su nuevo hogar.
Dempsey ya tuvo una cita con un proveedor médico en una clínica en Moline que atiende a la comunidad LGBTQ+, y consiguió que le recetaran los medicamentos que necesita para su terapia hormonal.
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 10 months ago
Health Industry, Mental Health, Noticias En Español, Rural Health, States, california, Florida, Illinois, Legislation, LGBTQ+ Health, Maryland, Missouri, Nevada, texas, Transgender Health
Medical Exiles: Families Flee States Amid Crackdown on Transgender Care
Hal Dempsey wanted to “escape Missouri.” Arlo Dennis is “fleeing Florida.” The Tillison family “can’t stay in Texas.”
They are part of a new migration of Americans who are uprooting their lives in response to a raft of legislation across the country restricting health care for transgender people.
Hal Dempsey wanted to “escape Missouri.” Arlo Dennis is “fleeing Florida.” The Tillison family “can’t stay in Texas.”
They are part of a new migration of Americans who are uprooting their lives in response to a raft of legislation across the country restricting health care for transgender people.
Missouri, Florida, and Texas are among at least 20 states that have limited components of gender-affirming health care for trans youth. Those three states are also among the states that prevent Medicaid — the public health insurance for people with low incomes — from paying for key aspects of such care for patients of all ages.
More than a quarter of trans adults surveyed by KFF and The Washington Post late last year said they had moved to a different neighborhood, city, or state to find more acceptance. Now, new restrictions on health care and the possibility of more in the future provide additional motivation.
Many are heading to places that are passing laws to support care for trans people, making those states appealing sanctuaries. California, for example, passed a law last fall to protect those receiving or providing gender-affirming care from prosecution. And now, California providers are getting more calls from people seeking to relocate there to prevent disruptions to their care, said Scott Nass, a family physician and expert on transgender care based in the state.
But the influx of patients presents a challenge, Nass said, “because the system that exists, it can’t handle all the refugees that potentially are out there.”
In Florida, the legislative targeting of trans people and their health care has persuaded Arlo Dennis, 35, that it is time to uproot their family of five from the Orlando area, where they’ve lived for more than a decade. They plan to move to Maryland.
Dennis, who uses they/them pronouns, no longer has access to hormone replacement therapy after Florida’s Medicaid program stopped covering transition-related care in late August under the claim that the treatments are experimental and lack evidence of being effective. Dennis said they ran out of their medication in January.
“It’s definitely led to my mental health having struggles and my physical health having struggles,” Dennis said.
Moving to Maryland will take resources Dennis said their family does not have. They launched a GoFundMe campaign in April and have raised more than $5,600, most of it from strangers, Dennis said. Now the family, which includes three adults and two children, plans to leave Florida in July. The decision wasn’t easy, Dennis said, but they felt like they had no choice.
“I’m OK if my neighbor doesn’t agree with how I’m living my life,” Dennis said. “But this was literally outlawing my existence and making my access to health care impossible.”
Mitch and Tiffany Tillison decided they needed to leave Texas after the state’s Republicans made anti-trans policies for youth central to their legislative agenda. Their 12-year-old came out as trans about two years ago. They asked for only her middle name, Rebecca, to be published because they fear for her safety due to threats of violence against trans people.
This year, the Texas Legislature passed a law limiting gender-affirming health care for youth under 18. It specifically bans physical care, but local LGBTQ+ advocates say recent crackdowns also have had a chilling effect on the availability of mental health therapy for trans people.
While the Tillisons declined to specify what treatment, if any, their daughter is getting, they said they reserve the right, as her parents, to provide the care their daughter needs — and that Texas has taken away that right. That, plus increasing threats of violence in their community, particularly in the wake of the May 6 mass shooting by a professed neo-Nazi at Allen Premium Outlets, about 20 miles from their home in the Dallas suburbs, caused the family to decide to move to Washington state.
“I’ve kept her safe,” said Tiffany Tillison, adding that she often thinks back to the moment her daughter came out to her during a long, late drive home from a daylong soccer tournament. “It’s my job to continue to keep her safe. My love is unending, unconditional.”
For her part, Rebecca is pragmatic about the move planned for July: “It’s sad, but it is what we have to do,” she said.
A close call on losing key medical care in Missouri also pushed some trans people to rethink living there. In April, Missouri Attorney General Andrew Bailey issued an emergency rule seeking to limit access to transition-related surgery and cross-sex hormones for all ages, and restrict puberty-blocking drugs, which pause puberty but don’t alter gender characteristics. The next day, Dempsey, 24, who uses they/them pronouns, launched a GoFundMe fundraiser for themself and their two partners to leave Springfield, Missouri.
“We are three trans individuals who all depend on the Hormone Replacement Therapy and gender affirming care that is soon to be prohibitively limited,” Dempsey wrote in the fundraising appeal, adding they wanted to “escape Missouri when our lease is up at the end of May.”
Dempsey said they also got a prescription for a three-month supply of hormone therapy from their doctor in Springfield to tide them over until the move.
Bailey withdrew his rule after the state legislature in May restricted new access to such treatments for minors, but not adults like Dempsey and their partners. Still, Dempsey said their futures in Missouri didn’t look promising.
Neighboring Illinois was an obvious place to move; the legislature there passed a law in January that requires state-regulated insurance plans to cover gender-affirming health care at no extra cost. Where exactly was a bigger question. Chicago and its suburbs seemed too expensive. The partners wanted a progressive community similar in size and cost of living to the city they were leaving. They were looking for a Springfield in Illinois.
“But not Springfield, Illinois,” Dempsey quipped.
Gwendolyn Schwarz, 23, had also hoped to stay in Springfield, Missouri, her hometown, where she had recently graduated from Missouri State University with a degree in film and media studies. She had planned to continue her education in a graduate program at the university and, within the next year, get transition-related surgery, which can take a few months of recovery.
But her plans changed as Bailey’s rule stirred fear and confusion.
“I don’t want to be stuck and temporarily disabled in a state that doesn’t see my humanity,” Schwarz said.
She and a group of friends are planning to move west to Nevada, where state lawmakers have approved a measure that requires Medicaid to cover gender-affirming treatment for trans patients.
Schwarz said she hopes moving from Missouri to Nevada’s capital, Carson City, will allow her to continue living her life without fear and eventually get the surgery she wants.
Dempsey and their partners settled on Moline, Illinois, as the place to move. All three had to quit their jobs to relocate, but they have raised $3,000 on GoFundMe, more than enough to put a deposit down on an apartment.
On May 31, the partners packed the belongings they hadn’t sold and made the 400-mile drive to their new home.
Since then, Dempsey has already been able to see a medical provider at a clinic in Moline that caters to the LGBTQ+ community — and has gotten a new prescription for hormone therapy.
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Health Industry, Mental Health, Rural Health, States, california, Florida, Illinois, Legislation, LGBTQ+ Health, Maryland, Missouri, Nevada, texas, Transgender Health
Slow Your Disenroll
The Host
Mary Agnes Carey
KFF Health News
Partnerships Editor and Senior Correspondent, oversees placement of KFF Health News content in publications nationwide and covers health reform and federal health policy. Before joining KFF Health News, Mary Agnes was associate editor of CQ HealthBeat, Capitol Hill Bureau Chief for Congressional Quarterly, and a reporter with Dow Jones Newswires. A frequent radio and television commentator, she has appeared on CNN, C-SPAN, the PBS NewsHour, and on NPR affiliates nationwide. Her stories have appeared in The Washington Post, USA Today, TheAtlantic.com, Time.com, Money.com, and The Daily Beast, among other publications. She worked for newspapers in Connecticut and Pennsylvania, and has a master’s degree in journalism from Columbia University.
The Biden administration this week pleaded with states to slow the post-pandemic removal of beneficiaries from their Medicaid rolls, as government data shows more than a million Americans have lost coverage since pandemic protections ended in April. Meanwhile, the Supreme Court ruled Medicaid beneficiaries may sue over their care.
In an appearance at the U.S. Capitol, the outgoing chief of the Centers for Disease Control and Prevention, Rochelle Walensky, offered no revelations as House Republicans pressed her about the agency’s response to the covid-19 pandemic. And senators are pushing for action on drug pricing, with Sen. Bernie Sanders (I-Vt.) vowing to hold up nominations to press the Biden administration for drug pricing reform.
This week’s panelists are Mary Agnes Carey of KFF Health News, Rachel Cohrs of Stat, Alice Miranda Ollstein of Politico, and Sandhya Raman of CQ Roll Call.
Panelists
Rachel Cohrs
Stat News
Alice Miranda Ollstein
Politico
Sandhya Raman
CQ Roll Call
Among the takeaways from this week’s episode:
- Asking states to slow the pace of Medicaid disenrollment, Health and Human Services Secretary Xavier Becerra offered options intended to reduce the number of Americans who lose coverage due to bureaucratic hurdles, such as by allowing community organizations to help people get coverage reinstated. But those options are only guidance for Medicaid programs across the country, and nothing says that states — especially conservative ones that have rushed to trim the number of low-income and disabled people relying on the program — will adopt the administration’s suggestions.
- A deal in the Braidwood Management v. Becerra court case will preserve, for now, the mandate requiring insurance coverage of preventive services for all but the litigants. The threat of a court order halting that coverage mandate nationwide has contributed to growing concerns about the overuse of injunctions allowing a single judge to bring down an entire program or law.
- The Supreme Court ruled that a woman is entitled to sue over the nursing home care her husband received that was covered by Medicaid, setting a precedent that allows beneficiaries to pursue legal action over their care.
- This week, House Republicans pressed CDC Director Walensky about the agency’s response to the pandemic, but, producing few new details, the hearing mostly proved an attempt by Republicans to relitigate concerns over issues like gain-of-function research funding. And Ashish Jha, the White House’s covid coordinator, is preparing to step down without a successor, offering more fodder for the argument that the Biden administration is de-emphasizing covid policy.
- Reports of threats against an Alabama clinic that does not provide abortions illuminate the realities of the post-Dobbs era: Even the state attorney general has taken issue with the clinic’s efforts to provide non-abortion maternal health care — and 40% of Alabama counties already have no access to maternal care.
- And on Capitol Hill, Sanders — head of a key Senate health committee — has said he will hold up reviewing nominations in an effort to pressure the Biden administration to produce a comprehensive drug pricing plan. Meanwhile, another key Senate committee releases its proposal to rein in fees charged by pharmacy benefit managers.
Also this week, KFF Health News’ Julie Rovner interviews Dan Mendelson, chief executive of Morgan Health — the successor project to Haven Healthcare, a joint venture by Amazon, Berkshire Hathaway, and JPMorgan Chase that aimed in 2018 to disrupt how Americans get health coverage but quickly disbanded. Rovner and Mendelson discuss the role of employers in insuring American workers.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Mary Agnes Carey: The Washington Post’s “I Lost 40 Pounds on Ozempic. But I’m Left With Even More Questions,” by Ruth Marcus.
Alice Miranda Ollstein: Stat’s “AMA Asks Doctors to De-Emphasize Use of BMI in Gauging Health and Obesity,” by Brittany Trang and Elaine Chen.
Rachel Cohrs: Politico’s “Thousands Lose Medicaid in Arkansas: Is This America’s Future?” by Megan Messerly.
Sandhya Raman: The Markup’s “Suicide Hotlines Promise Anonymity. Dozens of Their Websites Send Sensitive Data to Facebook,” by Colin Lecher and Jon Keegan.
Also mentioned in this week’s episode:
- KFF Health News’ “Biden Admin Implores States to Slow Medicaid Cuts After More Than 1M Enrollees Dropped,” by Hannah Recht.
- Politico Magazine’s “This Alabama Health Clinic Is Under Threat. It Doesn’t Provide Abortions,” by Alice Miranda Ollstein.
click to open the transcript
Transcript: Slow Your Disenroll
KFF Health News’ ‘What the Health?’
Episode Title: Slow Your Disenroll
Episode Number: 302
Published: June 15, 2023
[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]
Mary Agnes Carey: Hello and welcome back to “What the Health?”. I’m Mary Agnes Carey, partnerships editor at KFF Health News, filling in for Julie Rovner this week. I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, June 15, at 10:30 a.m. As always, news happens fast and things might have changed by the time you hear this. So here we go. We’re joined today by video conference by Alice Miranda Ollstein of Politico.
Alice Miranda Ollstein: Good morning.
Carey: Rachel Cohrs of Stat.
Rachel Cohrs: Hi, everybody.
Carey: And Sandhya Raman of CQ Roll Call.
Sandhya Raman: Good morning.
Carey: Later in the episode, we’ll have Julie’s interview with Dan Mendelson, CEO of Morgan Health. That’s the successor organization to the ambitious but ultimately unsuccessful effort by JPMorgan Chase, Amazon, and Berkshire Hathaway to remake employee health benefits. But first, let’s go to this week’s news. The Biden administration announced that more than a million Americans have lost their Medicaid coverage since early April as part of the ending of the covid public health emergency. Administration officials said that too many people were losing Medicaid due to red tape. About 4 in 5 people dropped so far either didn’t return paperwork to verify their eligibility or they omitted documents, according to federal and state data from 20 states. Department of Health and Human Services Secretary [Xavier] Becerra has sent a letter to state governors with some ideas on how to help stop this trend. What is he asking states to do?
Raman: So he gave states a few options. He said states could let Medicaid managed care organizations do a renewal on the beneficiaries’ behalf or let states kind of delay some of these cuts to allow for more outreach or let the community organizations in the state help individuals reinstate their coverage if they’ve fallen through some of the gaps here. But I think the thing to keep in mind is that all this is a guidance. All the Medicaid programs are different from each other. So while Becerra says that these are options, it doesn’t mean that any number of states will actually take on any of these opportunities to get more folks back into the program if they’re eligible.
Carey: To your point, some of the biggest drops in the enrollment in Medicaid have been in those more conservative states that are at political odds with the Biden administration. For example, in last week’s podcast, there was a lot of discussion about Arkansas and Indiana. For the panel, what are your thoughts on how state governments will respond to this guidance from HHS?
Ollstein: This is why there was so much anxiety last year when this was all being hashed out in the bill in Congress. Advocacy groups were sounding the alarm that there just weren’t enough guardrails to prevent this from happening. There were carrots; there were incentives for states to go slower and be more deliberate and careful in how they kick ineligible or, you know, can’t-determine-eligibility people off the rolls. But there weren’t a lot of sticks. There were carrots and not a lot of sticks. There weren’t a lot of penalties or repercussions for states that wanted to go as fast as possible and kick as many people off as possible, even if that meant folks falling through the cracks, which is what’s now happening.
Carey: So Sandhya sort of referenced this a moment ago. But I know, I mean, Medicaid is a shared federal-state program, but states, are they legally required to follow any of this guidance? I mean, what happens if a state just doesn’t do anything that’s in the letter? Does it matter?
Raman: I think the issue is that it doesn’t. I mean, there are some requirements that are applied to all programs if it’s in the Medicaid statute and sometimes when states do things that violate that and it ends up going to court. But I think anything here is they still have to follow what has been in the law that had said that after the public health emergency ended, that they could start slowly ripping people off the program. And that’s kind of the issue here.
Carey: Well, we’ll keep our eye on that one. And it sounds like another solution to find its way through the courts. Speaking of the courts, let’s move on to another major news development, and this one is regarding the preventive services coverage under the Affordable Care Act. It’s also known as the ACA. Texas conservatives that challenge the law’s preventive care mandate have reached a tentative compromise with the Justice Department that preserves free coverage for a range of medical services. Alice, I know you wrote about this agreement this week. Could you start us off and take us through the highlights?
Ollstein: Sure. So this was teased during oral arguments. The judges at the 5th Circuit [Court of Appeals] said explicitly, “Can’t you guys work something out?” And it turns out they could. So basically what the deal does is the Justice Department is agreeing not to enforce the preventive services mandate against the folks who are suing. So this is a group of conservative employers and some individual workers who say that the requirement to buy insurance that covers things like the HIV prevention drug PrEP violate their rights. And so the Biden administration is agreeing, OK, we won’t force you to buy the insurance that the law says you are required to buy. And in exchange, they agree not to push for the law to be frozen nationwide. So basically, everybody else’s insurance coverage gets to stay the same for now. There was a lot of anxiety about the nationwide injunction on the mandate that the lower judge ordered. So that is going to be on hold for now. The arguments on this case are going to drag on a lot longer, but this means that, for now, nationwide, the roles stay the same.
Carey: So how, if you know, how usual is this, in the middle of litigation, to come up with a deal that protects the people that are suing to stop a law, but it doesn’t affect the rest of the population, at least for now? I mean, is that unusual to kind of cut this kind of deal?
Ollstein: I think there has been a lot of debate recently about nationwide injunctions and the fact that some judges seem to like handing them out like candy. And just because of one person or a few people suing somewhere can bring down an entire law or program for the entire country. And there has been anxiety in the legal world about this getting kind of too common and out of hand. And so I think this is a sign that even very conservative judges like the ones on the 5th Circuit are looking for ways to rein it in and limit impacts.
Carey: Rachel, do you want to jump in? I see you nodding your head.
Cohrs: Yeah, it is just important to think about that trend, you know, as we see so many lawsuits play out. I know we’re seeing lawsuits over the Inflation Reduction Act as well. It’s a tactic that is being used. And I think if there is some more intention by DOJ to try to kind of limit the reach of these injunctions, then I think that is a really interesting trend, looking to other areas as well.
Carey: So that sounds like there’s no threat to the fall ACA enrollment season, that a ruling wouldn’t come before that enrollment season that could threaten preventive services for the entire ACA enrollment population and for those employer-sponsored plans as well.
Ollstein: So the 5th Circuit, after they blessed this deal officially, put out a briefing schedule that runs into November, so even after that, there could be more arguments, there could be an appeal up to the Supreme Court. So, yes, this is definitely running on into next year, if not longer.
Carey: OK. Well, the Supreme Court had a ruling this week that preserves Medicaid recipients’ right to sue , and policy watchers are saying that this is a major, major civil rights victory for Medicaid recipients. Before we were taping, we were chatting about it a little bit. Alice, fill us in here.
Ollstein: I mean, the specifics are that this is about a woman’s right to sue the state over the treatment of her husband in a nursing home. He was given chemical restraints, which is a horrible thing, if you look it up, that worsened his dementia. He was drugged, you know, in order to be easier to control, essentially, which is a very damaging practice. But that was sort of just the narrow issue at play. But this was seen as a major victory for any Medicaid beneficiary’s right to sue over not getting the care that they’re entitled to., and so this could have implications in the future for things like coverage of reproductive health services, including abortion, and other areas as well. So there was a lot of anxiety that this conservative Supreme Court majority would move to limit Medicaid beneficiaries’ rights to bring challenges. And that didn’t happen here.
Carey: It was a7-2 ruling, right?
Ollstein: Yeah. Yeah. It wasn’t as close as people thought.
Carey: There you go. So let’s move our discussion from the courts to Capitol Hill. Outgoing Centers for Disease Control and Prevention director Rochelle Walensky appeared before a House panel this week to talk about her agency’s response to the covid pandemic. Rachel, you covered the hearing. What were your key takeaways?
Cohrs: I mean, I think my key takeaway is that Republicans are re-litigating some of these comments that were made in early 2021 and that there wasn’t a whole lot of new revelation that came out. Walensky was pretty well prepared to stay on topic. She kind of deflected questions about gain-of-function research at NIH [the National Institutes of Health, a separate division within HHS] and lawsuits around kind of how CDC officials interacted with social media networks and regarding vaccine misinformation. So, I mean, lawmakers brought those things up, and she didn’t really engage on that at all. But she really didn’t give a lot of ground. I mean, there were criticisms of comments she had made about vaccines preventing the spread of covid-19. And I think her position was that her comments were backed by science at the time, and that as the virus has mutated, the truth about covid has changed. So I think she was not apologizing. It was not really engaging with them. And I think it was just kind of this anticlimactic kind of end. I mean, there had been so much buildup. Lawmakers had been requesting her testimony for, like, two months, and it was over and I don’t think she suffered any really significant hits there.
Carey: Were there any sort of agreement on lessons learned from how the CDC and, more broadly, the Biden administration handled its response to the pandemic? I mean, are there lessons learned here? Is there any road map to doing things differently or better next time?
Cohrs: Well, one thing she did bring up was, she said that the CDC didn’t really have visibility into how many people who were hospitalized with covid were also vaccinated. And I think that led to kind of an interesting back-and-forth. I think Republicans were obviously implying that vaccines didn’t work as well as they were initially pitched to. But I think she pivoted that to saying that “CDC would love more data on this. We don’t have the authority to collect it. And doctors are putting all this information into electronic health records and it’s not making its way to public health departments.” And so I think that kind of fits into the administration’s asks for the pandemic preparedness legislation that Congress is kind of working through right now. So I think she pivoted that to ask for more authority for her agency, which I don’t know that Republicans will be particularly enthusiastic about. But I think that was an interesting back-and-forth where she did concede that they just didn’t have a whole lot of information in the moment.
Carey: Would state health departments have to direct hospitals to collect that and then share it with the federal government, if she’s saying she doesn’t have the regulatory authority to do it?
Cohrs: I’m not an expert in this area, I’ll say. But my understanding is that the CDC was collecting information and had to, like, have individual agreements with health departments on how that was going to be collected. They couldn’t mandate that. So I think it would just make it a lot faster and I think give CDC a lot more authority to compel states to report some of this information in real time.
Carey: Sure. No, I know, that’s been one of the most interesting things in watching and reporting and reading all the coverage of how so many things changed with the covid pandemic as [we] received new information. I mean, it was a place we hadn’t been before, but we might be back there again, so. There’s another high-profile covid official who’s stepping down. Dr. Ashish Jha is leaving his post. I think today is actually his last day as the White House covid-19 response coordinator. This departure was announced a while ago, and it’s not a surprise, especially with the end of the public health emergency. But what do these departures mean for the administration’s future plans to handle covid? I mean, what message does it send to the public with these two folks leaving at this time?
Ollstein: I think if folks are already primed to think this administration is not making it a priority, this is more fodder for that viewpoint. You know, you could also note that these folks have been serving a long time in a very difficult role and this is, you know, sort of natural turnover. But I think that, with all of the protections lifting right now, and hearing very little about covid at all from the administration — I mean, the president hasn’t talked about it publicly in months; he didn’t say anything on the day the public health emergency ended, which folks were a little upset about. So you could see this as more evidence that it might not be a priority for them going forward. You know, on the other hand, they are setting up this, like, permanent pandemic office in the White House, although it doesn’t have a leader yet. So it’s a little TBD.
Raman: With Jha, you know, we don’t have someone replacing him in the way we do with a lot of other positions. So it’s going to be the first time in 14 months now that he’s not there, but it’s also, there’s not someone else there. And if you’re quietly removing that role, it just is another layer of saying, you know, this is less of a priority compared to some of the other things as it gets phased out.
Cohrs: I was just going to pop in and say that I think there’s a really interesting opening for Mandy Cohen here at CDC. There is this vacuum of leadership here. You know, the White House hasn’t appointed anyone to fill that spot. Secretary Becerra really hasn’t shown any appetite in leading on covid, and Dr. Fauci is gone, Walensky’s gone — just so many of these, like, old-guard kind of the covid response in the Biden administration have turned over. And my colleague Helen Branswell had a great story, I think that was sharp about how, you know, Mandy Cohen really is prepared, unlike a lot of other CDC directors in the past, to navigate these political dynamics. And I think it is a recognition that the CDC is political and public health is now political, and they can’t ignore that any longer. So I will be curious to see if they elevate her to communicate some more of that information in the absence of Dr. Jha.
Carey: Sure. And can you just remind our listeners who Mandy Cohen is and why she’s expected to get this job, or be nominated for this job?
Cohrs: Yes, she’s a longtime federal and state health official. I think she was in North Carolina, and most recently she was at a ACO [accountable care organization] company working with another former Obama administration official. And the White House, I think — there’s been a lot of reporting; I don’t know that they have officially tapped her yet.
Carey: I don’t think that’s happened yet. No, that has not.
Cohrs: Right. But it doesn’t have to go through a confirmation process. So if they do choose to move forward, I think the process would move pretty quickly to have her in place. So that is what our reporting has shown. Many other outlets have reported the same thing. So I think that’s just kind of the expectation for who’s next in line.
Carey: Well, let’s move on to another topic that appears frequently on this podcast, abortion. It continues to be a major news story around the country. And I’d like to start our discussion with a story that Alice did for Politico Magazine. Here’s the headline: “This Alabama Clinic Is Under Threat. It Doesn’t Provide Abortions.” So, Alice, tell us why a clinic that doesn’t provide abortion is being threatened.
Ollstein: Yeah. So when abortion became illegal in Alabama from conception, with no exemptions for rape and incest, abortion clinics either closed their doors, some picked up and moved to other states, but some, like the one I profiled, West Alabama Women’s Center, decided to stay and pivot to nonabortion services. And they have found it’s still a very hostile landscape and they very well might go out of business themselves in the coming months. They’re running into legal threats. The state attorney general has suggested that he views the kind of abortion-adjacent care they provide, you know, such as letting people know what their options are in terms of ordering pills or traveling to another state — that he might consider that aiding and abetting an abortion under the state’s criminal law. And so they are bracing for that at all times. At the same time, they have also really struggled financially. Most of their revenue in the past was from abortions, and they mainly serve a population now that struggles to pay for services and is often uninsured. The state has not expanded Medicaid, and so lots and lots of low-income people are uninsured. And so it’s just showing that what it means to be under threat in the post-Dobbs era is really different than what it meant to be under threat in the pre-Dobbs era and just how sparse the health care landscape is at all. There are just so few providers, hospitals in these areas, lots of places going out of business. And if clinics like this and other red-state clinics can’t survive, there’s going to be a lot of health care consequences.
Carey: I think in your story you said that 40% of the state was considered a maternal health desert.
Ollstein: Yeah. Right. Which means no access in those counties. And even more of the state is considered low-access, and so people are really struggling to find anywhere to go. A lot of rural hospitals have closed entirely. A lot are on the brink of closure. Some have closed their maternal care units. And so there’s just fewer and fewer options, especially fewer and fewer options for people to feel safe going to if they have an abortion either out of state or at home with pills and need follow-up care. Folks are afraid to go to a regular provider or hospital over fear of being reported to law enforcement, which is actually happening in a lot of places.
Carey: We just talked about the South. Let’s move to the Midwest. In Ohio, voters are going to head to the polls in August to weigh in on a proposal that, if passed, would require at least 60% of voters to pass any amendment to the state’s constitution. And that’s up from the current requirement of a simple majority. There would also be new, higher requirements on the number of signatures needed to get a constitutional amendment on the ballot. A Republican lawmaker in favor of the changes said they were aimed at blocking an abortion rights question that abortion rights supporters had hoped to get on the November ballot. So that’s Ohio. So in Indiana, there’s a separate issue. A class-action lawsuit asserts that the state’s abortion ban violates Hoosiers’ religious freedom. That lawsuit, which was filed by the ACLU [American Civil Liberties Union], says that Indiana’s abortion ban violates a religious freedom law that was once championed by former Indiana Gov. Mike Pence, who we know served as vice president to Donald Trump and is now challenging former President Trump and other Republicans for the 2024 GOP presidential nomination. Thoughts from the panel on these developments?
Raman: I think what’s happening in Ohio is pretty interesting because, you know, we’ve had other states before kind of try to change the threshold for passing something by ballot. And a lot of times it’s not said explicitly, but advocates have said that it’s targeting some measure, whether it’s Medicaid expansion or something else. And here we have a representative and the secretary of state kind of being pretty clear that it is about abortion in this case. And I think it being the secretary of state is especially interesting, because the secretary of state is who is certifying ballot measures and who you would look to for being the person in charge of that and making sure, you know, the t’s are crossed, the i’s dotted. So what happens there will be pretty interesting because that’s kind of an unusual play. And already we’re looking at an August ballot versus traditionally the November ballot. And a lot of times when things are pushed for a different date versus, like, traditional election day, it’s kind of, see if we can get a different turnout or kind of discourage people that might vote one way or the other. So it’ll be interesting to see how this kind of plays out in August or if there are changes before then.
Ollstein: And as for Indiana, I mean, this is one of a bunch of cases around the country where religious people are challenging abortion bans as infringing on their beliefs and right to practice. It’s sort of flipping the assumption on its head. You know, you have a lot of religious support of abortion bans. And this is showing that there are folks on the other side as well within the faith community. And it’s especially interesting in Indiana because they’re challenging one law signed by Mike Pence — the state’s pre-Dobbs abortion ban — by using another law signed by Mike Pence, which is the state’s RFRA law [Religious Freedom Restoration Act], the religious freedom law, and saying that, you know, the state law imposes one particular religion’s view of when life begins and when abortion is or is not acceptable. And that’s not shared by all people of faith. And in Judaism, a child is not a child until it takes its first breath, and that conflicts with abortion bans that are much earlier in pregnancy that sort of posit that it is a child and a life before that. So this will be really interesting to watch.
Carey: Sure. We’ll be watching all these cases very closely. But we’re going to turn now to another topic that’s important to millions of Americans, and that’s the cost of prescription drugs. Sen. Bernie Sanders — he’s a Vermont independent who chairs the Senate Health, Education, Labor and Pensions Committee, also known as the HELP Committee — he’s vowed not to move forward with any Biden administration health nominees, including the president’s pick to head the National Institutes of Health. That’s Dr. Monica Bertagnolli. Sen. Sanders is saying he’s going to keep this hold on until he sees a comprehensive plan from the White House on how to lower drug prices. What is he upset about specifically? And is he going to have other senators — have they joined him? Do you think that will be in the cards, or is this kind of a one-man band here?
Cohrs: My take on this is that he knows he can’t get the votes in Congress, so this is kind of his only option, is to try to pressure the administration to do it. And the only lever he has is nominees, so he’s using that. I don’t know how long he’ll hold out on this. I mean, it is — basically he’s arguing that the public has invested research dollars to help develop kind of the basic science that’s the foundation for a lot of important medications. And right now, the government isn’t really getting enough return on that investment. And there’s no requirement that companies that end up actually manufacturing these drugs and bringing them to market would price them in a fair, reasonable way. And so, I think his staff put out a report as well, with a release to the Post, making that argument, that the NIH could have leverage here if they chose to, and that in the past there have been clauses in contracts that could have given the government some leverage to go after these companies more aggressively but they’re just choosing not to. And so far, the Biden administration has shown no appetite to go after companies’ patents because of pricing issues. It’s never been done before. But I think, you know, Sen. Sanders realizes that he has an opening here, and he’s using the bully pulpit as much as he can. But I think ultimately I don’t see how this is resolved. And I think given that the Biden administration has overseen the passage of the most significant drug pricing reform in 20 years — which doesn’t fix all the problems, will say that. I think Sen. Sanders sent a letter about —
Carey: It’s in the Inflation Reduction Act, right?
Cohrs: Yes. Yes. The Inflation Reduction Act.
Carey: Which he voted for, OK.
Cohrs: Yes, he did vote for that. But I think there are outstanding issues about new medications especially that he’s trying to highlight here and saying, The problem isn’t fixed. We need to do more.
Carey: And so separately, a bipartisan group of Senate Finance Committee members have unveiled a proposal that they said would reform pharmacy benefit managers, or PBMs. That’s another entity we talk a lot about on the podcast. And the belief is that this measure would lower the cost of drugs. Rachel, I know that you have been covering this plan. Can you tell us about it?
Cohrs: I don’t know that this would lower the cost of drugs necessarily, and I think it’s more limited than the lawmakers who are sponsoring it have claimed it is. I think the problem that it’s trying to solve is that the payments between drugmakers and PBMs, and PBMs and the insurance companies or the employees that they’re working for, have traditionally been tied to a drug’s price. And so, just kind of like the — if anyone’s familiar with the medical loss ratio from the Affordable Care Act — it’s a similar idea, that if the price is higher, then there’s a bigger piece of the pie for everyone, percentagewise. So this bill aims to delink some of the fees in contracts with PBMs from the price of drugs. Now, this doesn’t change the rebates that drugmakers and PBMs negotiate on themselves, doesn’t touch that at all. It’s just fees. So I think it’s kind of hard to know how these work. You know, we don’t have them. They’re not public, but I think they’re trying to get at regulating this space a little bit more and trying to align those incentives a little bit better to make sure PBMs aren’t preferring more expensive medications for their own gain.
Carey: And what’s been the response from the PBM industry?
Cohrs: It is pretty fresh, but I think in general they have argued that the reason for high prices is drugmakers, because they set the prices. And I think this has been a food fight that’s been going on for a very long time. But I think lawmakers are kind of coming around to the idea of doing some sort of reform to the PBM industry. We’ll just have to wait and see what that ends up looking like.
Carey: All right. Well, we’ll keep our eyes on that one as well. And that’s this week’s news. Now we’re going to play Julie Rovner’s interview with Dan Mendelson of Morgan Health, and then we’ll be back with our extra credits.
Julie Rovner: I am pleased to welcome to the podcast Dan Mendelson, CEO of Morgan Health, a new business unit of the financial services giant JPMorgan Chase. Morgan Health’s goal is to improve health care for the company’s more than a quarter of a million employees and dependents, as well as everyone else with employer-provided insurance. If that sounds familiar, that’s because Morgan Health is the successor organization to Haven Healthcare. That was the high-profile 2018 project of JPMorgan, Amazon, and Berkshire Hathaway to remake the U.S. health care system from the ground up, led by one of the nation’s leading health care thinkers, surgeon, author, and policy wonk Atul Gawande. Today, Gawande is running global health programs at the U.S. Agency for International Development. Haven is no more. And if you listened to our special 300th episode earlier this month, our experts came down pretty hard on employers’ contributions to fixing what ails the health care system. So I’ve asked Dan here to talk about what is going on. Welcome, Dan.
Dan Mendelson: My pleasure.
Rovner: So, Dan may not have as high a public profile as Atul Gawande, but he has broad and long experience in health policy, from overseeing federal health programs at the Office of Management and Budget during the Bill Clinton administration to founding and growing Avalere Health, a successful health care consulting and advisory group. Dan, why did this job appeal to you and what made you think you could succeed where so many have tried before and failed, including very recently?
Mendelson: Look, this is a collaborative effort, and we’re working closely with a whole range of stakeholders from insurers to providers. I mean, the work that we’re doing in Columbus, for example, is with a really innovative primary care practice called Central Ohio Primary Care that has broad experience in delivering value through accountable care models in Medicare. So, I’d say that our belief that we will succeed really comes from the fact that we’re taking a very collaborative approach with other stakeholders in the health care system.
Rovner: Let’s start at the very beginning. Why are employers interested in the nation’s health care system and how it works? For most of them, it’s not their main line of business.
Mendelson: Well, I’d say that employers feel an obligation to provide insurance for their employees, and it’s an important benefit, and it’s one that employees expect. And it’s also an opportunity for employers to provide for the health and well-being of their employees.
Rovner: So employers really did used to drive a lot of health care innovation, probably coming only after Medicare in terms of shifting actual health care delivery. But they seem to have taken a back seat lately. What changed?
Mendelson: Well, look, you know, you had employers really active in the quality movement, and NCQA came out of employer interest, for example. So there really was kind of a head of steam. But it did wane. And I think that anyone who’s looking at the scene sees that Medicare and Medicaid have made a lot of progress with respect to driving accountable care and quality, whereas, at this point, there’s really … most of what’s happening through employers is fee for service. And it’s really problematic in terms of driving the quality agenda.
Rovner: And NCQA, that’s …?
Mendelson: National Commission for Quality Assurance.
Rovner: Thank you. The National Commission for Quality Assurance. Yeah, which used to be a big deal. And you’re right, I think most of what we’re seeing is now going on in the Medicare and Medicaid space. I feel like, you know, the millions of people who have employer-provided insurance right now have three main problems: the increasing unaffordability of care, with large and growing deductibles and copays; the increasing time and effort it takes to figure out what is and isn’t covered, and fighting for things that aren’t covered to be covered sometimes; and the fragmentation of the delivery system, making what was already hard to navigate very nearly impenetrable for some people, including people who are sick. I assume you’re trying to address all of those.
Mendelson: Yeah, we’re focused on quality and improving the quality of services, for sure. We’re focused on affordability. And then the one that you didn’t mention is health equity, which is one of the most difficult aspects of health care in America today, and certainly our focus as well. I mean, we see inequity in the health care system in the employer space, as well as in Medicare and Medicaid. So that’s also a target for us.
Rovner: What kind of steps are you taking to fix some of these problems? I mean, I know it’s what people get frustrated most with. It’s, like, they have insurance, but they feel like they can’t use it very well.
Mendelson: Yes. So, the way that we’re structured, there are three things that we’re doing to address these issues. And I’d say that we see our efforts as very collaborative. So we don’t believe that we alone can fix these problems, but rather what we’re doing is really driving innovation and trying to get employers, more broadly, focused on innovation in health care. So there are three ways that we’re doing this. First is that we’re investing, from the JPMorgan Chase balance sheet, in innovative health care companies that are proven to drive quality, improve quality, reduce costs, and better health equity. So that’s the first piece. And we can talk a little bit about some of the investments that we’ve made in the first two years of our operation.
Rovner: Give me one example of a company that’s doing that that you’re investing in.
Mendelson: Yes. An example is apree health. apree is a company that offers a[n] accountable care product to employers. And we’re using apree in Columbus, where we have 40,000 employees and dependents, and we’re now offering their services to our employees as an option to drive better health care.
Rovner: What do you see as the biggest challenge in health care going forward, particularly from the employer point of view?
Mendelson: Well, look, we’ve talked about a number of the issues. I’d say that, you know, we’re focused broadly on accountable care — and “accountable care” meaning making sure that there is a focus on quality and cost that is being held by an organization that can really take responsibility for care. So, to me, it’s really about alignment of incentives and making sure that those incentives are aligned not only in the employer sector but also across in the public programs.
Rovner: So you’re involved in private equity and, you know, the track record of private equity in health care, which was supposed to be an effort to get incentives aligned, hasn’t always worked out so well. I mean, in a lot of cases we’ve seen private equity just sucking money out of the health care system rather than putting it back in.
Mendelson: Look, as an investor, what we’re focused on is finding companies that are driving innovation and helping them succeed. And we’re putting our capital behind these companies, but we’re also really spending the time with them to make sure that they can be effective. And so, you know, we’ve done five investments over the course of two years, and they’re not only in accountable care, but also making sure that there’s good primary care in the system, driving better digital care, shifting expensive care from inpatient and outpatient settings into the home. So these are all facets of how employer-sponsored health care needs to be improved, and that’s the focus of our investing.
Rovner: So what does it look like when you get it all fixed?
Mendelson: When we get it all fixed …? I mean, look, I think we’re going to be at this for quite some time. But it’s really important for employers to articulate their needs and to make sure that those who are offering insurance for their employees are actually being attentive to not only cost but also quality and health equity. And I think that the facet that we’re really looking for is to make sure that health care improves and that these improvements are coming along not only in the public programs but also in the employer sector.
Rovner: Dan Mendelson, thank you so much for joining us.
Mendelson: My pleasure.
Carey: All right. We’re back, and it’s time for our extra credit segment. That’s when we each recommend a story that we read this week and we think you should read it, too. As always, don’t worry if you miss it. We’ll post the links on the podcast page at kffhealthnews.org and in the show notes on your phone or other mobile device. So, Alice, why don’t you go first this week?
Ollstein: Sure. I chose a piece in Stat by Brittany Trang and Elaine Chen. It’s called “AMA Asks Doctors to De-Emphasize Use of BMI in Gauging Health and Obesity.” I’ve heard in the medical community there has been a lot of discussion about moving away from using the BMI [body mass index] to evaluate people’s health. It was created to track population-level statistics and was never intended to be used to gauge individual health. It was not invented by someone with a medical background at all. And so people have been saying that, you know, it’s inaccurate and it leads to a lot of stigma. And so it’s interesting to see that sort of bubble up to this very mainstream, leading health care organization saying, “Look, you can’t just rely on the BMI. You also have to look at all these other factors.” Because extremely fit NFL players have really high BMIs, you know. You can’t — someone’s size does not necessarily determine their health. You can have people of all sizes be healthy or unhealthy. So this was encouraging to see.
Carey: Great. And for folks interested in more on that, we have a lot of coverage on that at kffhealthnews.org, so check that out. Rachel, why don’t you go next?
Cohrs: Sure. My piece this week is by one of Alice’s colleagues in Politico, Megan Messerly, and the headline is “Thousands Lose Medicaid in Arkansas: Is This America’s Future?” And she kind of got out beyond the Beltway and just spent some time in Arkansas really talking to everyday people who were having trouble staying on Medicaid. And I think it’s easy to get caught up in just talking about numbers and talking about policies and all of that. But I think she really brought to life the issues and the barriers that some people are facing in Arkansas, which really is the center of these disenrollments that we’re seeing right now. So I think it was really timely, really well done, very much put the human face on both the people who are getting disenrolled, but also kind of some of the on-the-ground efforts to stop that from happening and just kind of the challenges that they are working on with these compressed timelines. I thought it was really well done.
Carey: Yeah, it’s a great story. Sandhya.
Raman: My extra credit this week is called “Suicide Hotlines Promise Anonymity. Dozens of Their Websites Send Sensitive Data to Facebook.” It’s by Colin Lecher and Jon Keegan for The Markup in partnership with Stat. And I thought this was just a really interesting piece that investigated whether crisis center websites that were using Meta Pixel, which is like a piece of code that tracks user behavior for advertising that a lot of sites use — and just, like, the worry here is sharing sensitive information to Facebook, especially when it is personally identifiable. And with the crisis center, it’s much, much more sensitive data than, you know, maybe, like, shopping habits. And so they looked at data from 186 local call center websites. And I will let you read to see how many of them were using this.
Carey: Mine is from Ruth Marcus at The Washington Post. And it’s called “I Lost 40 Pounds on Ozempic. But I’m Left With Even More Questions.” In this article, she talks about her lifelong struggle to lose weight, to keep it off, but how those pounds always find their way back. And Marcus explores the history and the science behind the weight loss drugs. And she also takes on societal debate over obesity itself: Do we think of it as a personal failing, or is it a disease, a chronic condition whose underpinnings are in genetics and brain chemistry? It is a great read. All right. That’s our show for the week. And as always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left a review; that helps other people find us too. Special thanks, as always, to the amazing Francis Ying, our producer. You can email us with your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m @maryagnescarey.
Carey: Alice.
Ollstein: @AliceOllstein.
Carey: Rachel.
Cohrs: @rachelcohrs.
Carey: And Sandhya.
Raman: @SandhyaWrites.
Carey: We’ll be back in your feed next week. Until then, be healthy.
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The Crisis Is Officially Ending, but Covid Confusion Lives On
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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.
The formal end May 11 of the national public health emergency for covid-19 will usher in lots of changes in the way Americans get vaccines, treatment, and testing for the coronavirus. It will also change the way some people get their health insurance, with millions likely to lose coverage altogether.
Meanwhile, two FDA advisory committees voted unanimously this week to allow the over-the-counter sale of a specific birth control pill. Advocates of making the pill easier to get say it could remove significant barriers to the use of effective contraception and prevent thousands of unplanned pregnancies every year. The FDA, however, must still formally approve the change, and some of its staff scientists have expressed concerns about whether teenagers and low-literacy adults will be able to follow the directions without the direct involvement of a medical professional.
This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, Tami Luhby of CNN, and Margot Sanger-Katz of The New York Times.
Panelists
Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Tami Luhby
CNN
Margot Sanger-Katz
The New York Times
Among the takeaways from this week’s episode:
- The formal public health emergency may be over, but covid definitely is not. More than 1,000 people in the United States died of the virus between April 19 and April 26, according to the Centers for Disease Control and Prevention. While most Americans have put covid in their rearview mirrors, it remains a risk around the country.
- The Senate Finance Committee held a hearing on “ghost networks,” lists of health professionals distributed by insurance companies who are not taking new patients or are not actually in the insurance company’s network. Ghost networks are a particular problem in mental health care, where few providers take health insurance at all.
- Another trend in the business of health care is primary care practices being bought by hospitals, insurance companies, and even Amazon. This strategy was popular in the 1990s, as health systems sought to “vertically integrate.” But now the larger entities may have other reasons for having their own networks of doctors, including using their patients to create revenue streams.
- Court battles continue over the fate of the abortion pill mifepristone, as a federal appeals court in New Orleans prepares to hear arguments about a lower-court judge’s ruling that would effectively cancel the drug’s approval by the FDA. In West Virginia, the maker of the generic version of the drug is challenging the right of the state to ban medication approved by federal officials. At the same time, a group of independent abortion clinics from various states is suing the FDA to drop restrictions on how mifepristone can be prescribed, joining mostly Democratic-led states seeking to ensure access to the drug.
Plus for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: Slate’s “Not Every Man Will Be as Dumb as Marcus Silva,” by Moira Donegan and Mark Joseph Stern.
Joanne Kenen: The Baltimore Banner’s “Baltimore Isn’t Accessible for People With Disabilities. Fixing It Would Cost Over $650 Million,” by Hallie Miller and Adam Willis.
Tami Luhby: CNN’s “Because of Florida Abortion Laws, She Carried Her Baby to Term Knowing He Would Die,” by Elizabeth Cohen, Carma Hassan, and Amanda Musa.
Margot Sanger-Katz: The New Yorker’s “The Problem With Planned Parenthood,” by Eyal Press.
Also mentioned in this week’s episode:
- CNN’s “Here’s How the End of the Covid-19 Public Health Emergency Affects You,” by Tami Luhby and Alex Leeds Matthews.
- The New York Times’ “Corporate Giants Buy Up Primary Care Practices at Rapid Pace,” by Reed Abelson.
- Vox’s “Independents Back Abortion Rights. They’re Less Sure Democrats Do,” by Rachel M. Cohen.
Click to open the transcript
Transcript: The Crisis Is Officially Ending, but Covid Confusion Lives On
[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 at KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We are taping this week on Thursday, May 11, at 10:30 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 Tami Luhby, of CNN.
Tami Luhby: Hello.
Rovner: Margot Sanger Katz, The New York Times.
Sanger-Katz: Good morning.
Rovner: And Joanne Kenen, of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hi, everybody.
Rovner: So the news on the debt ceiling standoff, just so you know, is that there is no news. Congressional leaders and White House officials are meeting again on Friday, and we still expect to not see this settled until the last possible minute. But there was plenty of other health news. We will start with the official end of the U.S. public health emergency for covid. We have talked at some length about the Medicaid unwinding that’s now happening and a potential to end some telehealth service reimbursement. But there’s a lot more that’s going away after May 11. Tami, you’ve been working to compile everything that’s about to change. What are the high points here?
Luhby: Well, there are a lot of changes depending on what type of insurance you have and whether we’re talking about testing, treatment, or vaccines. So I can give you a quick rundown. We wrote a visual story on this today. If you go to CNN.com, you’ll find it on the homepage right now.
Rovner: I will link to it in the show notes for the podcast.
Luhby: Basically, many people will be paying more for treatments and for tests. However, vaccines will generally remain free for almost everyone. And basically, if you look at our story, you’ll see the color-coded guide as to how it may impact you. But basically, testing — at-home tests are no longer guaranteed to be free. So if you’ve been going to your CVS or somewhere else to pick up your eight tests a month, your insurer may opt to continue providing it for free, but I don’t think many will. And then for lab tests, again, it really depends. But if you have Medicaid, all tests will be free through 2024. However, if you have private insurance or Medicare, you will probably have to start paying out-of-pocket for tests that are ordered by your provider. Those deductibles, those pesky deductibles, and copays or coinsurance will start kicking in again. And for treatments, it’s a little bit different again. The cost will vary by treatment if you have Medicare or private insurance. However, Paxlovid and treatments that are purchased by the federal government, such as Paxlovid, will be free as long as supplies last. Now, also, if you’re uninsured, there is a whole different situation. It’ll be somewhat more difficult for them. But there are still options. And, you know, the White House has been working to provide free treatments and vaccines for them.
Rovner: So if you get covid, get it soon.
Luhby: Like today. Right, exactly. Yeah, but with vaccines, even though, again, they’re free as long as the federal supplies last — but because of the Affordable Care Act, the CARES Act, and the Inflation Reduction Act, people with private insurance, Medicare, and Medicaid will actually continue to be able to get free vaccines after the federal supplies run out.
Rovner: After May 11.
Luhby: It’s very confusing.
Rovner: It is very confusing. That’s why you did a whole graphic. Joanne, you wanted to add something.
Kenen: And the confusion is the problem. We have lots of problems, but, like, last week, we talked a little bit about this. You know, are we still in an emergency? We’re not in an emergency the way we were in 2020, 2021, but it’s not gone. We all know it’s much, much better, but it’s not gone. And it could get worse again, particularly if people are confused, if people don’t know how to test, if people don’t know that they can still get things. The four of us are professionals, and, like, Tami’s having to read this complicated color-coded chart — you know, you get this until September 2024, but this goes away in 2023. And, you know, if you have purple insurance, you get this. And if you have purple polka-dotted insurance, you get that. And the lack of clarity is dangerous, because if people don’t get what they’re eligible for because they hear “emergency over, everything — nothing’s free anymore” — we’re already having trouble with uptake. We don’t have enough people getting boosters. People don’t know that they can get Paxlovid and that it’s free and that it works. We are still in this very inadequate response. We’re not in the terrifying emergency of three years ago, but it’s not copacetic. You know, it’s not perfect. And this confusion is really part of what really worries me the most. And the people who are most likely to be hurt are the people who are always most likely to be hurt: the people who are poor, the people who are in underserved communities, the people who are less educated, and it’s disproportionately people in minority communities. We’ve seen this show before, and that’s part of what I worry about — that there’s a data issue that we’ll get to whenever Julie decides to get to it, right?
Rovner: Yeah, I mean, and that’s the thing. With so much of the emergency going away, we’re not really going to know as much as we have before.
Sanger-Katz: In some ways, how you feel about this transition really reflects how you feel about the way that our health care system works in general. You know, what happened for covid is —and I’m oversimplifying a little bit — is we sort of set up a single-payer system just for one disease. So everyone had access to all of the vaccines, everyone had access to all of the tests, everyone had access to all of the treatments basically for free. And we also created this huge expansion of Medicaid coverage by no longer allowing the states to kick people out if they no longer seem to be eligible. So we had the kind of system that I think a lot of people on the left would like to see, not just for one disease but for every disease, where you have kind of more universal coverage and where the cost of obtaining important treatments and prevention is zero to very low. And this is definitely going to be a bumpy transition, but it’s basically a transition to the way our health care system works for every other disease. So if you are someone who had some other kind of infectious disease or a chronic disease like cancer, rheumatoid arthritis, whatever, you’ve been sort of dealing with all of this stuff the whole time — that you have to pay for your drugs; that, you know, that testing is expensive; that it’s confusing where you get things; that, you know, there’s a lot of complexity and hoops you have to jump through; that a lot depends on what kind of insurance you have; that what kind of insurance you can get depends on your income and other demographic characteristics. And so I find this transition to be pretty interesting because it seems like it would be weird for the United States to just forever have one system for this disease and another system for every other disease. And of course, we do have this for people who are experiencing kidney disease: They get Medicare, they get the government system, regardless of whether they would otherwise be eligible for Medicare.
Rovner: We should point out that Congress did that in 1972. They haven’t really done it since.
Kenen: And when it was much more rare than it was today.
Rovner: And when people didn’t live very long with it mostly.
Kenen: We didn’t have as much diabetes either.
Sanger-Katz: But anyway, I just think this transition kind of just gives us a moment to reflect on, How does the system work in general? How do we feel about how the system works in general? Are these things good or bad? And I agree with everything that Joanne said, that the confusion around this is going to have public health impacts as relates to covid. But we have lots of other diseases where we just basically have the standard system, and now we’re going to have the standard system for covid, too.
Kenen: You could have gone to the hospital with the bad pneumonia and needed oxygen, needed a ventilator, and when they tested you, if you had covid, it was all free. And if you had, you know, regular old-fashioned pneumonia, you got a bill. I agree with everything Margot said, but it’s even that silly. You could have had the same symptoms in your same lungs and you had two different health care systems and financing systems. None of us have ever thought anything made sense.
Rovner: Yes, well, I actually —
Kenen: That’s why we have a podcast. Otherwise, you know —
Sanger-Katz: And also the way that the drugs and vaccines were developed was also totally different, right? With the government deeply involved in the technology and development, you know, funding the research, purchasing large quantities of these drugs in bulk in advance. I mean, this is just not the way that our system really works for other diseases. It’s been a very interesting sort of experiment, and I do wonder whether it will be replicated in the future.
Luhby: Right. But it was also clear that this is not the beginning of the pushback. I mean, Congress has not wanted to allocate more money, you know, and there’s been a lot of arguments and conflicts over the whole course of this so-called single-payer system, or this more flexible system. So the U.S.’ approach to health care has been pushing its way in for many months.
Rovner: I naively, at the beginning of the pandemic, when we first did this and when the Republicans all voted for it, it’s like, let’s have the federal government pay the hospitals for whatever care they’re providing and make everything free at point of service to the patient — and I thought, Wow, are we going to get used to this and maybe move on? And I think the answer is exactly the opposite. It’s like, let’s get rid of it as fast as we possibly can.
Kenen: There’s money that the government has put in. I believe it is $5 billion into the next generation of vaccines and treatments, because the vaccine we have has certainly saved many lives. But as we all know, it’s not perfect. You know, it’s preventing death, but not infection. It’s not ending circulation of the disease. So we need something better. This debt ceiling fight, if the people in the government could spend all $5 billion today — like we were joking, if you want to get covid, if you’re going to get covid, get it today — I mean, if they could, they would spend all $5 billion of it today, too, because that could be clawed back. I mean, that’s — it’s going to be part of the coming fight.
Luhby: But the question is, even if they develop it, will anyone take it, or will enough people take it? That’s another issue.
Rovner: Well, since we’re sort of on the subject, I’m going to skip ahead to what I was going to bring up towards the end, which I’m calling “This Week in Our Dysfunctional Health System.”
Kenen: We could call it that way every week.
Rovner: Yes, that’s true. But this is particularly about how our health system doesn’t work. First up is “ghost networks.” Those are where insurers provide lists of health care providers who are not, in fact, available to those patients. A quote “secret shopper survey” by the staff of the Senate Finance Committee found that more than 80% of mental health providers found in insurance directories in 12 plans from six states were unreachable, not accepting new patients, or not actually in network. This is not a new problem. We’ve been hearing about it for years and years. Why does it persist? One would think that you could clean up your provider directory. That would be possible, right?
Kenen: Didn’t they legislate that, though? Didn’t they say a few years ago you have to clean it up? I mean, there are going to be some mistakes because there’s, you know, many, many providers and people will make changes or leave practices or … [unintelligible] … jobs or whatever. But I thought that they had supposedly, theoretically, taken care of this a couple years ago in one of the annual regulations for ACA or something.
Rovner: They supposedly, theoretically, took care of the hospitals reporting their prices in a way that consumers can understand, too. So we’ve discovered in our dysfunctional health care system that Congress passing legislation or HHS [the Department of Health and Human Services] putting out rules doesn’t necessarily make things so.
Kenen: Really?
Rovner: Yeah. I just — this was one that I had thought, Oh, boy, I have a whole file on that from like the 1990s.
Sanger-Katz: It’s a huge problem, though. I mean —
Rovner: Oh, it is.
Sanger-Katz: You know, we have a system where, for large groups of Americans, you are expected to shop for a health insurance plan. If you’re purchasing a marketplace plan for yourself, if you are purchasing a Medicare Advantage plan when you become eligible for Medicare, and in many cases, if you have a choice of employer plans, you know, you’re supposed to pick the plan that’s best for you. And we have a system that tells people that having those kinds of choices is good and maximizes the benefits to people, to be able to pick the best plan. But for a lot of people, being able to have the doctors and hospitals that they use or to have a choice of a wide range of doctors for various problems, including mental health services, is a huge selling point of one plan versus another. And again, you have these ghost networks, when you have this lack of transparency and accuracy of this information, it just causes people to be unable to make those good choices and it undermines the whole system of market competition that underpins all of this policy design. I think you can argue that there are not a million gazillion people who are actually shopping on the basis of this. But I do think that knowing whether your medical providers are covered when you’re choosing a new health care plan is actually something that a lot of people do look into when they are choosing a health insurance plan. And discovering that a doctor that you’ve been seeing for a long time and whose relationship you really value and whose care has been important to you is suddenly dishonestly represented as a part of an insurance plan that you’ve selected is just, you know, it’s a huge disappointment. It causes huge disruptions in people’s care. And I think the other thing that this study highlighted is that health insurance coverage for mental health services continues to be a very large problem. There has been quite a lot of legislation and regulation trying to expand coverage for mental health care. But there are these kind of lingering problems where a lot of mental health care providers simply don’t accept insurance or don’t accept very many patients who have insurance. And so I think that this report did a good job of highlighting that place where I think these problems are even worse than they are with the health care system at large. It’s just very hard to find mental health care providers who will take your insurance.
Rovner: And I would say, when you’re in mental health distress or you have a relative who’s in mental health distress, the last thing you need is to have to call 200 different providers to find one who can help you.
Kenen: A lot of the ones that are taking insurance are these online companies, and the good thing is that they’re taking insurance and that there may be convenience factors for people, although there’s also privacy and other factors on the downside. But there have been reports about, your data is not private, and I have no idea how you find out which company is a good actor in that department and which company is just selling identifiable data. I mean, I think it was The Washington Post that had a story about that a couple of weeks ago. You know, you click in on something — straight to the data broker. So, yeah, you get insurance coverage, but at a different price.
Rovner: Well, overlaid over all of this is consolidation, this time at the primary care level of health care. Margot, your colleague Reed Abelson had a big story this week on primary care practices being bought up by various larger players in the health care industry, including hospitals, insurance companies, pharmacy chains, and even Amazon. These larger entities say this can act as a move towards more coordinated, value-based care, which is what we say we all want. But there’s also the very real possibility that these giant, vertical, mega medical organizations can just start to name their own price. I mean, this is something that the FTC [Federal Trade Commission] in theory could go after but has been kind of loath to and that Congress could go after but has also been kind of loath to.
Sanger-Katz: Yeah, in some ways we’ve seen this movie before. There was a big wave of primary care acquisitions that happened, I think, in the 1990s by hospitals. And the hospitals learned pretty quickly that primary care doctors are kind of a money-losing proposition, and they divested a lot. But I think what Reed documented so nicely is that the entities that are buying primary care now are more diverse and they have different business strategies. So it’s not just hospitals who are sort of trying to get more patients referred to their higher-profit specialists, but it’s also Medicare Advantage insurers who benefit from being able to tell the primary care doctors to diagnose their patients with lots of diseases that generate profits for the plan, and it’s other kinds of groups that see primary care as kind of the front door to other services that can be revenue-generating. And it’s very — it will be very interesting to see what the effects of these will be and whether these will turn out to be good business decisions for these new entities and of course also whether it will turn out to be good for patient care.
Rovner: Yeah, I remember in the 1990s when hospitals were buying up doctor practices, the doctors ended up hating it because they were asked to work much harder, see patients for a shorter period of time, and some of them actually — because they were now on salary rather than being paid for each patient — were cutting back on, you know, in general, on the amount of care they were providing. And that was what I think ended up with a lot of these hospitals divesting. It didn’t work out the way the hospitals hoped it would. But as you point out, Margot, this is completely different, so we will — we will see how this moves on. All right. Let’s go back a little bit. We’re going to talk about abortion in a minute. But first, something that could prevent a lot of unintended pregnancies: On Wednesday, an advisory committee for the Food and Drug Administration — actually two advisory committees — unanimously recommended that the agency approve an over-the-counter birth control pill. This has been a long time coming here in the U.S., even though pills like these are available without prescription in much of Europe and have been for years. But while the FDA usually follows the recommendations of its advisory committees, we know that some FDA scientists have expressed concerns about over-the-counter availability. So what’s the problem with giving women easier access to something that so many depend on?
Kenen: There are trade-offs. And there are — some of the scientists at the FDA are more conservative than others about, What if the woman doesn’t understand how to take the pill properly? Things like that. I mean, obviously, if we go the over-the-counter route, as other countries are doing, there have to be very simple, easy-to-understand explanations in multiple languages. Pharmacists should be able to explain it like, you know, “You have to take it every day, and you have to take it at approximately the same time every day,” and things like that. So, you know, obviously not taking it right doesn’t protect you as much as taking it right. But there are a lot of people who will be able to get it. You know, getting a prescription is not always the easiest thing in the world. Or if you’re lucky, you just click on something and somebody calls your doctor and gets you a refill. But that doesn’t always work and not everybody has access to that, and you have to still see your doctor sometimes for renewals. So if you’re a working person who doesn’t have sick leave and you have to take time off from work every three months to get a refill or you have to hire child care or you have to take three buses — you know, it takes a whole day, and then you sit in a waiting room at a clinic. I mean, our health system is not patient-friendly.
Rovner: I was going to say, to go back to what Tami was talking about earlier — if pills are available over the counter, it’s going to depend on, you know, what your insurance is like, whether you would get it covered.
Kenen: The cost.
Rovner: That’s right. And it could end up being —
Kenen: But I don’t think the FDA is concerned about that.
Rovner: No, they’re not. That’s not their job.
Kenen: The pill is pretty safe, and these are lower-dose ones than the pills that were invented, you know, 50 years ago. These are lower-dose, safer drugs with fewer side effects. But I mean, there’s concern about the rare side effect, there’s concern about people not knowing how to take it, all that kind of stuff. But Julie just mentioned the cost of coverage is a separate issue because under the ACA it’s covered. And if it becomes over the counter, the mechanism for getting that covered is, at this point, unclear.
Sanger-Katz: But we do have a system now where, for a lot of women, obtaining birth control pills depends on being able to get a doctor’s appointment on a regular basis. I think, you know, this is not standard practice, but I do think that there are a lot of OB-GYNs who basically won’t write you for a birth control pill unless you come in on a regular basis to receive other kinds of health screenings. And I think many of them do that with good intentions because they want to make sure that people are getting Pap smears and other kinds of preventive health services. But on the other hand, it does mean that there are a lot of women who, if they don’t have time or they can’t afford to come in for regular doctor’s appointments, lose access to birth control. And I think over-the-counter pills is one way of counteracting that particular problem.
Rovner: And I think that’s exactly why so many of the medical groups are urging this. During the more than a decade-long fight over making the morning-after pill over the counter, the big hang-up was what to do about minors. Even President Obama, a major backer of women’s reproductive health rights, seemed unhappy at the idea of his then-barely teenage daughters being able to get birth control so easily and without notifying either parent. It seems unimaginable that we’re not going to have that same fight here. I mean, literally, we spent six years trying to figure out what age teens could be to safely buy morning-after pills, which are high doses of basically these birth control pills. I’m actually surprised that we haven’t really seen the minor fight yet.
Kenen: I think everyone’s waiting for somebody else to do it first. I mean, like Julie, I wasn’t expecting to hear more about age limitations, and that’ll probably come up when the FDA acts, because I think the advisory committee just wanted to — they were pretty strong saying, “Yeah, make this OTC.”
Sanger-Katz: I also think the politics around emergency contraception are a little bit different because I think that, while physicians understand that those pills are basically just high-dose birth control pills and that they work in just the same way as typical contraception, I think there’s a perception among many members of the public that because you can take them after unprotected sex, that they might be something closer to an abortion. Now, that is not true, but because I think that is a common misperception, it does lead to more discomfort around the availability of those pills, whereas birth control pills — while I think there are some people who object to their wide dissemination and certainly some who are concerned about them in the hands of children, I think they are more broadly accepted in our society.
Rovner: We obviously are going to see, and we’ll probably see fairly soon. We’re expecting, I guess, a decision from the FDA this summer, although with the morning-after pill we expected a decision from FDA that lingered on for many months, in some cases many years.
Kenen: And I think it’s at least hypothetically possible that states will not do what the FDA says. Say the FDA says they can be over the counter with no age limitations. I can see that becoming a fight in conservative states. I mean, I don’t know exactly the mechanism for how that would fall, but I could certainly think that somebody is going to dream up a mechanism so that a 12-year-old can’t get this over the counter.
Rovner: I want to move to abortion because first up is the continuing question over the fate of the abortion pill, which we get to say at this point: not the same as the emergency contraceptive pill, which, as Margot said, is just high-dosage regular birth control pills. Needless to say, that’s the one that we’re having the current court action over. And there was even more action this week, although not from that original case, which will be heard by the Court of Appeals later in this month. In West Virginia, a judge declined to throw out a case brought by GenBioPro. They are the maker of the generic version of mifepristone, the abortion pill. That generic, which accounts for more than half the market, would be rendered unapproved even under the compromise position of the Court of Appeals because it was approved after the 2016 cutoff period. Remember, the Court of Appeals said, We don’t want to cancel the approval, but we want to roll it back to the date when FDA started to loosen the restrictions on it. So, in theory, there would be no generic allowed, but that’s actually not even what the West Virginia lawsuit is about; it’s about challenging the state’s total abortion ban as violating the federal supremacy of the FDA over state laws. Joanne, that’s what sort of you were talking about now with contraceptives, too. And this is the big unanswered question: Can states basically overrule the FDA’s approval and the FDA’s approval for even an age limit?
Kenen: Well, I mean, I’m not saying they can, but I am saying that I don’t know where the question will come down. Go back to the regular birth control; I can certainly see conservative states trying to put age limits on it. And I don’t know how that’ll play out legally. But this is a different issue, and this is why the abortion pill lawsuits are not just about the abortion pill. They’re about drug safety and drug regulation in this country. The FDA is the agency we charge with deciding whether drugs are safe and good for human beings, and not the system of politicians and state legislators in 50 different states replacing their judgment. So obviously, it’s more complicated, because it’s abortion, but one of several bottom lines in this case is who gets to decide: the FDA or state legislature.
Rovner: And right: Do states get to overrule what the federal Food and Drug Administration says? Well, I —
Kenen: Remember, some states have had — you know, California’s had stricter regulations on several health things, you know, and that’s been allowed that you could have higher ceilings for various health — you know, carcinogenics and so forth. But they haven’t fundamentally challenged the authority of the FDA.
Rovner: Yet. Well, since confusion is our theme of the week, also this week a group of independent abortion clinics led by Whole Woman’s Health, which operates in several states, filed suit against the FDA, basically trying to add Virginia, Kansas, and Montana to the other 18 states that sued to force FDA to further reduce the agency’s current restrictions on mifepristone. A federal judge in Washington state ruled — the same day that Texas judge did that mifepristone should have its approval removed — judge in Washington said the drug should become even more easily available. In the real world, though, this is just sowing so much confusion that nobody knows what’s allowed and what isn’t, which I think is kind of the point for opponents, right? They just want to make everybody as confused as possible, if they can’t actually ban it.
Sanger-Katz: I think they actually want to ban it. I mean, I think that’s their primary goal. I’m sure there are some that will settle for confusion as a secondary outcome. I think just this whole mess of cases really highlights what a weird moment we are, where we’re having individual judges and individual jurisdictions making determinations about whether or not the FDA can or can’t approve the safety and efficacy of drugs. You know, as Joanne said, we’ve just had a system in this country since the foundation of the FDA where they are the scientific experts and they make determinations and those determinations affect drug availability and legal status around the country. And this is a very unusual situation where we’re seeing federal courts in different jurisdictions making their own judgments about what the FDA should do. And I think the Texas judge that struck down the approval of mifepristone, at least temporarily, has come in for a lot of criticism. But what the judge in Washington state did is sort of a flavor of the same thing. It’s telling the FDA, you know, how they should do their business. And it’s a weird thing.
Rovner: It is. Well, one last thing this week, since we’re talking about confusion, and the public is definitely confused, according to two different polls that are out this week — on the one hand, a Washington Post-ABC News poll found that a full two-thirds of respondents say mifepristone, the abortion pill, should stay on the market, and more than half say they disagree with the Supreme Court’s overturn of Roe v. Wade, including 70% of independents and more than a third of Republicans. Yet, in focus groups in April, more than a third of independents couldn’t differentiate Democrats’ position on abortion from Republicans’. As reported by Vox, one participant said, quote, “I really haven’t basically heard anything about which party is leaning toward it and which one isn’t.” When pressed, she said, “If I had to guess, I would say Democrat would probably be against it and Republican would probably be for it.” Another participant said she thought that Joe Biden helped get the Supreme Court judges who overturned Roe. We really do live in a bubble, don’t we? I think that was sort of the most mind-blowing thing I’ve read since — all the months since Roe got overturned, that there are people who care about this issue who have no idea where anybody stands.
Sanger-Katz: I think it’s just a truth about our political system that there are a lot of Americans who are what the political scientists call low-information voters. These are people who are just not following the news very closely and not following politics very closely. And they may have a certain set of opinions about issues of the day, but I think it is a big challenge to get those people aware of where candidates stand on issues of concern to them and to get them activated. And it doesn’t really surprise me that independent voters are the ones who seem to be confused about where the parties are, because they’re probably the least plugged into politics generally. And so, for Democrats, it does seem like this lack of information is potentially an opportunity for them, because it seems like when you ask voters what they want on abortion, they want things that are more aligned with Democratic politicians’ preferences than Republicans’. And so it strikes me that perhaps some of those people in the focus group who didn’t know who stood for what, maybe those are gettable voters for the Democratic Party. But I think — you know, we’re about to go into a very heated campaign season, you know, as we go into the presidential primaries and then the general election in which there are going to be a lot of ads, a lot of news coverage. And, you know, I think abortion is very likely to be a prominent issue during the campaigns. And I think it is almost certainly going to be a major goal of the Biden presidential reelection campaign to try to make sure that these people know where Biden stands relative to abortion, because it is an issue that so many voters agree with him on.
Rovner: And it makes you see, I mean, there’s a lot of Republicans who are trying to sort of finesse this issue now and say, you know, “Oh, well, we’re going to restrict it, but we’re not going to ban it,” or, “We have all these exceptions” that are, of course, in practice, you can’t use. Obviously, these are the kinds of voters who might be attracted to that. So we will obviously see this as it goes on.
Kenen: But Julie, do you remember whether they were actually voters? Because I had the same reaction to you: like, of all the things to not be sure of, that one was pretty surprising. But we also know that in places like Kansas where, you know, where there are not that many Democrats, these referenda won. Voters have supported abortion rights in the 2022 elections and in these state referenda. So independents must be voting with the —
Rovner: I was going to say, I think if you’re doing —
Kenen: Something isn’t totally — something is not totally adding up there.
Rovner: If you’re doing a focus group for politics, one presumes that you get voters. So, I mean, I think that was — that was the point of the focus group. But yeah, it’s —
Kenen: Or people who say they’re voters.
Rovner: Or people who say they’re voters. That is a different issue. All right. Well, something not that confusing: Now 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. Tami, why don’t you go first this week?
Luhby: OK. Well, I picked a story from CNN by my colleagues on the health team. It’s titled “Because of Florida Abortion Laws, She Carried Her Baby to Term Knowing He Would Die,” by Elizabeth Cohen, Carma Hassan, and Amanda Musa. And I have to say that when I first read this story, I couldn’t get through it, because it was so upsetting. And then when I selected it as an extra credit, I had to read it in full. But it’s about a family in Florida whose son was born without kidneys. They knew that he was going to die. And it’s about all of the effects from everything from, you know, the mother, Deborah Dorbert, on her physically and emotionally. But it also, you know, talked about the family and, you know, the effect on the marriage and the effect — which was just so upsetting — was on the 4-year-old son, who became very attached. I don’t think they even knew — well, it wasn’t a girl. It was actually a boy. But for some reason, this older son felt that it was a girl and just kept saying, like, “My sister is going to do X, Y, Z.” And, you know, how did the parents break it to him? Because he saw that his mother was, you know, pregnant and getting larger. And, you know, it was just figuring out how to break it to him that no baby was coming home. So the details are heart-wrenching. The quotes in the third paragraph: “‘He gasped for air a couple of times when I held him,’ said Dorbert. ‘I watched my child take his first breath, and I held him as he took his last one.’” So, you know, these are things that, you know — and we just talked about how the states are arguing over what exceptions there should be, if any, you know, and these are the stories that the legislators don’t think about when they pass these laws.
Rovner: I think I said this before because we’ve had a story like this almost every week. This one was particularly wrenching. But I think the one thing that all these stories are doing is helping people understand, particularly men, that there are complications in pregnancy, that they’re not that rare, that, you know, that they sort of throw off and say, “Oh, well, that’s, you know, one in a million,” — It’s not one in a million. It’s like one in a thousand. That’s a lot of people. So I mean, that’s why there are a lot of these stories, because there are a lot of pregnancies that don’t go as expected.
Luhby: Right. And it really shows the chilling effect on doctors because, you know, you would say, “Oh, it’s simple: life of the mother or, you know, life of the fetus” or something like that. That seems pretty straightforward, but it isn’t. And these doctors, in cases where, you know, other cases where it is the life of the mother, which seem, again, very straightforward, the doctors are not willing to do anything because they’re afraid.
Rovner: I know. Joanne.
Kenen: This is a story from The Baltimore Banner that has a very long title. It’s by Hallie Miller and Adam Willis, and it’s called “Baltimore Isn’t Accessible for People With Disabilities. Fixing It Would Cost Over $650 Million.” Baltimore is not that big a city. $650 million is a lot of curbs and barriers. And there’s also a lot of gun violence in Baltimore. If you drive around Baltimore, and I work there a few days a week, you see lots of people on walkers and scooters and wheelchairs because many of them are survivors of gun violence. And you see them struggling. And there were quotes from people saying they, you know, were afraid walking near the harbor that they would fall in because there wasn’t a path for them. It is not invisible, but we treat it like it’s invisible. And it’s been many years since the Americans with Disabilities Act was passed, and we still don’t have it right. It’s a — this one isn’t confusion like everything else we talked about today. I loved Margot’s phrase about confusion as a secondary outcome. I think you should write a novel with that title. But it’s — this isn’t confusion. This is just not doing the right thing for people who are — we’re just not protecting or valuing.
Rovner: And I’d say for whom there are laws that this should be happening. Margot.
Sanger-Katz: I had another story about abortion. This one was in The New Yorker, called “The Problem With Planned Parenthood,” by Eyal Press. The story sort of looked at Planned Parenthood, you know, which is kind of the largest abortion provider in the country. It’s — I mean, it’s really a network of providers. They have all these affiliates. They’re often seen as being more monolithic than perhaps they are. But this story argued that people who were operating independent abortion clinics, who do represent a lot of the abortion providers in the country as well, have felt that Planned Parenthood has been too cautious legally, too afraid of running afoul of state laws, and so that has led them to be very conservative and also too conservative from the perspective of business, and that there is a view that Planned Parenthood is not serving the role that it could be by expanding into areas where abortion is less available. I thought it was just interesting to hear these criticisms and hoped to understand that the community of abortion providers are, you know, they’re diverse and they have different perspectives on how abortion access should work and what kinds of services should be provided in different settings. And they also view each other as business competition in some cases. I mean, a lot of the complaints in this article had to do with Planned Parenthood opening clinics near to independent clinics and kind of taking away the business from them, making it harder for them to survive and operate. Anyway, I thought it was a very interesting window into these debates, and it did mesh with some of my reporting experience, particularly around the legal cautiousness. I did a story before the Dobbs decision came down from the Supreme Court where Planned Parenthood in several states had just stopped offering abortions even before the court had ruled, because they anticipated that the court would rule and they just didn’t want to make any mistake about running afoul of these laws such that, you know, women were denied care that was still legal in the days leading up to the Supreme Court decision.
Rovner: Yeah, it’s a really good story. Well, my story is kind of tangentially about abortion. It’s from Slate, and it’s called “Not Every Man Will Be as Dumb as Marcus Silva,” by Moira Donegan and Mark Joseph Stern. And it’s about a case from Texas, of course, that we talked about a couple of weeks ago, where an ex-husband is suing two friends of his ex-wife for wrongful death, for helping her get an abortion. Well, now the two friends have filed a countersuit claiming that the ex-husband knew his wife was going to have an abortion beforehand because he found the pill in her purse and he put it back so that he could use the threat of a lawsuit to force her to stay with him. It feels like a soap opera, except it is happening in real life. And my first thought when I read this is that it’s going to make some great episode of “Dateline” or “20/20.” That is our show, as always.
Kenen: Or, not “The Bachelor.”
Rovner: Yeah, but not “The Bachelor.” That is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us too. Special thanks, as always, to our ever-patient producer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m still there. I’m at @jrovner. Joanne?
Kenen: @JoanneKenen.
Rovner: Tami.
Luhby: @Luhby.
Rovner: Margot.
Sanger-Katz: @sangerkatz.
Rovner: We will be back in your feed next week, hopefully with a little less confusion. Until then, be healthy.
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PBMs, the Brokers Who Control Drug Prices, Finally Get Washington’s Attention
For two decades, patients and physicians eagerly awaited a lower-cost version of the world’s bestselling drug, Humira, while its maker, AbbVie, fought off potential competitors by building a wall of more than 250 patents around it.
When the first Humira biosimilar — essentially a generic version — finally hit the market in January, it came with an unpleasant surprise. The biosimilar’s maker, Amgen, launched two versions of the drug, which treats a host of conditions including rheumatoid arthritis. They were identical in every way but this: One was priced at about $1,600 for a two-week supply, 55% off Humira’s list price. But the other was priced at around $3,300, only about 5% off. And OptumRx, one of three powerhouse brokers that determine which drugs Americans get, recommended option No. 2: the more expensive version.
As Murdo Gordon, an Amgen executive vice president, explained in an earnings call, the higher price enabled his company to give bigger rebates, or post-sale discounts, to Optum and other intermediaries. Most of that money would be passed on to insurers, and patients, he said. Gordon did not mention that the higher-priced option would leave some patients paying much more out-of-pocket, undermining the whole rationale for generic drugs.
The Optum-Amgen announcements perfectly elucidated why, after years of thundering against drugmakers, Congress and the administration have now focused on regulating the deal-makers known as pharmacy benefit managers, or PBMs. Sen. Bernie Sanders’ health committee grilled a panel of PBM and pharmaceutical executives Wednesday in preparation for a vote on PBM legislation, expected Thursday.
The three biggest PBMs — OptumRx, CVS Caremark, and Express Scripts — control about 80% of prescription drug sales in America and are the most profitable parts of the health conglomerates in which they’re nestled. CVS Health, the fourth-largest U.S. corporation by revenue on Fortune’s list, owns CVS Caremark and the insurer Aetna; UnitedHealth Group, a close fifth, owns Optum; and Cigna, ranking 12th, owns Express Scripts. While serving as middlemen among drugmakers, insurers, and pharmacies, the three corporations also own the highest-grossing specialty drug and mail-order pharmacies.
“John D. Rockefeller would be happy to be alive today,” said David Balto, a former Federal Trade Commission attorney who represents clients suing PBMs. “He could own a PBM and monopolize economic power in ways he never imagined.”
Drug manufacturers claim that exorbitant PBM demands for rebates force them to set high list prices to earn a profit. Independent pharmacists say PBMs are driving them out of business. Physicians blame them for unpredictable, clinically invalid prescribing decisions. And patients complain that PBMs’ choices drain their pocketbooks.
With PBMs driving prices, competition has had the opposite effect from what economic theory predicted Medicare patients would spend out-of-pocket on drugs, one large study showed. Over a five-year period, patients were paying 50% more for branded drugs that had competitors than for those that didn’t.
All this makes the PBMs ripe targets for politicians of both parties. Yet the complexity and obscurity of their role in the drug marketplace have skeptics wondering whether legislation advancing in the House and Senate will actually help patients or lower prices at the pharmacy counter.
“We may try to make things better and actually make things worse,” Sen. Rand Paul (R-Ky.) said at Wednesday’s hearing.
The PBMs pass along most of their rebates to health plans, which will bear a larger share of patient drug costs in coming years under Medicare changes that are part of the 2022 Inflation Reduction Act. It’s likely that pressure on insurers will be passed along to PBMs and result in even more aggressive limits on physician prescription decisions, said Troyen Brennan, an adjunct Harvard University professor who was chief medical officer for CVS Health from 2008 to 2022.
Several congressional bills target drug company rebates to PBMs and what’s known as “spread pricing” — the extra money PBMs collect from insurers over what they pay pharmacies for drugs.
But those aren’t the big PBM revenue sources anymore, Brennan said. PBMs today mostly make money by owning mail-order and specialty pharmacies and from the government’s 340B program, created to help hospitals that treat a disproportionately elderly and poor population. Medicare requires drugmakers to provide big discounts to participating hospitals and the growing rosters of affiliated physician groups they own, and some of those discounts end up with PBMs.
Employers and the federal government decide where most of the rebate money goes, PBM leaders testified Wednesday — and health plans decide what out-of-pocket costs their covered members will pay.
In other words, drug companies blame PBMs for high drug counter prices, PBMs blame insurers, and insurers blame the drug companies, all part of a health care system that hinges on an unspoken bargain: Make life comfortable for some — mostly the upper and middle classes — at the expense of lower-income and poorly insured people who get what they get.
PBMs’ extraction of money from patients in the name of “copayments” at the pharmacy counter “reintroduces medical underwriting” that was stripped away by the Affordable Care Act, Craig Garthwaite, a health care researcher at Northwestern’s Kellogg School of Management, told a Senate panel last year. Insurers can no longer pick and choose whom to insure, as they could before the landmark 2010 health law. But they are finding ways to make the sickest pay.
“People with expensive conditions are paying more for insurance so healthy people can pay less,” he said.
PBMs Evolve From Minnows to Whales
In 1967, a year before the first PBM was founded, spending on prescription drugs outside of a hospital in the U.S. totaled around $3.3 billion, compared with more than $600 billion in net payments last year. By 2005, when Medicare expanded to include coverage of outpatient drugs, government and private insurers depended on PBMs’ negotiating power to keep rising drug prices in check.
The Federal Trade Commission and Justice Department allowed the largest PBMs to gobble up competitors and merge with insurers during the Bush and Obama administrations on the grounds that bolstering their powers might rein in prices. The FTC fought state investigations of anti-competitive behavior, saying that pressure on PBMs would benefit consumers.
The FTC under President Joe Biden has switched course, at least partly because of the arrival of Chair Lina Khan, a vigorous proponent of antitrust policy who launched an investigation of the PBMs last June.
It came partly at the request of independent pharmacists, who rely on PBM reimbursements for the drugs they purchase and provide consumers. Thousands of pharmacists complained to the FTC that PBMs force them to accept unfairly low reimbursements — then slam them with opaque rules requiring them to pay back some of the money months later. Pharmacists returned $12.6 billion to PBMs in 2021, according to a recent Medicare Payment Advisory Commission report.
During a recent week, said Ashley Seyfarth, who owns Kare Drug in Aztec, New Mexico, a PBM reclaimed money from one prescription because the paperwork was faxed. It clawed back cash from another sale because Kare had kept the drug on the shelf an extra day, beyond the PBM’s time limit, to accommodate a patient delayed getting to the store.
And her reimbursements are “beyond low,” Seyfarth said. She laughed when asked whether contract terms with the PBMs were negotiable. “You aren’t negotiating anything,” she said. “It’s take it or leave it.”
PBMs “have the right to audit whether contract terms are agreed to,” Angela Banks, vice president of policy at the Pharmaceutical Care Management Association, the PBM trade group, said at a recent conference. “A lot of the complaints about PBMs come from two parties from whom we are extracting money: manufacturers and pharmacists.”
PBM pricing decisions are often murky. According to a recent study, in 2018 Medicare spent $2.6 billion more through PBMs for a year’s worth of 184 generic drugs than they would have cost at Costco. Doctors and hospitals find PBM formularies baffling, with dozens of variations depending on a patient’s health plan.
When Philadelphia-area internist Amy Davis writes a prescription, she has no idea what the pharmacy will bill her patients, she said, or whether a PBM has decided the drug needs prior authorization. Sometimes she doesn’t find out until a patient returns months later saying they skipped the drug because it was too expensive.
“We physicians are completely in the dark,” she said. “And it’s designed that way.”
The PBMs’ growing use of proprietary pharmacies, including mail-order operations, can interfere with the care of patients like Jasmine St. Clair, a 45-year-old restaurant manager and mother of six in Mount Juliet, Tennessee.
In October 2021, St. Clair’s treatment for a rare, non-smoking-related lung cancer was delayed three weeks after PBM giant Express Scripts insisted her prescription be filled by Accredo, the mail-order pharmacy it owns.
In the meantime, her fatigue and lower-back and neck pain became so bad “I couldn’t pick up my daughter, who was 2,” St. Clair said. “And I was really getting scared.”
After St. Clair started the four-pills-twice-a-day regimen, her tumor rapidly shrank. But in January, her husband’s insurance changed and the medications didn’t arrive on time. When she called Accredo to see what was wrong, “they said, ‘You owe $8,000. Would you like to pay by card?’”
The pharmacy attached to her oncology practice straightened out the payment issue and ensured her continued use of the drug, St. Clair said. Her oncologist, Johnetta Blakely, said these are daily occurrences in her practice.
“The problem with the PBMs and the specialty pharmacies they own is that they are so complicated and intertwined it’s hard to figure out what the heck they are doing,” Blakely said. “All this bureaucratic stuff is a distraction and takes away from things I could be doing, like asking Jasmine about her kids.”
What’s the Remedy?
Bipartisan House and Senate bills would require PBMs to reimburse pharmacies serving Medicaid patients based on an authorized price list, rather than using standards that allegedly allow PBMs to lowball pharmacies. The Congressional Budget Office has estimated the bills would save the federal government $1 billion over 10 years. Another Senate bill would require PBMs to report more of their earnings to the FTC, and would ban deceptive and unfair fees.
But PBMs have shown themselves adept at finding ways around regulation. A federal rule scheduled to take effect next year would curtail PBM “clawbacks” on independent pharmacies. But PBM contracts sent out to pharmacies in recent weeks get around that by lowering reimbursement fees and putting a percentage of their payments to pharmacies into a kind of escrow, said Douglas Hoey, CEO of the National Community Pharmacists Association.
When the Trump administration considered banning brand-name drug rebates in 2017, PBMs set up companies in Ireland and Switzerland to take over the negotiations and purchases. Doing so offered a tax advantage and allowed the PBMs to avoid scrutiny of the quantity and nature of those deals. Recently, Express Scripts set up another company to purchase generic drugs, in the Cayman Islands.
And PBMs appear adept at moving money from one pocket to another. “Yesterday’s rebates are today’s fees and potentially tomorrow’s something else,” said John O’Brien, CEO of the pharmaceutical industry-funded research group, the National Pharmaceutical Council.
Every arrangement that PBMs make with manufacturers, employers, and insurers is secret and proprietary, said Barak Richman, a Duke University Law School professor. This makes it nearly impossible to examine what kind of deals PBMs are making.
Antitrust law could be brought to bear on the PBMs, Richman said. And the Biden administration has shown an eagerness to possibly reverse mergers that have increased PBM clout. The Justice Department has taken similar steps.
But federal officials will have to move fast to slow the PBMs. Insurers that don’t have PBMs as part of their business have been shrinking in recent years because of the growing clout and buying power of the companies.
“I predict that any health insurer that doesn’t have a PBM is going to disappear in 10 years,” said Neeraj Sood, a professor at the University of Southern California Sol Price School of Public Policy. “Otherwise, there is no way to compete with the big three.”
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Marihuana legal es más potente que nunca pero no está bien regulada
La marihuana y otros productos que contienen THC, el principal ingrediente psicoactivo de la planta, se han vuelto más potentes y peligrosos a medida que la legalización los ha vuelto más accesibles.
Décadas atrás, el contenido de THC de la hierba solía ser inferior al 1,5%. Hoy, algunos productos tienen más de un 90%.
La marihuana y otros productos que contienen THC, el principal ingrediente psicoactivo de la planta, se han vuelto más potentes y peligrosos a medida que la legalización los ha vuelto más accesibles.
Décadas atrás, el contenido de THC de la hierba solía ser inferior al 1,5%. Hoy, algunos productos tienen más de un 90%.
La euforia de antaño ha dado paso a algo más alarmante. Cientos de miles de personas llegan a salas de emergencias por crisis relacionadas con la marihuana, y millones sufren trastornos psicológicos vinculados al consumo de cannabis, según investigaciones federales.
Pero los organismos reguladores no están a la altura.
En los estados que permiten la venta y el consumo de la marihuana y sus derivados, la protección al consumidor no es consistente.
“En muchos estados, los productos tienen una etiqueta de advertencia y poco más por parte de las entidades reguladoras”, dijo Cassin Coleman, vicepresidente del comité de asesoramiento científico de la Asociación Nacional de la Industria del Cannabis.
En general, el gobierno federal no ha intervenido. Sigue prohibiendo la marihuana como sustancia catalogada en la Lista 1 —como droga sin uso médico aceptado y con un alto riesgo de abuso— en virtud de la Ley de Sustancias Controladas (CSA). Pero en lo que respecta a la venta de cannabis, que muchos estados han legalizado, no regula características como la pureza o la potencia.
La Administración de Drogas y Alimentos (FDA) “básicamente se ha cruzado de brazos y no ha cumplido con su deber de proteger la salud pública”, afirmó Eric Lindblom, de la Facultad de Derecho de la Universidad de Georgetown que anteriormente trabajó en el Centro para Productos del Tabaco de la FDA.
La marihuana se ha transformado profundamente desde que generaciones de estadounidenses la usaron por primera vez.
El cannabis se cultiva para suministrar dosis mucho más altas de THC. En 1980, el contenido de THC de la marihuana confiscada era inferior al 1,5%. Hoy en día, muchas variedades de flores de cannabis —la materia vegetal que se puede fumar en un porro— tienen más de un 30% de THC.
Recientemente, en un dispensario de California el menú incluía una variedad con un 41% de THC.
La legalización también ha abierto la puerta a productos que se extraen de la marihuana pero que no siquiera parecidos: concentrados de THC aceitosos, cerosos o cristalinos que se calientan e inhalan mediante el vapeo o el dab, utilizando dispositivos parecidos a un soplete.
Los concentrados actuales pueden tener más de un 90% de THC. Algunos se anuncian como THC casi puro.
Pocos personifican la expansión de la marihuana de forma tan clara como John Boehner, ex presidente de la Cámara de Representantes de Estados Unidos. El republicano de Ohio se opuso durante mucho tiempo a la marihuana y, en 2011, se declaró “inalterablemente contrario” a su legalización.
Ahora forma parte del consejo directivo de Acreage Holdings, un productor de derivados de la marihuana.
Y Acreage Holdings ilustra la evolución del sector. Su marca Superflux comercializa un producto para vapear —”resina pura en un formato cómodo e instantáneo”— y concentrados como “budder”, “sugar”, “shatter” y “wax”. La empresa anuncia su concentrado de “THCa cristalino” como “lo último en potencia”.
Según el Instituto Nacional sobre el Abuso de Drogas, las concentraciones más elevadas entrañan mayores riesgos. “Los riesgos de dependencia física y adicción aumentan con la exposición a altas concentraciones de THC, y las dosis más altas de THC tienen más probabilidades de producir ansiedad, agitación, paranoia y psicosis”, se explica en su sitio web.
En 2021, 16,3 millones de personas en Estados Unidos —el 5,8% de las personas de 12 años en adelante— habían sufrido un trastorno por consumo de marihuana en el último año, según una encuesta publicada en enero por el Departamento de Salud y Servicios Humanos (HHS).
Esta cifra es muy superior a la suma de los trastornos por consumo de cocaína, heroína, metanfetamina, estimulantes de venta bajo receta, como Adderall, o analgésicos recetados, como fentanilo y OxyContin.
Otras drogas son más peligrosas que la marihuana, y la mayoría de las personas afectadas por su consumo padecieron un caso leve. Pero aproximadamente 1 de cada 7 —más de 2,6 millones de personas— padecieron un caso grave, según la encuesta federal.
La mayoría de los médicos equiparan el término “trastorno grave por consumo de sustancias” con la adicción, señaló Wilson Compton, subdirector del Instituto Nacional sobre el Abuso de Drogas.
El trastorno por consumo de cannabis “puede ser devastador”, afirmó Smita Das, psiquiatra de Stanford y presidenta de un consejo sobre adicciones de la Asociación Americana de Psiquiatría.
Das dijo que ha visto vidas destrozadas por el cannabis: personas de éxito que han perdido familias y trabajos. “Se encuentran en una situación en la que no saben cómo han llegado, porque sólo era un porro, sólo era cannabis, y no se suponía que el cannabis les creara adicción”, explicó Das.
Entre los diagnósticos médicos atribuidos a la marihuana figuran la “dependencia del cannabis con trastorno psicótico con delirios” y el síndrome de hiperémesis cannabinoide, una forma de vómito persistente.
Se estima que unas 800,000 personas realizaron visitas a emergencias relacionadas con la marihuana en 2021, según un estudio del gobierno publicado en diciembre de 2022.
Derecho a desintoxicación.
Un padre de Colorado pensó que era cuestión de tiempo para que el cannabis matara a su hijo.
En la primavera de 2021, el adolescente pasó un semáforo en rojo, chocó contra otro auto —resultando heridos él y el otro conductor— y huyó del lugar, según recordó el padre en una entrevista.
En los restos del accidente, el padre encontró porros, envases vacíos de un concentrado de THC de alta potencia conocido como “wax” y un vaporizador de THC.
En el teléfono móvil de su hijo descubrió mensajes de texto y decenas de referencias al “dabbing” y a la hierba. El adolescente dijo que había estado fumando antes del accidente y que intentó suicidarse.
Semanas después, la policía ordenó su ingreso involuntario en un hospital para una evaluación psiquiátrica. Según un informe policial, creía que lo perseguían francotiradores de un cártel de drogas.
El médico que evaluó al adolescente le diagnosticó “abuso de cannabis”.
“Deja de consumir dabs o wax, ya que pueden volverte extremadamente paranoico”, escribió el médico. “Vete directamente al programa de desintoxicación que elijas”.
Según el relato del padre, en los dos últimos años el adolescente sufrió varias retenciones involuntarias, docenas de encuentros con la policía, repetidos encarcelamientos y una serie de estadías en centros de tratamiento hospitalario.
A veces parecía fuera de la realidad, y enviaba mensajes de texto diciendo que Dios le hablaba y le daba superpoderes.
Los daños también fueron económicos. Los reclamos al seguro médico por su tratamiento ascendieron a casi $600,000 y los gastos de la familia llegaron a casi $40,000 hasta febrero.
En las entrevistas para este artículo, el padre habló bajo condición de anonimato para no perjudicar la recuperación de su hijo.
Está convencido de que la enfermedad mental de su hijo fue el resultado del consumo de drogas. Dijo que los síntomas remitían cuando su hijo dejaba de consumir THC y volvían cuando usaba de nuevo.
Su hijo tiene ahora 20 años, ha dejado la marihuana y le va bien, dijo el padre, y añadió: "No me cabe la menor duda de que el consumo de cannabis fue lo que le causó la psicosis, los delirios y la paranoia".
Regulación estatal desigual
Ahora, el uso médico de la marihuana es legal en 40 estados y el Distrito de Columbia, y el uso recreativo o para adultos es legal en 22 estados más el Distrito de Columbia, según MJBizDaily, una publicación especializada.
Al principio de la pandemia de covid-19, mientras gran parte de Estados Unidos cerró sus negocios, los dispensarios de marihuana siguieron abiertos. Muchos estados los declararon negocios esenciales.
Pero sólo dos estados que permiten el uso para adultos, Vermont y Connecticut, han puesto límites al contenido de THC —30% para la flor de cannabis y 60% para los concentrados de THC— y eximen de los límites a los cartuchos precargados, dijo Gillian Schauer de la Asociación de Reguladores de Cannabis, un grupo de reguladores estatales.
Algunos estados limitan el número de onzas o gramos que los consumidores pueden comprar. Sin embargo, incluso un poco de marihuana puede equivaler a mucho THC, apuntó Rosalie Liccardo Pacula, profesora de políticas de salud, economía y derecho en la Universidad del Sur de California.
Algunos estados sólo permiten el uso médico de productos con bajo contenido de THC; por ejemplo, en Texas, las sustancias que no contienen más de un 0,5% de THC en peso. Y algunos estados exigen etiquetas de advertencia. En Nueva Jersey, los productos de cannabis con más de un 40% de THC deben declarar: "Este es un producto de alta potencia y puede aumentar el riesgo de psicosis".
La normativa sobre marihuana de Colorado tiene más de 500 páginas. Sin embargo, se enfatizan los límites de las protecciones al consumidor: "Este producto se ha producido sin supervisión reglamentaria en materia de salud, seguridad o eficacia".
Determinar las normas adecuadas puede no ser sencillo. Por ejemplo, las etiquetas de advertencia podrían proteger a la industria de la marihuana de su responsabilidad, al igual que hicieron con las empresas tabacaleras durante años. Poner un tope a la potencia podría limitar las opciones de las personas que toman dosis elevadas para aliviar problemas médicos.
En general, en el ámbito estatal, la industria del cannabis ha frenado los esfuerzos reguladores argumentando que unas normas onerosas dificultarían la competencia entre las empresas legítimas y las ilícitas, explicó Pacula.
Pacula y otros investigadores han pedido al gobierno federal que intervenga.
Meses después de terminar su mandato como comisionado de la FDA, Scott Gottlieb hizo un llamamiento similar.
Al quejarse de que los estados habían llegado "muy lejos mientras el gobierno federal permanecía al margen", Gottlieb pidió "un esquema nacional uniforme para el THC que proteja a los consumidores."
Eso fue en 2019 y poco ha cambiado desde entonces.
¿Dónde está la FDA?
La FDA supervisa los alimentos, los medicamentos recetados, los de venta libre y los dispositivos médicos. Regula el tabaco, la nicotina y los vapes de nicotina. Supervisa las etiquetas de advertencia del tabaco. En interés de la salud y la seguridad públicas, también regula los productos botánicos, productos médicos que pueden incluir material vegetal.
Sin embargo, cuando se trata de la marihuana para fumar, los concentrados de THC derivados del cannabis que se vapean o dabean y los comestibles infundidos con THC, la FDA parece estar muy al margen.
La marihuana medicinal que se vende en los dispensarios no está aprobada por la FDA. La agencia no ha avalado su seguridad o eficacia ni ha determinado la dosis adecuada. No inspecciona las instalaciones donde se producen los productos ni evalúa el control de calidad.
La agencia sí invita a los fabricantes a someter los productos del cannabis a ensayos clínicos y a su proceso de aprobación de medicamentos.
El sitio web de la FDA señala que el THC es el ingrediente activo de dos medicamentos aprobados por la FDA para el tratamiento del cáncer. Aparentemente, sólo por eso la sustancia está bajo la jurisdicción de la FDA.
La FDA tiene "todo el poder que necesita para regular de forma mucho más eficaz los productos de cannabis legalizados por los estados", afirmó Lindblom, ex funcionario de la agencia.
Al menos públicamente, la FDA no le ha prestado atención a los concentrados de THC derivados del cannabis o la hierba fumada en porros, sino más bien en otras sustancias: una variante del THC derivada del cáñamo, que el gobierno federal ha legalizado, y un derivado diferente del cannabis llamado cannabidiol o CBD, que se ha comercializado como terapéutico.
"La FDA se ha comprometido a vigilar el mercado, identificar los productos de cannabis que plantean riesgos y actuar, dentro de nuestras competencias, para proteger al público", declaró Courtney Rhodes, vocera de la FDA.
"Muchos, la mayoría de los productos con THC se ajustan a la definición de marihuana, que es una sustancia controlada. La Drug Enforcement Administration (DEA) regula la marihuana en virtud de la Ley de Sustancias Controladas (CSA). Le remitimos a la DEA para preguntas sobre la regulación y aplicación de las disposiciones de la CSA", escribió Rhodes en un correo electrónico.
La DEA, dependiente del Departamento de Justicia, no respondió a las preguntas formuladas para este artículo.
En cuanto al Congreso, quizá su medida más importante haya sido limitar la aplicación de la prohibición federal.
"Hasta ahora, la respuesta federal a las acciones estatales para legalizar la marihuana ha consistido, sobre todo, en permitir que los estados apliquen sus propias leyes sobre la droga", señaló un informe de 2022 del Servicio de Investigación del Congreso.
En octubre, el presidente Joe Biden ordenó al secretario de Salud y Servicios Humanos y al fiscal general que revisaran la postura del gobierno federal respecto a la marihuana: si debería seguir clasificada entre las sustancias más peligrosas y estrictamente controladas.
En diciembre, Biden firmó un proyecto de ley que ampliaba la investigación sobre la marihuana y obligaba a las agencias federales a estudiar sus efectos. La ley dice que las agencias tienen un año para publicar sus conclusiones.
Algunos defensores de la marihuana dicen que el gobierno federal podría desempeñar un papel más constructivo.
"La NORML no opina que el cannabis sea inocuo, sino que la mejor forma de mitigar sus riesgos potenciales es mediante la legalización, la regulación y la educación pública", afirmó Paul Armentano, subdirector del grupo antes conocido como Organización Nacional para la Reforma de las Leyes sobre la Marihuana (NORML).
"Los productos tienen que someterse a pruebas de pureza y potencia", añadió, y "el gobierno federal podría ejercer cierta supervisión en la concesión de licencias a los laboratorios que prueban esos productos".
Mientras tanto, según Coleman, asesor de la Asociación Nacional de la Industria del Cannabis, los estados se quedan "teniendo que actuar como si fueran USDA + FDA + DEA, todo al mismo tiempo".
¿Y dónde deja eso a los consumidores? Algunos, como Wendy E., jubilada en sus 60 años, luchan contra los efectos de la marihuana.
Wendy, que habló con la condición de que no se revelara su nombre, empezó a fumar marihuana en la secundaria en los años 70 y la convirtió en su estilo de vida durante décadas.
Luego, cuando su estado la legalizó, la compró en dispensarios "y enseguida me di cuenta de que la potencia era mucho mayor que la que yo había consumido tradicionalmente", contó. "Parecía haber aumentado de manera exponencial".
En 2020, explicó, la marihuana legal —mucho más fuerte que la hierba ilícita de su juventud— la llevó a obsesionarse con el suicidio.
Antes, la mujer que se define como "hippie de la madre tierra" encontraba camaradería pasando un porro con sus amigos. Ahora asiste a reuniones de Marihuana Anónimos, con otras personas que se recuperan de esta adicción.
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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Tension Builds in Transgender Policy Debate in Montana
On April 13, Democratic Rep. Zooey Zephyr was sitting in the basement of Montana’s Capitol building reflecting on her time as one of the state’s first two openly transgender legislators.
On April 13, Democratic Rep. Zooey Zephyr was sitting in the basement of Montana’s Capitol building reflecting on her time as one of the state’s first two openly transgender legislators. She wondered whether she needed to display more anger over anti-LGBTQ+ legislation, or whether she should focus on promoting more of what she called “transgender joy.”
“The thing that keeps me up at night is, am I doing a good job for my community?” Zephyr said.
Five days later, the anger bubbled over as Zephyr spoke against amendments from Republican Gov. Greg Gianforte to Senate Bill 99, which would prohibit minors with gender dysphoria from receiving certain medical and surgical treatments. Zephyr said the lawmakers who voted for the measure should be ashamed.
That prompted Republican Majority Leader Sue Vinton to speak. “We will not be shamed by anyone in this chamber,” Vinton said.
“Then the only thing I will say is: If you vote yes on this bill, and yes on these amendments, I hope the next time there’s an invocation, when you bow your heads in prayer, you see the blood on your hands,” Zephyr said in response.
Later that day, the Montana Freedom Caucus, a conservative group of lawmakers, released a statement calling for Zephyr’s censure for using “inappropriate and uncalled-for language.” The release and a Freedom Caucus post on Twitter used male pronouns to refer to Zephyr, leading to fresh outrage by LGBTQ+ supporters accusing Republicans of deliberately misgendering her.
Two days later, Republican House Speaker Matt Regier would not allow Zephyr to speak during a debate on another bill. Regier said it was because she had committed a breach of decorum.
With two weeks to go in the legislative session, Republican lawmakers, who are in the majority, are sponsoring anti-LGBTQ+ bills. There are at least four related measures, including the bill to ban gender-affirming care for minors.
Many similar bills are being heard in conservative-led statehouses across the U.S. The American Civil Liberties Union has tracked more than 460 anti-LGBTQ+ bills so far in 2023 legislative sessions.
Back in the Capitol on April 13, Zephyr stopped at a storytelling event presented by drag performers on the second floor. Parents, children, and supporters sat in folding chairs and on the floor while drag performers read stories.
Zephyr was visibly emotional. A short time later, former Democratic lawmaker Moffie Funk, who also attended the storytelling event, approached Zephyr to thank her for her work.
“I have just been so impressed to see the way Rep. Zephyr has handled questions on the floor, just keeps her calm, stays cool, and is so powerful in her words and so powerful in the way she represents her community and Montana,” Funk said.
Before the session, Zephyr said she had a goal of changing at least one person’s heart on LGBTQ+ issues.
One lawmaker who typically votes in favor of anti-transgender bills told Zephyr about having read something about her in a far-right blog and said, “That doesn’t sound like Zooey; she wouldn’t do that.” The lawmaker, whom Zephyr didn’t name, subsequently stopped reading the blog.
Proponents of measures like SB 99 and House Bill 359, a bill that would have banned minors from drag shows and would have banned events like drag storytelling in public schools or libraries, frame the legislation as necessary to protect children.
In a small victory for LGBTQ+ supporters, HB 359 was amended to remove references to drag performers and now would prohibit minors from attending “adult-oriented” shows.
Democratic Rep. SJ Howell, who is transgender and nonbinary and uses the pronouns “they” and “their,” has been working at the Capitol for a decade, first as a lobbyist and now as a lawmaker representing Missoula. In all their work, Howell said, it’s very clear that relationships matter. Progress is a long game, and it may take years to pass legislation that promotes the rights and recognition of transgender and nonbinary people, Howell said.
One thing that could hinder that progress is the national debate over anti-LGBTQ+ policy proposals.
Erin Reed, who describes herself as a queer writer and content creator, has been tracking the LGBTQ+ bills nationwide and is also Zephyr’s partner of almost a year.
Four years ago, the debate playing out in statehouses was over transgender rights in sports, Reed said, but that’s shifted. Now, a third of the bills target health care — like gender-affirming hormone therapy, mostly related to minors — and the rest focus on banning drag shows or the use of preferred pronouns and bathrooms, or targeting the rights of transgender people in insurance coverage and workplace protections.
But beyond the flood of anti-LGBTQ+ bills, at least 15 states have passed LBGTQ+ protections, Reed estimated.
Howell said it’s challenging being a state representative trying to focus on Montana when so much focus has been on this national issue.
Personally, Howell said, they came to the legislature to build relationships and make good policy, and they see many of their colleagues as friends.
“When the mutual respect isn’t present, it can be deeply frustrating and harmful, and we can do better as a body,” Howell said.
Republican Rep. Neil Duram sits between Zephyr and Howell on the House Judiciary Committee, which has heard all the LGBTQ+ bills this session. He said having both in the legislature better represents Montana.
“If it was just me, and 99 other people like me on the House floor, we may not set the best policy for the people of Montana,” Duram said.
Duram spoke during a House floor session discussing House Bill 361, which would allow classmates to refer to a transgender student by their birth name or gender assigned at birth, unless it crossed into bullying. He said he’s enjoyed getting to know Judiciary seatmate Zephyr and that he’ll make sure people aren’t “inflicting bullying behavior.”
Duram voted for HB 361. He said his decision was encouraged by his community.
“And, ultimately, that’s where my conscience is going to sit,” he said.
On the morning of April 13, Howell and Zephyr were hearing testimony before the House Judiciary Committee on a bill that would define sex in Montana law, Senate Bill 458. The vibe in the room felt heavy.
Sen. Carl Glimm, sponsor of SB 458, said the bill seeks to define the terms “sex,” “male,” and “female” in state law. Glimm said the bill was necessary because people conflate sex and gender and maintained the bill wasn’t about gender fluidity or expression.
“Gender is obviously something different than biological sex. Biological sex is immutable and that means you can’t change it, and there’s only two biological sexes,” Glimm said. “You may claim to be able to change your gender or express your gender in a different way, but you can never change your biological sex.”
LGBTQ+ advocates, like the Montana Human Rights Network, say that by defining people as simply male and female, the bill would legislate “transgender, nonbinary, and intersex people out of existence.” The Montana Human Rights Network said the definitions used in SB 458 were based “on an unscientific and archaic understanding of basic biology.”
About an hour after the hearing, people gathered outside the Capitol in an April snowstorm for a drag show.
Performers lip-synced for a crowd ranging from kids to college students to retired folks who were waving rainbow-colored flags and carrying umbrellas.
As “Rise Up” by Andra Day played in the background, Katie Fire Thunder said she came to the drag show from Bozeman to show her allyship with the LGBTQ+ community.
Fire Thunder called this session’s anti-LGBTQ+ bills “disgusting,” and said they don’t represent Montana or what young people care about. But having both Zephyr and Howell serving in the Capitol has made a major difference, Fire Thunder said.
“When things are really hard and there’s all these hateful people, they’re a little glimmer of hope,” Fire Thunder said.
Kole Burdick, 20, also of Bozeman, said it’s important to “uplift queer people and show moments of queer joy,” and commended Zephyr and Howell for their work.
“I think they’ve been working really hard to protect our community and keep our community safe, and I really appreciate them for that,” Burdick said.
Keely Larson is the KFF Health News fellow for the UM Legislative News Service, a partnership of the University of Montana School of Journalism, the Montana Newspaper Association, and KFF Health News. Larson is a graduate student in environmental and natural resources journalism at the University of Montana.
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 12 months ago
States, The Health Law, Legislation, Montana, Transgender Health
Montana May Require Insurers to Cover Monitoring Devices for Diabetes
In between sets of tumbling warmups, Adrienne Prashar crossed the gym to where she had stashed her diabetes supplies and tested her blood sugar. Prashar, who was diagnosed with Type 1 diabetes the day before her 13th birthday, said tumbling usually drops her blood sugar levels.
Prashar, now 14, did a finger stick, saw her blood sugar was 127, and went back to the mat. For most people with diabetes, the target range is about 80-130, and up to 180 two hours after meals.
Prashar doesn’t have to check her blood sugar often. She wears a continuous glucose monitor, or CGM, that gives her blood glucose readings on her phone every five minutes. When she’s feeling differently than her CGM is showing, as on that March day at the gym, she checks her level by doing a finger stick.
But most of the time, she simply glances at her phone to see whether her numbers are trending low or high, which beats repeatedly pricking her finger, she said.
“I would hate it so much,” Prashar said. “It’s such a pain and it’s harder to see trends.”
Montana lawmakers are considering a bill that would require insurance companies to cover CGMs for people with Type 1 and Type 2 diabetes. Multiple studies and experts back up the effectiveness of the devices, showing better blood test results, fewer long-term complications, and a reduction in health care costs.
Studies show CGMs can greatly benefit people with Type 1 diabetes. There are also promising results for people with Type 2 diabetes, the more prevalent of the two types, but the research is limited compared with that on Type 1.
House Bill 758 has broad support from lawmakers, but it faces opposition from insurance companies and some providers. That opposition focuses on the cost, whether a CGM is medically necessary at all stages of diabetes, and the possibility that CGM manufacturers will raise their prices if there is an insurance mandate.
CGMs can be worn on the legs, stomach, or arms, and they stay in place with an adhesive patch. A thin tube goes under the skin and measures blood glucose levels from tissue fluid. The data is transmitted via Bluetooth to a phone or similar device. Instead of a finger prick, which provides a reading for a single point in time, a CGM gives the wearer a continuous stream of data.
According to GoodRx Health, CGMs can cost between $1,000 and $3,000 each year out-of-pocket.
Blue Cross and Blue Shield of Montana, the state’s largest insurer, estimates the bill, if passed, would cost the organization nearly $5 million a year, spokesperson John Doran said.
CGMs aren’t medically necessary in all circumstances, Doran said, and medical necessity should be determined through a partnership between provider and payer. But Doran said that he understands there are instances in which a CGM may be necessary and that Blue Cross already covers CGMs in those cases.
“These things are a convenience,” Doran said. “They provide you real-time information and there is some benefit to a person’s lifestyle to these monitors.”
Lawmakers in several states are considering bills to regulate coverage of CGMs, and Illinois’ governor signed one such bill into law last year.
A study published in the Journal of Diabetes Science and Technology in 2022 says about 30 million Americans have diabetes, a condition in which a person’s body can’t make enough insulin (as in Type 1) or use it effectively (as in Type 2). By 2030, the study estimated, 55 million people in the U.S. will have diabetes, with total medical and societal costs of more than $622 billion — a 53% increase from 2015. According to the American Diabetes Association, nearly 78,000 Montanans have been diagnosed with diabetes.
Various studies, diabetes educators, and health care providers say that CGMs can help people with diabetes reduce their A1C levels, a common measure of blood sugar levels used in diabetes management. Proper management can reduce complications from diabetes — like retinopathy, heart attack, and nerve damage — that lead to higher costs in the health care system through emergency room visits and hospitalizations.
Dr. Brian Robinson, an endocrinologist at St. Peter’s Health in Helena, said supplies for people with Type 1 diabetes are generally covered by insurance. When he considers recommending a glucose monitor for a patient, he said, the decision is driven by insurance rules that are informed by the American Diabetes Association’s standards of care.
“My patients are better because of CGMs, there’s no doubt about that,” Robinson said. But he noted the science doesn’t yet support his opinion that CGMs should be given to everyone with diabetes, no matter what.
Not all physicians, especially in endocrinology, agree that a person with Type 2 diabetes needs a continuous glucose monitor, Robinson said. But if a person needs a shot each day to manage diabetes, he said, that patient should have access to a CGM.
Lisa Ranes, manager of the diabetes, endocrinology, and metabolism center at Billings Clinic, said the benefits of a CGM are the same for people with Type 1 and Type 2 diabetes.
Many studies have shown that CGMs are just as effective for patients on lower quantities of insulin, like some people with Type 2 diabetes, as for people with Type 1 diabetes, who rely on insulin throughout the day.
“It gives patients that complete picture to help them make the decisions on what they need to do to keep their blood sugar safe,” Ranes said, giving examples like upping the frequency or dose of insulin, having some food, or exercising.
For people with Type 2 diabetes, Ranes said, CGMs could be helpful in early diagnosis. Type 2 diabetes is progressive, Ranes said, so the sooner it is under control, the better.
When Cass Mitchell, 76, was diagnosed with Type 2 diabetes over 30 years ago, her doctor told her that people with Type 2 diabetes don’t live long because they have a hard time managing their care.
Mitchell, who lives in Helena, warmed to finger pricks. But test strips were expensive, about $1 each at the time, she said.
About 10 years ago, she got a CGM. Mitchell went from testing maybe twice a day to looking at her blood sugar on an app 20 to 25 times each day. She said she’s more in tune with her diabetes and uses her device’s time-in-range reports — showing how often blood glucose stays within a set range — to make lifestyle changes.
Mitchell has lowered her A1C from around 11% to 7%. According to the ADA, the target for most adults with diabetes is less than 7%.
Mitchell’s device is covered under Medicare and supplemental insurance and would remain so with the passage of HB 758. She said if she had to pay out-of-pocket she wouldn’t be able to afford her CGM and that she was excited about the potential of the bill to give more people access to CGMs.
Dr. Hayley Miller, medical director of Mountain States Diabetes in Missoula, initially thought HB 758 sounded good, but now she isn’t so sure. She thinks the biggest risk of the bill passing is that prices for CGMs go up.
“It seems like I’m against it, but it really is, when insurance gets involved everything gets tricky,” Miller said.
Emma Peterson, a former diabetes educator for St. Vincent Healthcare in Billings and Providence Endocrinology in Missoula, said most people working in diabetes care think everyone diagnosed should just have a continuous glucose monitor.
“At the end of the day, both forms of diabetes and all the other many forms of diabetes have the same complications and still face the same struggles of trying to keep blood sugars in range,” Peterson said.
Keely Larson is the KHN fellow for the UM Legislative News Service, a partnership of the University of Montana School of Journalism, the Montana Newspaper Association, and Kaiser Health News. Larson is a graduate student in environmental and natural resources journalism at the University of Montana.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.
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2 years 1 week ago
Health Care Costs, Insurance, States, diabetes, Legislation, Montana
In Texas, Medicaid Coverage Ends Soon After Childbirth. Will Lawmakers Allow More Time?
Victoria Ferrell Ortiz learned she was pregnant during summer 2017. The Dallas resident was finishing up an AmeriCorps job with a local nonprofit, which offered her a small stipend to live on but no health coverage. She applied for Medicaid so she could be insured during the pregnancy.
“It was a time of a lot of learning, turnaround, and pivoting for me, because we weren’t necessarily expecting that kind of life change,” she said.
Ferrell Ortiz would have liked a little more guidance to navigate the application process for Medicaid. She was inundated with forms. She spent days on end on the phone trying to figure out what was covered and where she could go to get care.
“Sometimes the representative that I would speak to wouldn’t know the answer,” she said. “I would have to wait for a follow-up and hope that they actually did follow up with me. More than 476,000 pregnant Texans are currently navigating that fragmented, bureaucratic system to find care. Medicaid provides coverage for about half of all births in the state — but many people lose eligibility not long after giving birth.
Many pregnant people rely on Medicaid coverage to get access to anything from prenatal appointments to prenatal vitamins, and then postpartum follow-up. Pregnancy-related Medicaid in Texas is available to individuals who make under $2,243 a month. But that coverage ends two months after childbirth — and advocates and researchers say that strict cutoff contributes to rates of maternal mortality and morbidity in the state that are higher than the national average.
They support a bill moving through the Texas legislature that would extend pregnancy Medicaid coverage for a full 12 months postpartum.
Texas is one of 11 states that has chosen not to expand Medicaid to its population of uninsured adults — a benefit offered under the Affordable Care Act, with 90% of the cost paid for by the federal government. That leaves more than 770,000 Texans in a coverage gap — they don’t have job-based insurance nor do they qualify for subsidized coverage on healthcare.gov, the federal insurance marketplace. In 2021, 23% of women ages 19-64 were uninsured in Texas.
Pregnancy Medicaid helps fill the gap, temporarily. Of the nearly half a million Texans currently enrolled in the program, the majority are Hispanic women ages 19-29.
Texans living in the state without legal permission and lawfully present immigrants are not eligible, though they can get different coverage that ends immediately when a pregnancy does. In states where the Medicaid expansion has been adopted, coverage is available to all adults with incomes below 138% of the federal poverty level. For a family of three, that means an income of about $34,300 a year.
In Texas, childless adults don’t qualify for Medicaid at all. Parents can be eligible for Medicaid if they’re taking care of a child who receives Medicaid, but the income limits are low. To qualify, a three-person household with two parents can’t make more than $251 a month.
For Ferrell Ortiz, the hospitals and clinics that accepted Medicaid near her Dallas neighborhood felt “uncomfortable, uninviting,” she said. “A space that wasn’t meant for me” is how she described those facilities.
Later she learned that Medicaid would pay for her to give birth at an enrolled birthing center.
“I went to Lovers Lane Birth Center in Richardson,” she said. “I’m so grateful that I found them because they were able to connect me to other resources that the Medicaid office wasn’t.”
Ferrell Ortiz found a welcoming and supportive birth team, but the Medicaid coverage ended two months after her daughter arrived. She said losing insurance when her baby was so young was stressful. “The two-months window just puts more pressure on women to wrap up things in a messy and not necessarily beneficial way,” she said.
In the 2021 legislative session, Republican Gov. Greg Abbott signed a bill extending pregnancy Medicaid coverage from two months to six months postpartum, pending federal approval.
Last August, The Texas Tribune reported that extension request had initially failed to get federal approval, but that the Centers for Medicare & Medicaid Services had followed up the next day with a statement saying the request was still under review. The Tribune reported at the time that some state legislators believed the initial application was not approved “because of language that could be construed to exclude pregnant women who have abortions, including medically necessary abortions.”The state’s application to extend postpartum coverage to a total of six months is still under review.
The state’s Maternal Mortality and Morbidity Review Committee is tasked with producing statewide data reports on causes of maternal deaths and intervention strategies. Members of that committee, along with advocates and legislators, are hoping this year’s legislative session extends pregnancy Medicaid to 12 months postpartum.
Kari White, an associate professor at the University of Texas-Austin, said the bureaucratic challenges Ferrell Ortiz experienced are common for pregnant Texans on Medicaid.
“People are either having to wait until their condition gets worse, they forgo care, or they may have to pay out-of-pocket,” White said. “There are people who are dying following their pregnancy for reasons that are related to having been pregnant, and almost all of them are preventable.”
In Texas, maternal health care and Pregnancy Medicaid coverage “is a big patchwork with some big missing holes in the quilt,” White said. She is also lead investigator with the Texas Policy Evaluation Project (TxPEP), a group that evaluates the effects of reproductive health policies in the state. A March 2022 TxPEP study surveyed close to 1,500 pregnant Texans on public insurance. It found that “insurance churn” — when people lose health insurance in the months after giving birth — led to worse health outcomes and problems accessing postpartum care.
Chronic disease accounted for almost 20% of pregnancy-related deaths in Texas in 2019, according to a partial cohort review from the Texas Maternal Mortality and Morbidity Review Committee’s report. Chronic disease includes conditions such as high blood pressure and diabetes. The report determined at least 52 deaths were related to pregnancy in Texas during 2019. Serious bleeding (obstetric hemorrhage) and mental health issues were leading causes of death.
“This is one of the more extreme consequences of the lack of health care,” White said.
Black Texans, who make up close to 20% of pregnancy Medicaid recipients, are also more than twice as likely to die from a pregnancy-related cause than their white counterparts, a statistic that has held true for close to 10 years with little change, according to the MMMRC report.
Stark disparities such as that can be traced to systemic issues, including the lack of diversity in medical providers; socioeconomic barriers for Black women such as cost, transportation, lack of child care and poor communication with providers; and shortcomings in medical education and providers’ implicit biases — which can “impact clinicians’ ability to listen to Black people’s experiences and treat them as equal partners in decision-making about their own care and treatment options,” according to a recent survey.
Diana Forester, director of health policy for the statewide organization Texans Care for Children, said Medicaid coverage for pregnant people is a “golden window” to get care.
“It’s the chance to have access to health care to address issues that maybe have been building for a while, those kinds of things that left unaddressed build into something that would need surgery or more intensive intervention later on,” she said. “It just feels like that should be something that’s accessible to everyone when they need it.”
Extending health coverage for pregnant people, she said, is “the difference between having a chance at a healthy pregnancy versus not.”
As of February, 30 states have adopted a 12-month postpartum coverage extension so far, according to a KFF report, with eight states planning to implement an extension.
“We’re behind,” Forester said of Texas. “We’re so behind at this point.”
Many versions of bills that would extend pregnancy Medicaid coverage to 12 months have been filed in the legislature this year, including House Bill 12 and Senate Bill 73. Forester said she feels “cautiously optimistic.”
“I think there’s still going to be a few little legislative issues or land mines that we have to navigate,” she said. “But I feel like the momentum is there.”
Ferrell Ortiz’s daughter turns 5 this year. Amelie is artistic, bright, and vocal in her beliefs. When Ferrell Ortiz thinks back on being pregnant, she remembers how hard a year it was, but also how much she learned about herself.
“Giving birth was the hardest experience that my body has physically ever been through,” she said. “It was a really profound moment in my health history — just knowing that I was able to make it through that time, and that it could even be enjoyable — and so special, obviously, because look what the world has for it.”
She just wishes people, especially people of color giving birth, could get the health support they need during a vulnerable time.
“If I was able to talk to people in the legislature about extending Medicaid coverage, I would say to do that,” she said. “It’s an investment in the people who are raising our future and completely worth it.”
This story is part of a partnership that includes KERA, NPR, and KHN.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.
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This story can be republished for free (details).
2 years 2 weeks ago
Health Care Costs, Insurance, Medicaid, Multimedia, States, Audio, Legislation, Pregnancy, texas, Women's Health