KFF Health News' 'What the Health?': More Medicaid Messiness
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.
Federal officials have instructed at least 30 states to reinstate Medicaid and Children’s Health Insurance Program coverage for half a million people, including children, after an errant computer program wrongly determined they were no longer eligible. It’s just the latest hiccup in the yearlong effort to redetermine the eligibility of beneficiaries now that the program’s pandemic-era expansion has expired.
Meanwhile, the federal government is on the verge of a shutdown, as a small band of House Republicans resists even a short-term spending measure to keep the lights on starting Oct. 1. Most of the largest federal health programs, including Medicare, have other sources of funding and would not be dramatically impacted — at least at first. But nearly half of all employees at the Department of Health and Human Services would be furloughed, compromising how just about everything runs there.
This week’s panelists are Julie Rovner of KFF Health News, Rachel Roubein of The Washington Post, Sandhya Raman of CQ Roll Call, and Sarah Karlin-Smith of Pink Sheet.
Panelists
Sarah Karlin-Smith
Pink Sheet
Sandhya Raman
CQ Roll Call
Rachel Roubein
The Washington Post
Among the takeaways from this week’s episode:
- Officials in North Carolina announced the state will expand its Medicaid program starting on Dec. 1, granting thousands of low-income residents access to health coverage. With North Carolina’s change, just 10 states remain that have not expanded the program — yet, considering those states have resisted even as the federal government has offered pandemic-era and other incentives, it is unlikely more will follow for the foreseeable future.
- The federal government revealed that nearly half a million individuals — including children — in at least 30 states were wrongly stripped of their health coverage under the Medicaid unwinding. The announcement emphasizes the tight-lipped approach state and federal officials have taken to discussing the in-progress effort, though some Democrats in Congress have not been so hesitant to criticize.
- The White House is pointing to the possible effects of a government shutdown on health programs, including problems enrolling new patients in clinical trials at the National Institutes of Health and conducting food safety inspections at the FDA.
- Americans are grappling with an uptick in covid cases, as the Biden administration announced a new round of free test kits available by mail. But trouble accessing the updated vaccine and questions about masking are illuminating the challenges of responding in the absence of a more organized government effort.
- And the Biden administration is angling to address health costs at the executive level. The White House took its first step last week toward banning medical debt from credit scores, as the Federal Trade Commission filed a lawsuit to target private equity’s involvement in health care.
- Plus, the White House announced the creation of its first Office of Gun Violence Prevention, headed by Vice President Kamala Harris.
Also this week, Rovner interviews KFF Health News’ Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month,” about a hospital bill that followed a deceased patient’s family for more than a year. If you have an outrageous or infuriating medical bill you’d like to send us, you can do that here.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:
Julie Rovner: JAMA Internal Medicine’s “Comparison of Hospital Online Price and Telephone Price for Shoppable Services,” by Merina Thomas, James Flaherty, Jiefei Wang, et al.
Sarah Karlin-Smith: The Los Angeles Times’ “California Workers Who Cut Countertops Are Dying of an Incurable Disease,” by Emily Alpert Reyes and Cindy Carcamo.
Rachel Roubein: KFF Health News’ “A Decades-Long Drop in Teen Births Is Slowing, and Advocates Worry a Reversal Is Coming,” by Catherine Sweeney.
Sandhya Raman: NPR’s “1 in 4 Inmate Deaths Happen in the Same Federal Prison. Why?” by Meg Anderson.
Also mentioned in this week’s episode:
- KFF Health News’ “Diagnosis: Debt,” by Noam N. Levey and KFF Health News, NPR, and CBS staff.
- The New York Times’ “In Hospitals, Viruses Are Everywhere. Masks Are Not,” by Apoorva Mandavilli.
click to open the transcript
Transcript: More Medicaid Messiness
KFF Health News’ ‘What the Health?’Episode Title: More Medicaid MessinessEpisode Number: 316Published: Sept. 27, 2023
[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]
Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping early this week, on Wednesday, Sept. 27, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this, so here we go.
We are joined today via video conference by Rachel Roubein of The Washington Post.
Rachel Roubein: Good morning. Thanks for having me.
Rovner: Sandhya Raman of CQ Roll Call.
Sandhya Raman: Good morning.
Rovner: And Sarah Karlin-Smith of the Pink Sheet.
Sarah Karlin-Smith: Hi, everybody.
Rovner: Later in this episode we’ll have my KFF Health News-NPR “Bill of the Month” interview with Samantha Liss. This month’s bill is literally one that followed a patient to his family after his death. But first, the news. I want to start with Medicaid this week. North Carolina, which approved but didn’t fund its Medicaid expansion earlier this year, approved a budget this week that will launch the expansion starting Dec. 1. That leaves just 10 states that have still not expanded the program to, mostly, low-income adults, since the Affordable Care Act made it possible in, checks notes, 2014. Any other holdout states on the horizon? Florida is a possibility, right, Rachel?
Roubein: Yes. There’s only technically three states that can do ballot measures. Now North Carolina, I believe, was the first state to actually pass through the legislature since Virginia in 2018. A lot of the most recent states, seven conservative-leaning states, instead pursued the ballot measure path. In Florida, advocates have been eyeing a 2026 ballot measure. But the one issue in Florida is that they need a 60% threshold to pass any constitutional amendment, so that is pretty, pretty high and would take a lot of voter support.
Rovner: And they would need a constitutional amendment to expand Medicaid?
Roubein: A lot of the states have been going the constitutional amendment route in terms of Medicaid in recent years. Because what they found was some legislatures would come back and try and change it, but if it’s a constitutional amendment, they weren’t able to do that. But a lot of the holdout states don’t have ballot measure processes, where they could do this — like Alabama, Georgia, etc.
Raman: Kind of just echoing Rachel that this one has been interesting just because it had come through the legislature. And even with North Carolina, it’s been something that we’ve been eyeing for a few years, and that they’d gone a little bit of the way, a little bit of the way a few times. And it was kind of the kind of gettable one within the ones that hadn’t expanded. And the ones we have left, there’s just really not been much progress at all.
Rovner: I would say North Carolina, like Virginia, had a Democratic governor that ran on this and a Republican legislature, or a largely Republican legislature, hence the continuing standoff. It took both states a long time to get to where they had been trying to go. And you’re saying the rest of the states are not split like that?
Raman: Yeah, I think it’ll be a much more difficult hill to climb, especially when, in the past, we had more incentives to expand with some of the previous covid relief laws, and they still didn’t bite. So it’s going to be more difficult to get those.
Rovner: No one’s holding their breath for Texas to expand. Anyway, while North Carolina will soon start adding people to its Medicaid rolls, the rest of the states are shedding enrollees who gained coverage during the pandemic but may no longer be eligible. And that unwinding has been bumpy to say the least. The latest bump came last week when the Department of Health and Human Services revealed that more than half a million people, mostly children, had their coverage wrongly terminated by as many as 30 states. It seems a computer program failed to note that even if a parent’s income was now too high to qualify, that same income could still leave their children eligible. Yet the entire family was being kicked off because of the way the structure of the program worked. I think the big question here is not that this happened, but that it wasn’t noticed sooner. It should have been obvious — children’s eligibility for Medicaid has been higher than adults since at least the 1980s. This unwinding has been going on since this spring. How is this only being discovered now? It’s September. It’s the end of September.
Roubein: Yeah. I mean, this was something advocates who have been closely watching this have been ringing the alarm bells for a while, and then it took time. CMS [the Centers for Medicare & Medicaid Services] had put something out, I believe it was roughly two weeks before they actually then had the roughly half a million children regain coverage — they had put out a, “OK, well, we’re exploring which states.” And lots of reporters were like, “OK, well which state is this an issue?” So yeah, the process seemed like it took some time here.
Rovner: I know CMS has been super careful. I mean, I think they’re trying not to politicize this, because they’ve been very careful not to name states, and in many cases who they know have been wrongly dropping people. I guess they’re trying to keep it as apolitical as possible, but I think there are now some advocates who worry that maybe CMS is being a little too cautious.
Karlin-Smith: Yeah, I think from the other side too, if you’ve talked to state officials, they’re also trying to be really cautious and not criticize CMS. So it seems like both sides are not wanting to go there. But I mean some Democrats in Congress have been critical of how the effort has gone.
Rovner: Yeah. And of course, if the government shuts down, as seems likely at the end of this week, that’s not going to make this whole process any easier, right? The states will still get to do what the states are doing. Their shutdown efforts, or their re-qualification efforts, are not federally funded, but the people at CMS are.
Karlin-Smith: Yeah, that’ll just throw another thorn in this as we’re getting very, very likely headed towards a shutdown at this point on the 27th. So I think that’ll be another barrier for them regardless. And I mean, most CMS money isn’t even affected by the yearly budget anyways because it’s mandatory funding, but that’ll be a barrier for sure.
Rovner: So, speaking of the government shutdown, it still seems more likely than not that Congress will fail to pass either any of the 12 regular spending bills or a temporary measure to keep the lights on when the fiscal year ends at midnight Sunday. That would lead to the biggest federal shutdown since 2013 when, fun fact, the shutdown was an attempt to delay the rollout of the Affordable Care Act. What happens to health programs if the government closes? It’s kind of a big confusing mess, isn’t it?
Roubein: Yeah, well, what we know that would definitely continue and in the short term is Medicare and Medicaid, Obamacare’s federal insurance marketplace. Medicaid has funding for at least the next three months, and there’s research developing vaccines and therapeutics that HHS, they put out their kind of contingency “What happens if there’s a shutdown?” plan. But there’s some things that the White House and others are kind of trying to point to that would be impacted, like the National Institutes of Health may not be able to enroll new patients in clinical trials, the FDA may need to delay some food safety inspections, etc.
Rovner: Sarah, I actually forgot because, also fun fact, the FDA is not funded through the rest of the spending bill that includes the Department of Health and Human Services. It’s funded through the agriculture bill. So even though HHS wasn’t part of the last shutdown in 2018 and 2019, because the HHS funding bill had already gone through, the FDA was sort of involved, right?
Karlin-Smith: Right. So FDA is lumped with the USDA, the Agriculture Department, for the purposes of congressional funding, which is always fun for a health reporter who has to follow both of those bills. But FDA is always kind of a unique one with shutdown, because so much of their funding now is user fees, particularly for specific sections. So the tobacco part of FDA is almost 100% funded by user fees, so they’re not really impacted by a shutdown. Similarly, a lot of drug, medical device applications, and so forth also are totally funded by user fees, so their reviews keep going. That said, the way user fees are, they’re really designated to specific activities.
So, where there isn’t user fees and it’s not considered a critical kind of public health threat, things do shut down, like Rachel mentioned: a lot of food work and inspections, and even on the drug and medical device side, some activities that are related that you might think would continue don’t get funded.
Rovner: Sandhya, is there any possibility that this won’t happen? And that if it does happen, that it will get resolved anytime soon?
Raman: At this point, I don’t think that we can navigate it. So last night, the Senate put out their bipartisan proposal for a continuing resolution that you would attach as an amendment to the FAA, the Federal Aviation [Administration] reauthorization. And so that would temporarily extend a lot of the health programs through Nov. 17. The issue is that it’s not something that if they are able to pass that this week, they’d still have to go to the House. And the House has been pretty adamant that they want their own plan and that the CR that they were interested in had a lot more immigration measures, and things there.
And the House right now has been busy attempting to pass this week four of the 12 appropriations bills. And even if they finished the four that they did, that they have on their plate, that would still mean going to the Senate. And Biden has said he would veto those, and it’s still not the 12. So at this point, it is almost impossible for us to not at least see something short-term. But whether or not that’s long-term is I think a question mark in all the folks that I have been talking to about this right now.
Rovner: Yeah, we will know soon enough what’s going to happen. Well, meanwhile, because there’s not enough already going on, covid is back. Well, that depends how you define back. But there’s a lot more covid going around than there was, enough so that the federal government has announced a new round of free tests by mail. And there’s an updated covid vaccine — I think we’re not supposed to call it a booster — but its rollout has been bumpy. And this time it’s not the government’s fault. That’s because this year the vaccine is being distributed and paid for by mostly private insurance. And while lots of people probably won’t bother to get vaccinated this fall, the people who do want the vaccine are having trouble getting it. What’s happening? And how were insurers and providers not ready for this? We’d been hearing the updated vaccines would be available in mid-September for months, Sarah. I mean they really literally weren’t ready.
Karlin-Smith: Yeah. I mean, it’s not really clear why they weren’t ready, other than perhaps they felt they didn’t need to be, to some degree. I mean, normally, I know I was reading actually because we’ve also recently gotten RSV [respiratory syncytial virus] vaccine approvals — normally they actually have almost like a year, I think, to kind of add vaccines to plans and schedules and so forth, and pandemic covid-related laws really shortened the time for covid. So they should have been prepared and ready. They knew this was coming. And people are going to pharmacies, or going to a doctor’s appointment, and they’re being told, “Well, we can give you the vaccine, but your insurance plan isn’t set up to cover it yet, even though technically you should be.” There seems like there’s also been lots of distribution issues where again, people are going to sites where they booked appointments, and they’re saying, “Oh, actually we ran out.” They’re trying another site. They’ve run out.
So, it’s sort of giving people a sense of the difference of what happens when sort of the government shepherds an effort and everybody — things are a bit simplified, because you don’t have to think about which site does your insurance cover. There is a program for people who don’t have insurance now who can get the vaccine for free, but again, you’re more limited in where you can go. There’s not these big free clinics; that’s really impacting childhood vaccinations, because, again, a lot of children can’t get vaccinated at the pharmacy. So I think people are being reminded of what normal looked like pre-covid, and they’re realizing maybe we didn’t like this so much after all.
Rovner: Yeah, it’s not so efficient either. All the people who said, “Oh, the private sector could do this so much more efficiently than the government.” And it’s like, we’re ending up with pretty much the same issues, which is the people who really want the vaccine are chasing around and not finding it. And I know HHS Secretary Becerra went and had this event at a D.C. pharmacy where he was going to get his vaccine. And I think the event was intended to encourage people to go get vaccinated, but it happened right at the time when the big front surge of people who wanted to get vaccinated couldn’t find the vaccine.
Karlin-Smith: I think that’s a big concern because we’ve had such low uptake of booster or additional covid shots over the past couple of years. So the people who are sort of the most go-getters, the ones who really want the shots, are having trouble and feeling a bit defeated. What does that mean for the people that are less motivated to get it, who may not make a second or third attempt if it’s not easy? We sort of know, and I think public health folks kind of beat the drum, that sort of just meeting people where they are, making it easy, easy, easy, is really how you get these things done. So it’s hard to see how we can improve uptake this year when it’s become more complicated, which I think is going to be a big problem moving forward.
Rovner: Yeah. Right. And clearly these are issues that will be ironed out probably in the next couple of weeks. But I think what people are going to remember, who are less motivated to go get their vaccines, is, “Oh my God, these people I know tried to get it and it took them weeks. And they showed up for their appointment and they couldn’t get it.” And it’s like, “It was just too much trouble and I can’t deal with it.” And there’s also, I think you mentioned that there’s an issue with kids who are too young to get the vaccine too, right?
Karlin-Smith: Right. Still, I think people forget that you have to be 6 months to get the vaccine. If you’re under 3, you basically cannot get it in a pharmacy, so you have to get it in a doctor’s office. But a lot of people are reporting online their doctor’s office sort of stopped providing covid vaccines. So they’re having trouble just finding where to go. It seems like the distribution of shots for younger children has also been a bit slower as well. And again, this is a population where just even primary series uptake has been a problem. And people are in this weird gap now where, if you can’t get access to the new covid vaccine but your kid is eligible, the old vaccine isn’t available.
So you’re sort of in this gap where your kid might not have had any opportunity yet to get a covid vaccine, and there’s nothing for them. I think we forget sometimes that there are lots of groups of people that are still very vulnerable to this virus — including newborn babies who haven’t been exposed at all, and haven’t gotten a chance to get vaccinated.
Rovner: Yeah. So this is obviously still something that we need to continue to look at. Well, meanwhile, mask mandates are making a comeback, albeit a very small one. And they are not going over well. I’ve personally been wearing a mask lately because I’m traveling later this week and next, and don’t want to get sick, at least not in advance. But masks are, if anything, even more controversial and political than they were during the height of the pandemic. Does public health have any ideas that could help reverse that trend? Or are there any other things we could do? I’ve seen some plaintiff complaints that we’ve not done enough about ventilation. That could be something where it could help, even if people won’t or don’t want to wear masks. I mean, I’m surprised that vaccination is still pretty much our only defense.
Karlin-Smith: I think with masks, one thing that’s made it hard for different parts of the health system and lower-level kind of state public health departments to deal with masks is that the CDC [Centers for Disease Control and Prevention] recommendations around masking are pretty loose at this point. So The New York Times had a good article about hospitals and masking, and the kind of guidance around triggers they’ve given them are so vague. They kind of are left to make their own decisions. The CDC actually still really hasn’t emphasized the value of KN95 and N95 respirators over surgical masks. So I think it becomes really hard for those lower-level institutions to sort of push for something that is kind of controversial politically. And a lot of people are just tired of it when they don’t have the support of those bigger institutions saying it. And some of just even figuring out levels of the virus and when that should trigger masking.
It’s much harder to track nowadays because so much of our systems and data reporting is off. So, we have this sense we’re in somewhat of a surge now. Hospitalizations are up and so forth. But again, it’s a lot easier for people to make these decisions and figure out when to pull triggers when you have clear data that says, “This is what’s going on now.” And to some extent we’re … again, there’s a lot of evidence that points to a lot of covid going around now, but we don’t have that sort of hard data that makes it a lot easier for people to justify policy choices.
Raman: You just brought up ventilation and it took time, one, for some scientists to realize that covid is also spread through ultra-tiny particles. But it also took, after that, a while for the White House to pivot its strategy to stress ventilation measures in addition to masks, and face covering. So a lot of places are still kind of behind on having better ventilation in an office, or kind of wherever you’re going.
Rovner: Yeah, I mean, one would think that improving ventilation in schools would improve, not only not spreading covid, but not spreading all of the respiratory viruses that keep kids out of school and that make everybody sick during the winter, during the school year.
Roubein: I was going to piggyback on something Sarah said, which was about how the CDC doesn’t have clear benchmarks on when there should be a guideline for what is high transmission in the hospital for them to reinstate a mask mandate or whatever. But there’s also nuance to consider there. Within that there’s, is there a partial masking rule? Which is like: Does the health care staff have to wear them versus the patients? And does that have enough benefit on its own if it’s only required to one versus the other? I mean, I know that a lot of folks have called for more strict rules with that, but then there’s also the folks that are worried about the backlashes. This has gotten so politicized, how many different medical providers have talked about angst at them, attacks at them, over the polarization of covid? So there’s so many things that are intertwined there that it’s tough to institute something.
Karlin-Smith: I think the other thing is we keep forgetting this is not all about covid. We’ve learned a lot of lessons about public health that could be applicable, like you mentioned in schools, beyond covid. So if you’re in the emergency room, because you have cancer and you need to see a doctor right away. And you’re sitting next to somebody with RSV or the flu, it would also be beneficial to have that patient wearing a mask because if you have cancer, you do not need to add one of these infectious diseases on top of it. So it’s just been interesting, I think, for me to watch because it seemed like at different points in this crisis, we were sort of learning things beyond covid for how it could improve our health care system and public health. But for the most part, it seems like we’ve just kind of gone back to the old ways without really thinking about what we could incorporate from this crisis that would be beneficial in the future.
Rovner: I feel like we’ve lost the “public” in public health. That everybody is sort of, it’s every individual for him or herself and the heck with everybody else. Which is exactly the opposite of how public health is supposed to work. But perhaps we will bounce back. Well, moving on. The Biden administration, via the Consumer Financial Protection Bureau, the CFPB, took the first steps last week to ban medical debt from credit scores, which would be a huge step for potentially tens of millions of Americans whose credit scores are currently affected by medical debt. Last year, the three major credit bureaus, Equifax, Experian, and TransUnion, agreed not to include medical debt that had been paid off, or was under $500 on their credit reports. But that still leaves lots and lots of people with depressed scores that make it more expensive for them to buy houses, or rent an apartment, or even in some cases to get a job. This is a really big deal if medical debt is going to be removed from people’s credit reports, isn’t it?
Roubein: Yeah. I think that was an interesting move when they announced that this week. Because the CFPB had mentioned that in a report they did last year, 20% of Americans have said that they had medical debt. And it doesn’t necessarily appear on all credit reports, but like you said, it can. And having that financial stress while going through a health crisis, or someone in your family going through a health crisis, is layers upon layers of difficulty. And they had also said in their report that medical billing data is not an accurate indicator of whether or not you’ll repay that debt compared to other types of credit. And it also has the layers of insurance disputes, and medical billing errors, and all that sort of thing. So this proposal that they have ends up being finalized as a rule, it could be a big deal. Because some states have been trying to do this on a state-by-state level, but still in pretty early stages in terms of a lot of states being on board. So this can be a big thing for a fifth of people.
Rovner: Yeah, many people. I’m going to give a shout-out here to my KFF Health News colleague Noam Levey, who’s done an amazing project on all of this, and I think helped sort of push this along. Well, while we are on the subject of the Biden administration and money in health care, the Federal Trade Commission is suing a private equity-backed doctors group, U.S. Anesthesia Partners, charging anti-competitive behavior, that it’s driving up the price of anesthesia services by consolidating all the big anesthesiology practices in Texas, among other things. FTC Chair Lina Khan said the agency “will continue to scrutinize and challenge serial acquisitions roll-ups and other stealth consolidation schemes that unlawfully undermine fair competition and harm the American public.” This case is also significant because the FTC is suing not just the anesthesia company, but the private equity firm that backs it, Welsh, Carson, Anderson & Stowe, which is one of the big private equity firms in health care. Is this the shot across the bow for private equity and health care that a lot of people have been waiting for? I mean, we’ve been talking about private equity and health care for three or four years now.
Karlin-Smith: I think that’s what the FTC is hoping for. They’re saying not just that we’re going after anti-competitive practices in health care, that, I think, they’re making a clear statement that they’re going after this particular type of funder, which we’ve seen has proliferated around the system. And I think this week there was a report from the government showing that CMS can’t even track all of the private equity ownership of nursing homes. So we know this isn’t the only place where doctors’ practices being bought up by private equity has been seen as potentially problematic. So this has been a very sort of activist, I think, aggressive FTC in health care in general, and in a number of different sectors. So I think they’re ready to deliberate, with their actions and warnings.
Rovner: Yeah, it’s interesting. I mean, we mostly think, those of us who have followed the FTC in healthcare, which gets pretty nerdy right there, usually think of big hospital groups trying to consolidate, or insurers trying to consolidate these huge mega-mergers. But what’s been happening a lot is these private equity companies have come in and bought up physician practices. And therefore they become the only providers of anesthesia, or the only providers of emergency care, or the only providers of kidney dialysis, or the only providers of nursing homes, and therefore they can set the prices. And those are not the level of deals that tend to come before the FTC. So I feel like this is the FTC saying, “See you little people that are doing big things, we’re coming for you too.” Do we think this might dampen private equity’s enthusiasm? Or is this just going to be a long-drawn-out struggle?
Roubein: I could see it being more of a long-drawn-out struggle because even if they’re showing it as an example, there’s just so many ways that this has been done in so many kind of sectors as you’ve seen. So I think it remains to be seen further down the line as this might happen in a few different ways to a few different folks, and how that kind of plays out there. But it might take some time to get to that stage.
Karlin-Smith: I was going to say it’s always worth also thinking about just the size and budget of the FTC in comparison to the amount of private actors like this throughout the health system. So I mean, I think that’s one reason sometimes why they do try and kind of use that grandstanding symbolic messaging, because they can’t go after every bad actor through that formal process. So they have to do the signaling in different ways.
Raman: I think probably as we’ve all learned as health reporters, it takes a really long time for there to be change in the health care system.
Rovner: And I was just going to say, one thing we know about people who are in health care to make money is that they are very creative in finding ways to do it. So whatever the rules are, they’re going to find ways around them and we will just sort of keep playing this cat and mouse for a while. All right, well finally this week, a story that probably should have gotten more attention. The White House last week announced creation of the first-ever Office of Gun Violence Prevention to be headed by Vice President Kamala Harris. Its role will be to help implement the very limited gun regulation passed by Congress in 2022, and to coordinate other administration efforts to curb gun violence. I know that this is mostly for show, but sometimes don’t you really have to elevate an issue like this to get people to pay attention, to point out that maybe you’re trying to do something? Talk about things that have been hard for the government to do over the last couple of decades.
Raman: It took Congress a long time to then pass a new gun package, which the shooting in Uvalde last year ended up catalyzing. And Congress actually got something done, which was more limited than some gun safety advocates wanted. But it does take a lot to get gun safety reform across the finish line.
Rovner: I know. I mean, it’s one of those issues that the public really, really seems to care about, and that the government really, really, really has trouble doing. I’ve been covering this so long, I remember when they first banned gun violence research at HHS back in the mid-1990s. That’s how far back I go, that they were actually doing it. And the gun lobby said, “No, no, no, no, no. We don’t really want these studies that say that if you have a gun in the house, it’s more likely to injure somebody, and not necessarily the bad guy.” They were very unhappy, and it took until three or four years ago for that to be allowed to be funded. So maybe the idea that they’re elevating this somewhat, to at least wave to the public and say, “We’re trying. We’re fighting hard. We’re not getting very far, but we’re definitely trying.” So I guess we will see how that comes out.
All right, well that is this week’s news. Now, we will play my “Bill of the Month” interview with Sam Liss, and then we’ll come back with our extra credits. I am pleased to welcome to the podcast my KFF Health News colleague Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Welcome.
Liss: Hi.
Rovner: This month’s bill involves a patient who died in the hospital, right? Tell them who he was, what he was sick with, and about his family.
Liss: Yeah. So Kent Reynolds died after a lengthy hospital stay in February of 2022. He was actually discharged after complications from colon cancer, and died in his home. And his widow, Eloise Reynolds, was left with a series of complicated hospital bills, and she reached out to us seeking help after she couldn’t figure them out. And her and Kent were married for just shy of 34 years. They lived outside of St. Louis and they have two adult kids.
Rovner: So Eloise Reynolds received what she assumed was the final hospital bill after her husband died, which she paid, right?
Liss: Yeah, she did. She paid what she thought was the final bill for $823, but a year later she received another bill for $1,100. And she was confused as to why she owed it. And no one could really give her a sufficient answer when she reached out to the hospital system, or the insurance company.
Rovner: Can a hospital even send you a bill a year after you’ve already paid them?
Liss: You know what, after looking into this, we learned that yeah, they actually can. There’s not much in the way that stops them from coming after you, demanding more money, months, or even years later.
Rovner: So this was obviously part of a dispute between the insurance company and the hospital. What became of the second bill, the year-later bill?
Liss: Yeah. After Eloise Reynolds took out a yardstick and went line by line through each charge and she couldn’t find a discrepancy or anything that had changed, she reached out to KFF Health News for help. And she was still skeptical about the bill and didn’t want to pay it. And so when we reached out to the health system, they said, “Actually, you know what? This is a clerical error. She does not owe this money.” And it sort of left her even more frustrated, because as she explained to us, she says, “I think a lot of people would’ve ended up paying this additional amount.”
Rovner: So what’s the takeaway here? What do you do if you suddenly get a bill that comes, what seems, out of nowhere?
Liss: The experts we talked to said Eloise did everything right. She was skeptical. She compared, most importantly, the bills that she was getting from the hospital system against the EOBs that she was getting from her insurance company.
Rovner: The explanation of benefits form.
Liss: That’s right. The explanation of benefits. And she was comparing those two against one another, to help guide her on what she should be doing. And because those were different between the two of them, she was left even more confused. I think folks that we spoke to said, “Yeah, she did the right thing by pushing back and demanding some explanations.”
Rovner: So I guess the ultimate lesson here is, if you can’t get satisfaction, you can always write to us.
Liss: Yeah, I hate to say that in a way, because that’s a hard solution to scale for most folks. But yeah, I mean, I think it points to just how confusing our health care system is. Eloise seemed to be a pretty savvy health care consumer, and she even couldn’t figure it out. And she was pretty tenacious in her pursuit of making phone calls to both the insurance company and the hospital system. And I think when she couldn’t figure that out, and she finally turned to us asking for help.
Rovner: So well, another lesson learned. Samantha Liss, thank you very much for joining us.
Liss: Thanks.
Rovner: Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.
OK, we’re back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org, and in our show notes on your phone or other mobile device. Sarah, you were the first to choose this week, so you get to go first.
Karlin-Smith: Sure. I looked at a story in the Los Angeles Times, “California Workers Who Cut Countertops Are Dying of an Incurable Disease,” by Emily Alpert Reyes and Cindy Carcamo. Hopefully I didn’t mispronounce her name. They wrote a really fascinating but sad story about people working in an industry where they’re cutting engineered stone countertops for people’s kitchens and so forth. And because of the materials in this engineered product, they’re inhaling particles that is basically giving people at a very young age incurable and deadly lung disease. And it’s an interesting public health story about sort of the lack of protection in place for some of the most vulnerable workers. It seems like this industry is often comprised of immigrant workers. Some who kind of essentially go to … outside a Home Depot, the story suggests, or something like that and kind of get hired for day labor.
So they just don’t have the kind of power to sort of advocate for protections for themselves. And it’s just also an interesting story to think about, as consumers I think people are not always aware of the costs of the products they’re choosing. And how that then translates back into labor, and the health of the people producing it. So, really fascinating, sad piece.
Rovner: Another product that you have to sort of … I remember when they first were having the stories about the dust in microwave popcorn injuring people. Sandhya, why don’t you go next?
Raman: So my extra credit this week is from NPR and it’s by Meg Anderson. And it’s called “1 in 4 Inmate Deaths Happen in the Same Federal Prison. Why?” This is really interesting. It’s an investigation that looks at the deaths of individuals who died either while serving in federal prison or right after. And they looked at some of the Bureau of Prisons data, and it showed that 4,950 people had died in custody over the past decade. But more than a quarter of them were all in one correctional facility in Butner, North Carolina. And the investigation found out that the patients here and nationwide are dying at a higher rate, and the incarcerated folks are not getting care for serious illnesses — or very delayed care, until it’s too late. And the Butner facility has a medical center, but a lot of times the inmates are being transferred there when it was already too late. And then it’s really sad the number of deaths is just increasing. And just, what can be done to alleviate them?
Rovner: It was a really interesting story. Rachel.
Roubein: My extra credit, the headline is “A Decades-Long Drop in Teen Births Is Slowing, and Advocates Worry a Reversal Is Coming,” by Catherine Sweeney from WPLN, in partnership with KFF Health News. And she writes about the national teen birth rate and how it’s declined dramatically over the past three decades. And that, essentially, it’s still dropping, but preliminary data released in June from the CDC shows that that descent may be slowing. And Catherine had talked to doctors and other service providers and advocates, who essentially expressed concern that the full CDC dataset release later this year can show a rise in teen births, particularly in Southern states. And she talked to experts who pointed to several factors here, including the Supreme Court’s decision to overturn Roe v. Wade, intensifying political pushback against sex education programs, and the impact of the pandemic on youth mental health.
Rovner: Yeah. There’ve been so many stories about the decline in teen birth, which seemed mostly attributable to them being able to get contraception. To get teens not to have sex was less successful than getting teens to have safer sex. So we’ll see if that tide is turning. Well, I’m still on the subject of health costs this week. My story is a study from JAMA Internal Medicine that was conducted in part by Shark Tank panelist Mark Cuban, for whom health price transparency has become something of a crusade. This study is of a representative sample of 60 hospitals of different types conducted by researchers from the University of Texas. And it assessed whether the online prices posted for two common procedures, vaginal childbirth and a brain MRI, were the same as the prices given when a consumer called to ask what the price would be. And surprise. Mostly they were not. And often the differences were very large. In fact, to quote from the study, “For vaginal childbirth, there were five hospitals with online prices that were greater than $20,000, but telephone prices of less than $10,000. The survey was done in the summer of 2022, which was a year and a half after hospitals were required to post their prices online.” At some point, you have to wonder if anything is going to work to help patients sort out the prices that they are being charged for their health care. Really eye-opening study.
All right, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our amazing engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me at X, @jrovner. Sarah.
Karlin-Smith: I’m @SarahKarlin, or @sarahkarlin-smith.
Rovner: Sandhya.
Raman: @SandhyaWrites
Rovner: Rachel.
Roubein: @rachel_roubein
Rovner: We will be back in your feed next week. Until then, be healthy.
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KFF Health News' 'What the Health?': Countdown to Shutdown
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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.
Health and other federal programs are at risk of shutting down, at least temporarily, as Congress races toward the Oct. 1 start of the fiscal year without having passed any of its 12 annual appropriations bills. A small band of conservative House Republicans are refusing to approve spending bills unless domestic spending is cut beyond levels agreed to in May.
Meanwhile, former President Donald Trump roils the GOP presidential primary field by vowing to please both sides in the divisive abortion debate.
This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat News, and Tami Luhby of CNN.
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Alice Miranda Ollstein
Politico
Rachel Cohrs
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Tami Luhby
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Among the takeaways from this week’s episode:
- The odds of a government shutdown over spending levels are rising. While entitlement programs like Medicare would be largely spared, past shutdowns have shown that closing the federal government hobbles things Americans rely on, like food safety inspections and air travel.
- In Congress, the discord isn’t limited to spending bills. A House bill to increase price transparency in health care melted down before a vote this week, demonstrating again how hard it is to take on the hospital industry. Legislation on how pharmacy benefit managers operate is also in disarray, though its projected government savings means it could resurface as part of a spending deal before the end of the year.
- On the Senate side, legislation intended to strengthen primary care is teetering under Bernie Sanders’ stewardship — in large part over questions about how to pay for it. Also, this week Democrats broke Alabama Republican Sen. Tommy Tuberville’s abortion-related blockade of military promotions (kind of), going around him procedurally to confirm the new chair of the Joint Chiefs of Staff.
- And some Republicans are breaking with abortion opponents and mobilizing in support of legislation to renew the United States President’s Emergency Plan for AIDS Relief — including the former president who spearheaded the program, George W. Bush. Meanwhile, polling shows President Joe Biden is struggling to claim credit for the new Medicare drug negotiation program.
- And speaking of past presidents, former President Donald Trump gave NBC an interview over the weekend in which he offered a muddled stance on abortion. Vowing to settle the long, inflamed debate over the procedure — among other things — Trump’s comments were strikingly general election-focused for someone who has yet to win his party’s nomination.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: The Washington Post’s “Inside the Gold Rush to Sell Cheaper Imitations of Ozempic,” by Daniel Gilbert.
Alice Miranda Ollstein: Politico’s “The Anti-Vaccine Movement Is on the Rise. The White House Is at a Loss Over What to Do About It,” by Adam Cancryn.
Rachel Cohrs: KFF Health News’ “Save Billions or Stick With Humira? Drug Brokers Steer Americans to the Costly Choice,” by Arthur Allen.
Tami Luhby: CNN’s “Supply and Insurance Issues Snarl Fall Covid-19 Vaccine Campaign for Some,” by Brenda Goodman.
Also mentioned in this week’s episode:
- The AP’s “Biden’s Medicare Price Negotiation Is Broadly Popular. But He’s Not Getting Much Credit,” by Seung Min Kim and Linley Sanders.
- Roll Call’s “Sanders, Marshall Reach Deal on Health Programs, but Challenges Remain,” by Jessie Hellmann and Lauren Clason.
CLICK TO EXPAND THE TRANSCRIPT
Transcript: Countdown to Shutdown
[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]
Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Sept. 21, at 9 a.m. because, well, lots of news this week. And as always, news happens fast, and things might well 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: Good morning.
Rovner: Rachel Cohrs of Stat News.
Rachel Cohrs: Hi, everybody.
Rovner: And Alice Miranda Ollstein of Politico.
Alice Miranda Ollstein: Hello.
Rovner: Let’s get to some of that news. We will begin on Capitol Hill, where I might make a T-shirt from this tweet from Wednesday from longtime congressional reporter Jake Sherman: “I feel like this is not the orderly appropriations process that was promised after the debt ceiling deal passed.” For those of you who might’ve forgotten, many moons ago, actually it was May, Congress managed to avoid defaulting on the national debt, and as part of that debt ceiling deal agreed to a small reduction in annual domestic spending for the fiscal year that starts Oct. 1 (as in nine days from now). But some of the more conservative Republicans in the House want those cuts to go deeper, much deeper, in fact. And now they’re refusing to either vote for spending bills approved by the Republican-led appropriations committee or even for a short-term spending bill that would keep the government open after this year’s funding runs out. So how likely is a shutdown at this point? I would hazard a guess to say pretty likely. And anybody disagree with that?
Ollstein: It’s more likely than it was a week or two ago, for sure. The fact that we’re at the point where the House passing something that they know is dead on arrival in the Senate would be considered a victory for them. And so, if that’s the case, you really have to wonder what the end game is.
Rovner: Yeah, I mean it was notable, I think, that the House couldn’t even pass the rule for the Defense Appropriations Bill, which is the most Republican-backed spending bill, and the House couldn’t get that done. So I mean it does not bode well for the fate of some of these domestic programs that Republicans would, as I say, like to cut a lot deeper. Right?
Cohrs: Democrats are happy, I think, to watch Republicans flail for a while. I think we saw this during the speaker votes. Obviously, a CR [continuing resolution] could pass with wide bipartisan support, but I think there’s a political interest for Democrats going into an election year next year to lean into the idea of the House Republican chaos and blaming them for a shutdown. So I wouldn’t be too optimistic about Democrats billing them out anytime soon.
Rovner: But, bottom line, of course, is that a shutdown is not great for Democrats who support things that the government does. I mean, Tami, you’re watching, what does happen if there’s a shutdown? Not everything shuts down and not all the money stops flowing.
Luhby: No, and the important thing, unlike in the debt ceiling, potentially, was that Social Security will continue, Medicare will continue, but it’ll be very bothersome to a lot of people. There’ll be important things that … potentially chaos at airlines and food safety inspectors. I mean some of them are sometimes considered essential workers, but there’s still issues there. So people will be mad because they can’t go to their national parks potentially. I mean it’s different every time, so it’s a little hard to say exactly what the effects will be and we’ll see also whether this will be a full government shutdown, which will be much more serious than a partial government shutdown, although at this point it doesn’t look like they’re going to get any of the appropriation bills through.
Rovner: I was going to say, yeah, sometimes when they get some of the spending bills done, there’s a partial shutdown because they’ve gotten some of the spending bills done, but I’m pretty sure they’ve gotten zero done now. I think there’s one that managed to pass both the House and the Senate, but basically this would be a full shutdown of everything that’s funded through the appropriations process. Which as Tami points out, the big things are the Smithsonian and the National Zoo close, and national parks close, but also you can’t get an awful lot of government services. Meanwhile, the ill will among House Republicans is apparently rubbing off on other legislation. The House earlier this week was supposed to vote on a relatively noncontroversial package of bills aimed at making hospital insurance and drug prices more transparent, among other things. But even that couldn’t get through. Rachel, what happened to the transparency bill that everybody thought was going to be a slam-dunk?
Cohrs: Well, I don’t think everybody thought it was going to be a slam-dunk given the chaos that we saw, especially in the Democratic Caucus last week, where one out of three chairmen who work on health care in the House endorsed the package, but the other two would not. And they ran into a situation where, with the special rule that they were using to consider the House transparency package, they needed two-thirds vote to pass and they couldn’t get enough Democrats on board to pass it. And I think there were some process concerns from both sides that there was a compromise that came out right after August recess and it hadn’t been socialized properly and they didn’t have their ducks in a row in the Democratic side. But ultimately, I mean, the big picture for me I think was how hard it really is to take on the hospital industry. Because this was the first real effort I think from the House and it melted down before its first vote. That doesn’t mean it’s dead yet, but it was an embarrassment, I think, to everyone who worked on this that they couldn’t get this pretty noncontroversial package through. And when I tried to talk to people about what they actually oppose, it was these tiny little details about a privacy provision or one transparency provision and not with the big idea. It wasn’t ideological necessarily. So I think it was just a reflection on Congress has taken on pharma, they’re working on PBMs this year, but if they really do want to tackle hospital costs, which are a very big part of Medicare spending, it’s going to be a tough road ahead for them.
Rovner: As we like to point out, every single member of Congress has a hospital in their district, and they are quick to let their members of Congress know what they want and how they want them to vote on things. Before we move on, where are we on the PBM legislation? I know there was a whole raft of hearings this week on doing something about PBMs. And my inbox is full of people from both sides. “The PBMs are making drug prices higher.” “No, the PBMs are helping keep drug prices in check.” Where are we with the congressional effort to try and at least figure out what the PBMs do?
Cohrs: Yeah, I think there is still some disarray at this point. I would watch for action in December or whenever we actually have a conversation about government funding because some of these PBM bills do save money, which is the golden ticket in health care because there are a lot of programs that need to be paid for this year. So Congress will continue to debate those over the next couple of weeks, but I think everyone that I talk to is expecting potential passage in a larger package at the end of the year.
Rovner: So speaking of things that need to be paid for, the saga of Sen. Bernie Sanders and the reauthorization of some key primary care programs, including the popular community health center program, continues. When we left off last July, Sen. Sanders, who chairs the Senate Health, Education, Labor & Pensions Committee [HELP], tried to advance a bill to extend and greatly expand primary care programs without negotiating with his ranking Republican on the committee, Louisiana Sen. Bill Cassidy, who had his own bill to renew the programs. Cassidy protested and blocked the bill’s movement and the whole enterprise came to a screeching halt. Last week, Sanders announced he’d negotiated a bipartisan bill, but not with Cassidy, rather with Kansas Republican Roger Marshall, who chairs the relevant subcommittee. Cassidy, however, is still not pleased. Rachel, you’re following this. Sanders has scheduled a markup of the bill for later today. Is it really going to happen?
Cohrs: Well, I think things are on track and the thing to remember about a markup is it passes on a majority. So as long as Sen. Sanders can keep his Democratic members in line and gets Sen. Marshall, then it can pass committee. But I think there are some concerns that other Republicans will share with Sen. Cassidy about how the bill is paid for. There are a lot of ambitious programs to expand workforce training, have debt forgiveness, and address the primary care workforce crisis in a more meaningful way. But the list of pay-fors is a little undisciplined from what I’ve seen, I would say.
Rovner: That’s a good word.
Cohrs: Sen. Sanders is pulling some pay-fors from other committees, which he can’t necessarily do by himself, and they don’t actually have estimates from the Congressional Budget Office for some of the pay-fors that they’re planning to use. They’re just using internal committee math, which I don’t think is going to pass muster with Republicans in the full Senate, even if it gets through committee today. So I think we’ll see some of those concerns flare up. It could get ugly today compared with HELP markups of the past of community health center bills. And there are certainly some concerns about the application of the Hyde Amendment too, and how it would apply to some of this funding as it moves through the appropriations process.
Rovner: That’s the amendment that bans direct government funding of abortion, and there’s always a fight about the Hyde Amendment, which are reauthorizing these health programs. But I mean, we should point out, I mean this is one of the most bipartisanly popular programs, both the community health center program and these programs that basically give federal money to train more primary care doctors, which the country desperately needs. I mean, it’s something that pretty much everybody, or most of Congress, supports, but Cassidy has what, 60 amendments to this bill. I guess he’s really not happy. Cassidy who supports this in general just is unhappy with this process, right?
Cohrs: I think his concern is more that the legislation is half-baked, not that he’s against the idea of it. And Sen. Cassidy did sign on to a more limited House proposal as well, just saying, we need to fund the community health centers, we need to do something. This isn’t ready for prime time. We could see further negotiations, but the time is ticking for this funding to expire.
Rovner: Well, another program whose authorization expires at the end of the month is PEPFAR, the international AIDS/HIV program. It’s being blocked by anti-abortion activists among others, even though it doesn’t have anything to do with the abortion. And this is not just a bipartisan program, it’s a Republican-led program. Former President George W. Bush who signed it into law in 2003, had an op-ed this week pushing for the program in The Washington Post. Alice, you’ve been following this one. Is there any progress on PEPFAR?
Ollstein: Yes and no. There’s not a vote scheduled, there’s not a “Kumbaya” moment, but we are seeing some movement. I call it “Establishment Republican Strike Back.” You have some both on- and off-the-Hill Republicans really mobilizing to say, “Look, we need to reauthorize this program. This is ridiculous.” And they’re going against the anti-abortion groups and their allies on Capitol Hill who say, “No, let’s just extend this program just year by year through appropriations, not a reauthorization.” Which they say would rubber-stamp the Biden administration redirecting money towards abortion, which the Biden administration and everybody else denies is happening. And so we confirmed that Chairman Mike McCaul in the House and Lindsey Graham in the Senate are working with Democrats on some sort of reauthorization bill. It might not be the full five years, it might be three years, we don’t really know yet. But they think that at least a multiyear reauthorization will give the program some stability rather than the one-year funding patch that other House Republicans are mulling. So we’re going to see where this goes; obviously, it’s an interesting test for the influence of these anti-abortion groups on Capitol Hill. And my colleague and I also scooped that former President Bush, who oversaw the creation of this program, is quietly lobbying certain members, having meetings, and so we will see what kind of pull he still has in the party.
Rovner: Well, this was one of his signature achievements, literally. So it’s something that I know that … and we should point out, unlike the spending bills, the appropriation bills, if this doesn’t happen by Oct. 1, nothing stops, it’s just it becomes theoretically unauthorized, like many programs are, and it’s considered not a good sign for the program.
Luhby: One thing I also wanted to just bring up quickly, tangentially related to health care, but also showing how bipartisan programs are not getting the support that they did, is the WIC program, which is food assistance for women, infants and children, needs more money. Actually participation is up, but even before that, the House Republicans wanted to cut the funding for it, and that was going to be a big divide between them and the Senate. And now because participation is up, the Biden administration is actually asking for another $1.4 billion for the program. This is a program that, again, has always had support and has been fully funded, not had to turn people away. And now it’s looking that many women and small children may not be able to get the assistance if Congress isn’t able to actually fund the program fully.
Rovner: Yes, they’re definitely tied in knots. Well, Oct. 1 turns out to be a key date for a lot of health care issues. It’s also the day drugmakers are supposed to notify Medicare whether they will participate in negotiations for the 10 high-cost drugs Medicare has chosen for the first phase of the program that Congress approved last year. But that might all get blocked if a federal judge rules in favor of a suit brought by the U.S. Chamber of Commerce, among others. Rachel, there was a hearing on this last week, where does this lawsuit stand and when do we expect to hear something from the judge?
Cohrs: So the judge didn’t ask any questions of the attorneys, so they were essentially presenting arguments that we’ve already seen previewed in some of the briefing materials. We are expecting some action by Oct. 1, which is when the Chamber had requested a ruling on whether there’s going to be a preliminary injunction, just because drugmakers are supposed to sign paperwork and submit data to CMS by that Oct. 1 date. So I think we are just waiting to see what the ruling might be. Some of the key issues or whether the Chamber actually has standing to file this lawsuit, given it’s not an actual drug manufacturer. And there was some quibbling about what members they listed in the lawsuit. And then I think they only addressed the argument that the negotiation program violated drugmakers’ due process rights, which isn’t the full scope of the lawsuit. It’s not an indicator of success really anywhere else, but it is important because it is the very first test. And if a preliminary injunction is issued, then it brings everything to a halt. So I think it would be very impactful for other drugmakers as well.
Rovner: Nobody told me when I became a health reporter that I was going to have to learn every step of the civil judicial process, and yet here we are. Well, while we are still on the subject of drug prices, a new poll from the AP and the NORC finds that while the public, Republicans and Democrats, still strongly support Medicare being able to negotiate the price of prescription drugs, President [Joe] Biden is getting barely any credit for having accomplished something that Democrats have been pushing for for more than 20 years. Most respondents in the survey either don’t think the plan goes far enough, because, as we point out, it’s only the first 10 drugs, or they don’t realize that he’s the one that helped push it over the finish line. This should have been a huge win and it’s turning out to be a nothing. Is that going to change?
Ollstein: It’s kind of a “Groundhog Day” of the Obamacare experience in which they pass this big, huge reform that people had been fighting for so long, but they’re trying to campaign on it when people aren’t really feeling the effects of it yet. And so when people aren’t really feeling the benefit and they’re hearing, “Oh, we’re lowering your drug prices.” But they’re going to the pharmacy and they’re paying the same very high amount, it’s hard to get a political win from that. The long implementation timeline is against them there. So there are some provisions that kick in more quickly, so we’ll have to see if that makes any kind of difference. I think that’s why you hear them talk a lot about the insulin price cap because that is already in effect, but that hits fewer people than the bigger negotiation will theoretically hit eventually. So it’s tough, and I think it leaves a vacuum where the drug industry and conservatives can fearmonger or raise concerns and say, “This will make drugs inaccessible and they won’t submit new cures for approval.” And all this stuff. And because people aren’t feeling the benefits, but they’re hearing those downsides, yeah, that makes the landscape even tougher for Democrats.
Luhby: This is very much the pattern that the Biden administration has had with a lot of its achievements or successes because it’s also not getting any credit for anything in the economy. The job market is relatively strong still, the economy is relatively strong. Yes, we have high inflation and high prices, even though that’s moderated, prices are still high, and that’s what people are seeing. Gas prices are now up again, which is not good for the administration. But they’re touting their Bidenomics, which also includes lowering drug prices. But generally polling shows, including our CNN polling shows, that people do not think the economy is doing well and they’re not giving Biden any credit for anything.
Cohrs: I think part of the problem is that … it’s different from the Affordable Care Act where it was health care, health care, health care for a very long time. This is lumped into a bill called the Inflation Reduction Act. I think it got lumped in with climate, got looped in with tax. And the media, we did our best, but it was hard to explain everything that was in the bill. And Medicare negotiation is complicated, it’s wonky, and I don’t know that people fully understood everything that was in the Inflation Reduction Act when it passed and they capitulated to Sen. [Joe] Manchin for what he wanted to name it. And so I think some of that got muddled when it first passed and they’re kind of trying to do catch-up work to explain, again, like Alice said, something that hasn’t gone into effect, which is a really tough uphill climb.
Rovner: This has been a continuing frustration for Democrats, which is that actually getting legislation done in Washington always involves some kind of compromise, and it’s always going to be incremental. And the public doesn’t really respond to things that are incremental. It’s like, “Why isn’t it bigger? Why didn’t they do what they promised?” And so the Republicans get more credit for stopping things than the Democrats get for actually passing things. Right. Well, let us turn to abortion. The breaking news today is that the Senate is finally acting to bust the blockade Alabama Republican Sen. Tommy Tuberville has had on military promotion since February to protest a Defense Department policy allowing service people leave to travel to other states for abortions. And Tuberville himself is part of this breakage, right, Alice? And it’s not a full breakage.
Ollstein: Right. And there have also been some interesting interviews that maybe raise questions on how much Tuberville understands the mechanics of what he’s doing because he said in an interview, “Oh, well, the people who were in these jobs before, they’ll just stay in it and it’s fine.” And they had to explain, “Well, statutorily, they can’t after a certain date.” And he seemed surprised by that. And now you’re seeing these attempts to go around his own blockade, and Democrats to go around his blockade. In part, for a while, Democrats were really not wanting to do that, schedule these votes, until he fully relented because they thought that would increase the pressure.
Rovner: They didn’t want to do it nomination by nomination for the big-picture ones because they were afraid that would leave behind the smaller ones.
Ollstein: Exactly. But this is dragging on so long that I think you’re seeing some frustration and desire to do something, even if it’s not fully resolving the standoff.
Rovner: And I’m seeing frustration from other Republicans. Again, the idea of a Republican holding up military promotions for six months is something that was not on my Republican Bingo card five years ago or even two years ago. I’m sure he’s not making a lot of his colleagues very happy with this. So on the Republican presidential campaign trail, abortion continues to be a subject all the candidates are struggling with — all of them, it seems, except former President Donald Trump, who said in an interview with NBC on Sunday that he alone can solve this. Francis, you have the tape.
Donald Trump: We are going to agree to a number of weeks or months or however you want to define it, and both sides are going to come together, and both sides, and this is a big statement, both sides will come together and for the first time in 52 years, you’ll have an issue that we can put behind us.
Rovner: OK. Well, Trump — who actually seemed all over the place about where he is on the issue in a fairly bald attempt to both placate anti-abortion hardliners in the party’s base and those who support abortion rights, whose votes he might need if he wants to win another election — criticized his fellow Republicans, who he called, “inarticulate on the subject.” I imagine that’s not going over very well among all of the other Republican candidates, right?
Ollstein: We have a piece up on this this morning. One, Trump is clearly acting like he has already won the primary, so he is trying to speak to a general audience, as you noted, and go after those votes in the middle that he may need and so he’s pitching this compromise. And we have a piece that the anti-abortion groups are furious about this, but they don’t really know what to do about it because he probably is going to be the nominee and they’re probably going to spend tens of millions to help elect him if he is, even though they’re furious with these comments he’s making. And so it’s a really interesting moment for their influence. Of course, Trump is trying to have it both ways, he also is calling himself the most pro-life president of all time. He is continually taking credit for appointing the justices to the Supreme Court who overturned Roe v. Wade.
Rovner: Which he did.
Ollstein: Exactly.
Rovner: Which is true.
Ollstein: Which he definitely did. But he is not toeing the line anymore that these groups want. These groups want him to endorse some sort of federal ban on abortion and they want him to praise states like Florida that have passed even stricter bans. He is not doing that. And so there’s an interesting dynamic there. And now his primary opponents see this as an opening, they’re trailing him in the polls, and so they’re trying to capitalize on this. [Gov. Ron] DeSantis and a bunch of others came out blasting him for these abortion remarks. But again, he’s acting like he’s already won the primary, he’s brushing it off and ignoring them.
Rovner: I love how confident he is though, that there’s a way to settle this — really, that there is a compromise, it’s just nobody’s been smart enough to get to it.
Ollstein: Well, he also, in the same interview, he said he’ll solve the Ukraine-Russia war in a day. So I mean, I think we should consider it in that context. It was interesting when I talked to all these different anti-abortion groups, they all said the idea of cutting some sort of deal is ludicrous. There is no magic deal that everybody would be happy about. If anything …
Rovner: And those on the other side will say the same thing.
Ollstein: Exactly. How could you watch what’s happened over the past year or 30 years and think that’s remotely possible? However, they did acknowledge that him saying that does appeal to a certain kind of voter, who is like, “Yeah, let’s just compromise. Let’s just get past this. I’m sick of all the fighting.” So it’s another interesting tension.
Rovner: Yeah. And I love how Trump always says the quiet part out loud, which is that this is not a great issue for Republicans and they’re not talking about it right. It’s like Republicans know this is a not-great issue for Republicans, but they don’t usually say that in an interview on national television. That is Trump, and this will continue. Well, finally this week I wanted to talk about what I am calling the dark underbelly of the new weight loss drugs. This is my extra credit this week. It’s a Washington Post story by Daniel Gilbert called “Inside the Gold Rush to Sell Cheaper Imitations of Ozempic.” It’s about the huge swell of sometimes not-so-legitimate websites and wellness spas selling unapproved formulations of semaglutide and tirzepatide — better known by their brand names Ozempic, Wegovy, and Mounjaro — to unsuspecting consumers because the demand for these diabetes drugs is so high for people who want to lose weight. The FDA has declared semaglutide at least to be in shortage for the people it was originally approved for, those with Type 2 diabetes. But that designation legally allows compounding pharmacies to manufacture their own versions, at least in some cases, except to quote the piece, “Since then, a parallel marketplace with no modern precedent has sprung up attracting both licensed medical professionals and entrepreneurs with histories ranging from regulatory violations to armed robbery.” Meanwhile, and this is coming from a separate story, both Eli Lilly and Novo Nordisk, the manufacturers of the approved versions of the drugs, are suing companies they say are selling unapproved versions of their drug, including, in some cases, drugs that actually pretend to be the brand name drug that aren’t. This is becoming really a big messy buyer-beware market, right? Rachel, you guys have written about this.
Cohrs: It has. Yeah, my colleagues have done great coverage, including I think the lawsuit by manufacturers of these drugs who are seeing their profits slipping through their fingers as patients are turning to these alternatives that aren’t necessarily approved by the FDA. And I think there are also risks because we have seen some side effects from these medications; they range from some very serious GI symptoms to strange dreams. There’s just a whole lot going on there. And I think it is concerning that some patients are getting ahold of these medications, which are expensive if you’re buying them the traditional way. And again, for weight loss, I think some of these medications are still off-label, they’re not FDA-approved. So if they’re getting these without any supervision from a medical provider or somebody who they can ask when they have questions that come up and are monitoring for some of these other side effects, then I think it is a very dangerous game for these patients. And I think it’s just a symptom of this outpouring of interest and the regulators’, I think, failure to keep up with it. And there’s also some supply concerns. So I think it’s just this perfect storm of desperation from patients and the bureaucracy struggling to keep up.
Rovner: Yeah. One of the reasons I chose the story is I really feel like this is unprecedented. I mean, I suppose it could have been predicted because these drugs do seem to be very good at what they do and they are very expensive and very hard to get, so not such a surprise that not-so-honest people might spring up to try and fill the void. But it’s still a little bit scary to see people selling heaven only knows what to people who are very anxious to take things.
Luhby: And in related news, there are more doctors who are interested in obesity medicine now, so everyone is trying to cash in.
Rovner: Yeah, I mean, eventually I imagine this will sort itself out. It’s just that at the beginning when it’s so popular, although I will still … I keep thinking this, is the solution to really throw this much money at it or to try to figure out how to make these drugs cheaper? If it’s going to be such a societal good, maybe we should do something about the price. Anyway, that is my extra credit in this week’s news. Now we will take a quick break and then we’ll come back with the rest of our extra credits.
Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.
OK, we are back and it’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it; we will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Tami, why don’t you go first this week?
Luhby: Sure. Well, this week I chose a good story by one of my colleagues, Brenda Goodman. It’s titled “Supply and Insurance Issues Snarl Fall Covid-19 Vaccine Campaign for Some.” And we’ve all been hearing this, I heard this from a friend of mine who’s a doctor, we know Cynthia Cox at KFF tweeted about this. And that even though the new vaccines are ready and the Biden administration has been pushing people to go get them, and many people are eager to get them, they’re not so easy to get. Either because drugstores are running out, that’s what happened to my friend. She went in and said there just wasn’t any supply available. Or for some other people, they’re supposed to be free for most Americans, but the insurance companies haven’t caught up with that yet. So they go in and either they’re denied or the pharmacy tells them that they have to pay potentially $200 for the vaccines. So the problem here is that there’s already an issue with getting vaccines and people getting vaccinated in this country and then putting up extra hurdles for them will only cause more problems and cause fewer people to get vaccinated because some people may not come back.
Rovner: Talk about something that should have been predictable. The distributors knew it was going to be available and pretty much when, and the insurance companies knew it was going to be available and pretty much when, and yet somehow they seem to have not gotten their act together when the predictable surge of people wanting to get the vaccine early came about. Alice, you wanted to add something?
Ollstein: Just anecdotally, the supply and the demand are completely out of whack. My partner is back home in Alabama right now and he was at a pharmacy where they were just wandering around asking random people, “Will you take the shot? Will you take the shot?” And a bunch of people were saying, “No.” And meanwhile, here in D.C., myself and everyone I know is just calling around wanting to get it and not able to. And so you think we’d have figured this out better after so many years of this.
Rovner: Well, I have an appointment for tomorrow. We’ll see if it happens. Rachel, why don’t you go next?
Cohrs: Sure. I chose a KFF Health News story by Arthur Allen, and the headline is “Save Billions or Stick With Humira? Drug Brokers Steer Americans to the Costly Choice.” And I just love a story where it’s off the news cycle a little bit and we see this big splashy announcement. And I think Arthur did a great job of following up here and seeing what actually was happening with formulary placement for Humira and the new biosimilars that just came on the market.
Rovner: Yep. Remind us what Humira is?
Cohrs: Oh, yeah. So it’s one of the most profitable drugs ever. The company that makes it, AbbVie, had created this big patent thicket to try to prevent it from competition for a very long time, but this year saw competition that had been on the market in Europe finally come online in the U.S. So again, a big change for AbbVie, for the market. But I think there was concern about whether people would actually switch to these new medications that have lower prices. But again, as it gets caught up and spit out of our drug supply chain, there are a whole lot of incentives that don’t necessarily result in the cheaper medication being prescribed. And Arthur found that Express Scripts and Optum, which are two of the three biggest pharmacy benefit managers, have the biosimilar versions of Humira at the same price as Humira. So that doesn’t really create a lot of incentive for people to switch. So I think it was just great follow-up reporting and we don’t really have a lot of visibility into these formularies sometimes. So I think it was a illuminating piece.
Rovner: Yeah. And the mess that is drug pricing. Alice.
Ollstein: So I also chose a great piece by my colleague Adam Cancryn and it’s called “The Anti-Vaccine Movement Is on the Rise. The White House Is at a Loss Over What to Do About It.” It’s part of a series we’re doing on anti-vax sentiment and its impacts. And this is just going into how the Biden administration really doesn’t have a plan for combating this, even as it’s posing a bigger and bigger public health threat. And some of their attempts to go after misinformation online were stymied in court and they also are struggling with not wanting to elevate it by debunking it — that that age-old tension of, is it better to just ignore it or is it better to combat it directly? A lot of this is also tying into RFK Jr.’s presidential bid and how much to acknowledge that or not. But the impact is that they’re not really taking this on, even as it’s getting worse and worse in the country.
Rovner: And I got a bunch of emails this week about the anti-vax movement spreading to pets — that people are now resisting getting their dogs and cats vaccinated. Seriously. I mean, it is a serious problem. Obviously, if people stop getting rabies vaccines, that could be a big deal. So something else to watch. All right. Well, I already did my extra credit. So that is it for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our indefatigable engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me; I’m still @jrovner on X and on Bluesky. Tami?
Luhby: You can tweet me at @Luhby. I sometimes check it still.
Rovner: Rachel.
Cohrs: I’m on X @rachelcohrs.
Rovner: Alice.
Ollstein: I’m @AliceOllstein.
Rovner: We will be back in your feed next week. Until then, be healthy.
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2 years 1 month ago
Elections, Health Care Costs, Health Industry, Medicaid, Medicare, Multimedia, Pharmaceuticals, Public Health, Abortion, Biden Administration, Drug Costs, HIV/AIDS, KFF Health News' 'What The Health?', Podcasts, U.S. Congress, Women's Health
Save Billions or Stick With Humira? Drug Brokers Steer Americans to the Costly Choice
Tennessee last year spent $48 million on a single drug, Humira — about $62,000 for each of the 775 patients who were covered by its employee health insurance program and receiving the treatment. So when nine Humira knockoffs, known as biosimilars, hit the market for as little as $995 a month, the opportunity for savings appeared ample and immediate.
But it isn’t here yet. Makers of biosimilars must still work within a health care system in which basic economics rarely seems to hold sway.
For real competition to take hold, the big pharmacy benefit managers, or PBMs, the companies that negotiate prices and set the prescription drug menu for 80% of insured patients in the United States, would have to position the new drugs favorably in health plans.
They haven’t, though the logic for doing so seems plain.
Humira has enjoyed high-priced U.S. exclusivity for 20 years. Its challengers could save the health care system $9 billion and herald savings from the whole class of drugs called biosimilars — a windfall akin to the hundreds of billions saved each year through the purchase of generic drugs.
The biosimilars work the same way as Humira, an injectable treatment for rheumatoid arthritis and other autoimmune diseases. And countries such as the United Kingdom, Denmark, and Poland have moved more than 90% of their Humira patients to the rival drugs since they launched in Europe in 2018. Kaiser Permanente, which oversees medical care for 12 million people in eight U.S. states, switched most of its patients to a biosimilar in February and expects to save $300 million this year alone.
Biologics — both the brand-name drugs and their imitators, or biosimilars — are made with living cells, such as yeast or bacteria. With dozens of biologics nearing the end of their patent protection in the next two decades, biosimilars could generate much higher savings than generics, said Paul Holmes, a partner at Williams Barber Morel who works with self-insured health plans. That’s because biologics are much more expensive than pills and other formulations made through simpler chemical processes.
For example, after the first generics for the blockbuster anti-reflux drug Nexium hit the market in 2015, they cost around $10 a month, compared with Nexium’s $100 price tag. Coherus BioSciences launched its Humira biosimilar, Yusimry, in July at $995 per two-syringe carton, compared with Humira’s $6,600 list price for a nearly identical product.
“The percentage savings might be similar, but the total dollar savings are much bigger,” Holmes said, “as long as the plan sponsors, the employers, realize the opportunity.”
That’s a big if.
While a manufacturer may need to spend a few million dollars to get a generic pill ready to market, makers of biosimilars say their development can require up to eight years and $200 million. The business won’t work unless they gain significant market share, they say.
The biggest hitch seems to be the PBMs. Express Scripts and Optum Rx, two of the three giant PBMs, have put biosimilars on their formularies, but at the same price as Humira. That gives doctors and patients little incentive to switch. So Humira remains dominant for now.
“We’re not seeing a lot of takeup of the biosimilar,” said Keith Athow, pharmacy director for Tennessee’s group insurance program, which covers 292,000 state and local employees and their dependents.
The ongoing saga of Humira — its peculiar appeal to drug middlemen and insurers, the patients who’ve benefited, the patients who’ve suffered as its list price jumped sixfold since 2003 — exemplifies the convoluted U.S. health care system, whose prescription drug coverage can be spotty and expenditures far more unequal than in other advanced economies.
Biologics like Humira occupy a growing share of U.S. health care spending, with their costs increasing 12.5% annually over the past five years. The drugs are increasingly important in treating cancers and autoimmune diseases, such as rheumatoid arthritis and inflammatory bowel disease, that afflict about 1 in 10 Americans.
Humira’s $200 billion in global sales make it the best-selling drug in history. Its manufacturer, AbbVie, has aggressively defended the drug, filing more than 240 patents and deploying legal threats and tweaks to the product to keep patent protections and competitors at bay.
The company’s fight for Humira didn’t stop when the biosimilars finally appeared. The drugmaker has told investors it doesn’t expect to lose much market share through 2024. “We are competing very effectively with the various biosimilar offerings,” AbbVie CEO Richard Gonzalez said during an earnings call.
How AbbVie Maintains Market Share
One of AbbVie’s strategies was to warn health plans that if they recommended biosimilars over Humira they would lose rebates on purchases of Skyrizi and Rinvoq, two drugs with no generic imitators that are each listed at about $120,000 a year, according to PBM officials. In other words, dropping one AbbVie drug would lead to higher costs for others.
Industry sources also say the PBMs persuaded AbbVie to increase its Humira rebates — the end-of-the-year payments, based on total use of the drug, which are mostly passed along by the PBMs to the health plan sponsors. Although rebate numbers are kept secret and vary widely, some reportedly jumped this year by 40% to 60% of the drug’s list price.
The leading PBMs — Express Scripts, Optum, and CVS Caremark — are powerful players, each part of a giant health conglomerate that includes a leading insurer, specialty pharmacies, doctors’ offices, and other businesses, some of them based overseas for tax advantages.
Yet challenges to PBM practices are mounting. The Federal Trade Commission began a major probe of the companies last year. Kroger canceled its pharmacy contract with Express Scripts last fall, saying it had no bargaining power in the arrangement, and, on Aug. 17, the insurer Blue Shield of California announced it was severing most of its business with CVS Caremark for similar reasons.
Critics of the top PBMs see the Humira biosimilars as a potential turning point for the secretive business processes that have contributed to stunningly high drug prices.
Although list prices for Humira are many times higher than those of the new biosimilars, discounts and rebates offered by AbbVie make its drug more competitive. But even if health plans were paying only, say, half of the net amount they pay for Humira now — and if several biosimilar makers charged as little as a sixth of the gross price — the costs could fall by around $30,000 a year per patient, said Greg Baker, CEO of AffirmedRx, a smaller PBM that is challenging the big companies.
Multiplied by the 313,000 patients currently prescribed Humira, that comes to about $9 billion in annual savings — a not inconsequential 1.4% of total national spending on pharmaceuticals in 2022.
The launch of the biosimilar Yusimry, which is being sold through Mark Cuban’s Cost Plus Drugs pharmacy and elsewhere, “should send off alarms to the employers,” said Juliana Reed, executive director of the Biosimilars Forum, an industry group. “They are going to ask, ‘Time out, why are you charging me 85% more, Mr. PBM, than what Mark Cuban is offering? What is going on in this system?’”
Cheaper drugs could make it easier for patients to pay for their drugs and presumably make them healthier. A KFF survey in 2022 found that nearly a fifth of adults reported not filling a prescription because of the cost. Reports of Humira patients quitting the drug for its cost are rife.
Convenience, Inertia, and Fear
When Sue Lee of suburban Louisville, Kentucky, retired as an insurance claims reviewer and went on Medicare in 2017, she learned that her monthly copay for Humira, which she took to treat painful plaque psoriasis, was rising from $60 to $8,000 a year.
It was a particularly bitter experience for Lee, now 81, because AbbVie had paid her for the previous three years to proselytize for the drug by chatting up dermatology nurses at fancy AbbVie-sponsored dinners. Casting about for a way to stay on the drug, Lee asked the company for help, but her income at the time was too high to qualify her for its assistance program.
“They were done with me,” she said. Lee went off the drug, and within a few weeks the psoriasis came back with a vengeance. Sores covered her calves, torso, and even the tips of her ears. Months later she got relief by entering a clinical trial for another drug.
Health plans are motivated to keep Humira as a preferred choice out of convenience, inertia, and fear. While such data is secret, one Midwestern firm with 2,500 employees told KFF Health News that AbbVie had effectively lowered Humira’s net cost to the company by 40% after July 1, the day most of the biosimilars launched.
One of the top three PBMs, CVS Caremark, announced in August that it was creating a partnership with drugmaker Sandoz to market its own cut-rate version of Humira, called Hyrimoz, in 2024. But Caremark didn’t appear to be fully embracing even its own biosimilar. Officials from the PBM notified customers that Hyrimoz will be on the same tier as Humira to “maximize rebates” from AbbVie, Tennessee’s Athow said.
Most of the rebates are passed along to health plans, the PBMs say. But if the state of Tennessee received a check for, say, $20 million at the end of last year, it was merely getting back some of the $48 million it already spent.
“It’s a devil’s bargain,” said Michael Thompson, president and CEO of the National Alliance of Healthcare Purchaser Coalitions. “The happiest day of a benefit executive’s year is walking into the CFO’s office with a several-million-dollar check and saying, ‘Look what I got you!’”
Executives from the leading PBMs have said their clients prefer high-priced, high-rebate drugs, but that’s not the whole story. Some of the fees and other payments that PBMs, distributors, consultants, and wholesalers earn are calculated based on a drug’s price, which gives them equally misplaced incentives, said Antonio Ciaccia, CEO of 46Brooklyn, a nonprofit that researches the drug supply chain.
“The large intermediaries are wedded to inflated sticker prices,” said Ciaccia.
AbbVie has warned some PBMs that if Humira isn’t offered on the same tier as biosimilars it will stop paying rebates for the drug, according to Alex Jung, a forensic accountant who consults with the Midwest Business Group on Health.
AbbVie did not respond to requests for comment.
One of the low-cost Humira biosimilars, Organon’s Hadlima, has made it onto several formularies, the ranked lists of drugs that health plans offer patients, since launching in February, but “access alone does not guarantee success” and doesn’t mean patients will get the product, Kevin Ali, Organon’s CEO, said in an earnings call in August.
If the biosimilars are priced no lower than Humira on health plan formularies, rheumatologists will lack an incentive to prescribe them. When PBMs put drugs on the same “tier” on a formulary, the patient’s copay is generally the same.
In an emailed statement, Optum Rx said that by adding several biosimilars to its formularies at the same price as Humira, “we are fostering competition while ensuring the broadest possible choice and access for those we serve.”
Switching a patient involves administrative costs for the patient, health plan, pharmacy, and doctor, said Marcus Snow, chair of the American College of Rheumatology’s Committee on Rheumatologic Care.
Doctors’ Inertia Is Powerful
Doctors seem reluctant to move patients off Humira. After years of struggling with insurance, the biggest concern of the patient and the rheumatologist, Snow said, is “forced switching by the insurer. If the patient is doing well, any change is concerning to them.” Still, the American College of Rheumatology recently distributed a video informing patients of the availability of biosimilars, and “the data is there that there’s virtually no difference,” Snow said. “We know the cost of health care is exploding. But at the same time, my job is to make my patient better. That trumps everything.”
“All things being equal, I like to keep the patient on the same drug,” said Madelaine Feldman, a New Orleans rheumatologist.
Gastrointestinal specialists, who often prescribe Humira for inflammatory bowel disease, seem similarly conflicted. American Gastroenterological Association spokesperson Rachel Shubert said the group’s policy guidance “opposes nonmedical switching” by an insurer, unless the decision is shared by provider and patient. But Siddharth Singh, chair of the group’s clinical guidelines committee, said he would not hesitate to switch a new patient to a biosimilar, although “these decisions are largely insurance-driven.”
HealthTrust, a company that procures drugs for about 2 million people, has had only five patients switch from Humira this year, said Cora Opsahl, director of the Service Employees International Union’s 32BJ Health Fund, a New York state plan that procures drugs through HealthTrust.
But the biosimilar companies hope to slowly gain market footholds. Companies like Coherus will have a niche and “they might be on the front end of a wave,” said Ciaccia, given employers’ growing demands for change in the system.
The $2,000 out-of-pocket cap on Medicare drug spending that goes into effect in 2025 under the Inflation Reduction Act could spur more interest in biosimilars. With insurers on the hook for more of a drug’s cost, they should be looking for cheaper options.
For Kaiser Permanente, the move to biosimilars was obvious once the company determined they were safe and effective, said Mary Beth Lang, KP’s chief pharmacy officer. The first Humira biosimilar, Amjevita, was 55% cheaper than the original drug, and she indicated that KP was paying even less since more drastically discounted biosimilars launched. Switched patients pay less for their medication than before, she said, and very few have tried to get back on Humira.
Prescryptive, a small PBM that promises transparent policies, switched 100% of its patients after most of the other biosimilars entered the market July 1 “with absolutely no interruption of therapy, no complaints, and no changes,” said Rich Lieblich, the company’s vice president for clinical services and industry relations.
AbbVie declined to respond to him with a competitive price, he said.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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2 years 1 month ago
Health Care Costs, Health Industry, Pharmaceuticals, Drug Costs, Kentucky, New York, Prescription Drugs, Tennessee
KFF Health News' 'What the Health?': Welcome Back, Congress. Now Get to Work.
The Host
Julie Rovner
KFF Health News
Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
Congress returns from its August recess with a long list of things to do and not a lot of time to do them. The fiscal year ends Sept. 30, and it’s possible that lawmakers will fail to finish work not only on the annual appropriations bills, but also on any short-term spending bill to keep the government open.
Meanwhile, Medicare has announced the first 10 drugs whose prices will be negotiated under the Inflation Reduction Act of 2022. Exactly how the program will work remains a question, however. Even how the process will begin is uncertain, as drugmakers and other groups have filed lawsuits to stop it.
This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Alice Miranda Ollstein of Politico.
Panelists
Rachel Cohrs
Stat News
Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Alice Miranda Ollstein
Politico
Among the takeaways from this week’s episode:
- Hard-line Republicans are refusing to back even a temporary government spending bill, suggesting a government shutdown looms — with repercussions for health programs. While the Senate and House have come to intra-chamber agreements on subjects like community health center funding or even have passed spending bills, Congress as a whole has been unable to broker an overarching deal.
- A coalition of House Republicans is falsely claiming that global HIV/AIDS funding through PEPFAR promotes abortion and is battling efforts to extend the program’s funding. PEPFAR is a bipartisan effort spearheaded by then-President George W. Bush and credited with saving millions of lives.
- The PEPFAR fight underscores the dysfunction of the current Congress, which is struggling to fund even a highly regarded, lifesaving program. Another example is the months-long blockade of military promotions by a freshman Republican senator, Alabama’s Tommy Tuberville, a member of the Senate Armed Services Committee. His objections over an abortion-related Pentagon policy have placed him at odds with top military leaders, who recently warned that his heavy-handed approach is weakening military readiness.
- The Biden administration recently announced new staffing requirements for nursing homes, as a way to get more nurses into such facilities. But how long will compliance take, considering ongoing nursing shortages? And the drug industry is reacting to the news of which 10 drugs will be up first for Medicare negotiation, with much left to be sorted out.
- In abortion news, a Texas effort to block patients seeking abortions from using the state’s roads is spreading town to town — and, despite being dubiously enforceable, it could still have a chilling effect.
Also this week, Rovner interviews Meena Seshamani, who leads the federal Medicare program, about the plan to start negotiating drug prices.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: JAMA Health Forum’s “Health Systems and Social Services — A Bridge Too Far?” by Sherry Glied and Thomas D’Aunno.
Alice Miranda Ollstein: The Washington Post’s “Heat’s Hidden Risk,” by Shannon Osaka, Erin Patrick O’Connor, and John Muyskens.
Rachel Cohrs: The Wall Street Journal’s “How Novartis’s CEO Learned From His Mistakes and Got Help From an Unlikely Quarter,” by Jared S. Hopkins.
Joanne Kenen: Politico’s “How to Wage War on Conspiracy Theories,” by Joanne Kenen, and “Court Revives Doctors’ Lawsuit Saying FDA Overstepped Its Authority With Anti-Ivermectin Campaign,” by Kevin McGill.
Also mentioned in this week’s episode:
- The Washington Post’s “Highways Are the Next Antiabortion Target. One Texas Town Is Resisting,” by Caroline Kitchener.
- KFF Health News’ “Biden Administration Proposes New Standards to Boost Nursing Home Staffing,” by Jordan Rau.
- Stat’s “The Curious Case of J&J’s Stelara, The Unluckiest Drug on Medicare’s List,” by Rachel Cohrs.
Click to open the transcript
Transcript: Welcome Back, Congress. Now Get to Work.
[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]
Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Sept. 7, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Rachel Cohrs of Stat News.
Rachel Cohrs: Good morning.
Rovner: Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hi, everybody.
Rovner: And Alice Miranda Ollstein of Politico.
Alice Miranda Ollstein: Hello.
Rovner: Later in this episode, we’ll have an interview with Meena Seshamani, who runs the Medicare program for the federal government, with an update on the Medicare drug negotiation debate as, we’ll discuss, the first 10 drugs that will be subject to negotiation were announced last week. But first, this week’s news. So Labor Day is behind us, and Congress is back — sort of. The Senate is back. The House returns next week. And there are lots of questions to be answered this fall, starting with whether or not Congress can finish the annual spending bills before the start of fiscal 2024 on Oct. 1. Spoiler: They cannot. But there’s also a real question whether Congress can even pass a short-term bill to keep the government running while lawmakers continue to work on the rest of the appropriations. As of now, what do you guys think are the odds that we’re going to end up with some kind of government shutdown at the end of the month?
Ollstein: Well, it’s whether it happens at the end of the month or at the end of the year, really. Folks seem pretty convinced that it will happen at some point. It could be short-lived. But, yeah, like you said, you have some hard-line House Republicans who say they won’t support even a temporary stopgap bill without spending cuts, policy changes, without sort of extracting some of their demands from leadership. And you could work around that in the House by cobbling together a coalition of Republicans and Democrats. But that also puts [House Speaker Kevin] McCarthy’s leadership in jeopardy. And so, we’re having sort of the same dynamic play out that we saw earlier this year, trying to navigate between the hard-line House Republicans and, you know, the more vulnerable swing districts’ members. So it’s … tough.
Rovner: Yeah, it’s the Republicans from districts that [President Joe] Biden won … basically.
Ollstein: Yeah. And so you have this weird game of chicken right now where both the House and Senate are trying to pass whatever they can to give themselves more leverage in the ultimate House-Senate negotiations. They think, OK, if we pass five bills and they only pass one, you know, then we have the upper hand. So we’ll see where that goes.
Rovner: It’s funny, because the Senate has been a well-oiled machine this year on the spending bills, which is unusual. I was about to say I will point out that there are two women: the chairman and ranking member. But that’s actually also true in the House. We do have women running the appropriations process this year. But I was amused that Kevin McCarthy, sometime during August, a couple of weeks ago, said, you know, very confidently, well, we’ll pass a short-term spending bill. You know, we won’t let the government shut down. And by the next day, the hard-line Republicans, the right wing, were saying, yeah, no you won’t. You’re going to have to deal with us first. And, obviously, there’s lots of health stuff that’s going to get caught up in that. The end of the fiscal year also marks the end of funding authority for a number of prominent programs. This is not the same as the appropriations programs whose authorizations lapse can continue, although things can get complicated. PEPFAR, the two-decade-old bipartisan program that provides AIDS and HIV prevention and treatment around the world, is one of those programs that, at least as of now, looks pretty stuck. Alice, is there any movement on this? We’ve talked about it before.
Ollstein: Not yet. So the latest we know, and we got this last night, is that [Foreign Relations Committee] Chairman [Bob] Menendez in the Senate is floating a new compromise. Basically, supporters of PEPFAR have been pushing for the full five-year standard reauthorization. And a coalition of House Republicans who are claiming that PEPFAR money is going to abortion say they want no reauthorization at all. They just want the program to sort of limp along through appropriations. So between five years and zero, Menendez is now suggesting a three-year extension. There is a huge desire not to just have the one-year funding patch because that would kick all of this into the heat of the 2024 season. And if you think the debate is ugly now over abortion and federal spending, just wait until 2024.
Kenen: I mean, this … [unintelligible] money … it’s saved tens of millions of lives — and with bipartisan support in the past.
Rovner: It was a Republican initiative.
Kenen: Right. It was President Bush, George the second.
Rovner: George W. Bush. Yeah.
Kenen: And they’re not saying they’re actually going out and using the AIDS dollars to conduct, to actually do abortions. They’re saying that there’s, you know, they’re in the world of abortion and they’re promoting abortion, etc., etc. So the conversation gets really, really, really, really muddled. Under U.S. law, they cannot use U.S. dollars for abortion under the Hyde Amendment, you know, all sorts of other foreign policy rules. So it’s hard to overstate how important this program has been, particularly in Africa. It has saved millions and millions of lives. And I think Alice might have broken the story originally, but it got caught up in abortion politics, and it caught people by surprise. This is not something … everything in Washington gets caught up in politics, except this! So I think it’s been quite shocking to people. And it’s, I mean — life-and-death sounds like a, you know, it’s a Washington cliché — this is life-and-death.
Ollstein: Yeah, absolutely. And, you know, even though the program won’t shut down if they don’t manage to get a reauthorization through, you know, I talked to people who run PEPFAR services in other countries, and they said that, you know, having this year-to-year funding and instability and uncertainty — you know, they won’t be able to hire, they won’t be able to do long-term planning. They said this will really undermine the goal to eliminate HIV transmission by 2030.
Cohrs: Oh, I actually did just want to jump in about another Sept. 30 deadline, because there was a big development this week. I know we were just talking about long-term planning. There is funding for community health centers that’s expiring at the end of September as well. DSH cuts could go into effect for hospitals. We do this routine every so often, but the House is actually more in step than the Senate on this issue; they released — at least Republicans released — a draft legislation, where all three committees of jurisdiction are in agreement about how to proceed. There are some transparency measures in there.
Rovner: The three committees in the House.
Cohrs: In the House. Yes, yes, we’re talking about the House. Yeah. So, they have reconciled their differences here and are hoping to go to the floor this month. So, I think they are out of the gate first, certainly with some sort of longer-term solution here. Again, could get punted. But I think it is a pretty big development when we’re talking about these extenders that the industry cares about very much.
Kenen: Congress is so polarized that it can’t even do the things that it agrees on. And we have seen this before where CHIP [Children’s Health Insurance Program] got caught up a few years ago. Community health clinics have gotten caught right in that same bill, right? But, you know, we really have this situation where it’s so dysfunctional they can’t even move fully on things that everybody likes. And community health centers date back to the early ’60s. However, they got a really big expansion, again, under second President Bush. And they’re popular, and they serve a need, and everybody likes them.
Rovner: They got a bigger expansion under the Affordable Care Act.
Kenen: Right, but they, you know — but I think that the Bush years was like the biggest in many years. And then they got more. So again, I mean, are they going to shut their doors? No. Is it going to be a mess? It is already a mess. They can’t — they don’t know what’s coming next. That’s no way to run a railroad or a health clinic.
Rovner: All right, well, one more while we’re on the subject of abortion-related delays: Alabama Sen. Tommy Tuberville is still blocking Senate approval of routine military promotions to protest the Biden administration’s policy of allowing funding for servicewomen and military dependents to travel for abortions if they’re posted to states where it’s banned. Now, the secretaries of the Army, Navy, and Air Force are joining together to warn that Tuberville’s hold is threatening military readiness. Tuberville apparently went on Fox News last night and said he’s got more people who are coming to support him. Is there any end to this standoff in sight? I mean, people seem to be getting kind of upset about it. It’s been going on since, what, February?
Ollstein: Yeah, there is not yet an end in sight. So far, all of the attempts to pressure Tuberville to back down have only hardened his resolve, it seems, you know, and he’s gone beyond sort of his original statement of, you know, all of this is just to get rid of this policy that doesn’t pay for abortions; it just allows people to travel out of state if they’re stationed — they don’t get to choose where they’re stationed — if they’re stationed somewhere where abortion is not legal or accessible. And so now he’s making claims about other things in the military he considers too woke. He’s criticized some of these individual nominees themselves that he’s blocking, which was not sort of part of the original stand he took. And so, it’s tough, and there isn’t enough floor time to move all of these and go around him. And so this pressure campaign doesn’t seem to be really making any headway. So I don’t really see how this gets resolved at this point.
Kenen: Except that other Republicans are getting a little bit more public. I mean, they were sort of letting him run out for a while. And there’s more Republicans who are clearly getting enough of this. But I mean, unless McConnell can really get him to move — and we don’t know what’s gone on behind closed doors, but we’re certainly not seeing any sign of movement. In fact, as Alice said, he’s digging in more. I mean, like, Marines and woke are not the two words you usually hear in one sentence, but in his worldview, they are. So, I think it’s unprecedented. I mean, I don’t think anyone’s ever done this. It’s not like one or two people. It’s like the entire U.S. military command can’t move ahead.
Rovner: I’ve been doing this a very long time, and I don’t remember anything quite like this. Well, the one thing that we do expect to happen this fall is legislation on — and Rachel, you were referring to this already — sort of health care price transparency and PBMs, the pharmacy benefit managers. Where are we with that? They were supposed to work on it over the August break. Did they?
Cohrs: They were supposed to work on it. The House was clearly working on it and reconciling some of their differences. They’re planning to introduce legislative text on Friday. So, I think Democrats aren’t on board yet, so things could change from the draft they had been circulating early this week. But again, Republicans don’t really need Democrats to move forward, at least in the House. The Senate has been pretty quiet so far. Not to say that no work has gone on, but they certainly weren’t ready for the rollout in the same way that the House was. You know, I think there are still some big questions about, you know, what they’re planning to accomplish with insulin policy, how they’re planning to fit together this jigsaw puzzle of PBM transparency and reforms that have come out of different committees. And I think it’ll come down to [Senate Majority Leader] Sen. Schumer making some tough choices. And from my understanding, that hasn’t quite happened yet. But if the actual showdown happens November, December, they still have some time.
Rovner: Yeah. Now they’re not going out early. They’re clearly going to be fighting over the appropriation. So, the legislative committees have plenty of time to work on these other things. All right. Well, let’s turn to Medicaid for a moment. The quote-unquote “unwinding” continues as states move to redetermine who remains eligible for the program and who doesn’t following the pandemic pause. As predicted, it’s been a bit of a bumpy road. And now it seems a bunch of states have been incorrectly dropping children from Medicaid coverage because their parents are no longer eligible. That’s a problem because nationwide, income limits for children’s eligibility is higher than parents’. In some states, it is much higher. I remember after Hurricane Katrina, in Louisiana, parents were only eligible if they earned 15% of poverty. Somebody said 50, and the Medicaid director said, “No, 15, one-five.” Whereas kids are eligible to, I believe it’s 200% of poverty. And I think that’s a national level.
Kenen: Now, in some states it’s higher.
Rovner: Yes. But I say this is happening in a bunch of states because federal government won’t tell us how many or which ones. We do know it’s more than a dozen, but this is the second time the administration has admonished states for wrongly canceling Medicaid coverage. And they wouldn’t say which states were involved at that time either. Is this an effort to keep this as apolitical as possible, given that the states most likely to be doing this are red states who are trying to remove ineligible people from Medicaid as fast as they can, that they’re trying to sort of keep this from becoming a Republican versus Democrat thing.
Ollstein: It seems like, from what we’re hearing, that the administration is really wary of publicly picking a fight with these states. They want the states to work with them. And so, even if the states are going about this in a way they think is totally wrong, they don’t want to just put them publicly on blast, because they think that’ll make them, again, double down and refuse to work with the government at all. And so, they’re trying to maintain some veneer of cooperation. But at the same time, you’re having, you know, millions of people, including children, falling through the cracks. And so, you know, we have sort of this sternly-worded-letter approach and we’ll see if that accomplishes anything, and if not, you know, what measures can be taken. You know, the administration also created a way for states to hit pause on the process and take a little more time and do a little more verification of people’s eligibility. And some — a couple states — have taken advantage of that, and it’s been successful in, you know, having fewer people dropped for paperwork reasons, but it’s not really happening in the states where it sort of most needs to happen, according to experts.
Rovner: The administration has had fingers pointed at it, too, because apparently it approved some of these plans from the states that were going to look at total family income without realizing that, oh, that meant that kids who are still eligible could end up losing coverage because their parents are no longer eligible.
Kenen: Right. And I also read something yesterday that in some cases it’s sort of a technical issue rather than a “how much outreach and what your intentions are,” that it’s a programing issue, which is related to what Julie just said about the plan. So, it’s not that these states set about to drop these kids, and there may be some kind of goodwill to fix it, in which case you don’t want to get in — and I don’t know that it’s 100% red states either. So —
Rovner: No, that’s clear. We assume, because they’re the ones going fastest, but we do not know.
Kenen: Right, so that there seems to be some kind of — the way it was set up, technically, that can be remedied. And if it’s a technical fix as opposed to an ideological fight, you don’t really want to — you want to figure out how to reprogram the computer or whatever it is they have to do and then go back and catch the people that were lost. So, they’ve been pretty low-key about politicizing rewinding in general. But on the kids, I think they’re going to be even more — CHIP passed, another thing with bipartisan support that’s a mess. I mean, it seems to be the theme of the day. But, you know, CHIP was created on a bipartisan basis, and it’s always been sustained on a bipartisan basis. So, I think that the issue, I don’t know how technically easy it is to fix, but there’s a big difference in how the administration goes after someone that’s intentionally doing something versus someone who wrote their computer programmer set something up wrong.
Rovner: Well, we will definitely keep on this one.
Kenen: But it’s a big mess. It’s a lot of kids.
Rovner: It is a big mess. And let’s turn to the thing that is not bipartisan in Congress, and that is —
Kenen: That’ll be a bigger mess.
Rovner: — Medicare drug negotiations. Yes. While we were away, the federal government released its much-anticipated list of the 10 brand-name drugs that will be the first tranche up for potential price negotiation. I say potential, because the companies have the option of negotiating or not — sort of — and because there are now, I think, nine lawsuits challenging the entire program. My interview with Medicare administrator Meena Seshamani will get into the nuts and bolts of how the negotiation program is supposed to work. But Rachel, tell us a little bit about the drugs on the list and how their makers are trying to cancel this entire enterprise before it even begins.
Cohrs: Sure. So, a lot of these drugs that we’re seeing on the list are blood thinners. Some are diabetes medications. There are drugs for heart failure, rheumatoid arthritis, Crohn’s disease, and there’s also a cancer treatment, too. But I think overall, the drugs were chosen because they have high cost to Medicare. And it was —
Rovner: So that either could mean a lot of people use an inexpensive drug —
Cohrs: Yes.
Rovner: — or a few people use a very expensive drug.
Cohrs: Correct. And it was Wall Street’s favorite parlor game to try to guess what drugs were going to be on this list of 10 drugs that are going to be the guinea pigs to go through this program for the very first time. But it was interesting, because there were a few surprises. Medicare officials were using newer data than Wall Street analysts had access to. So, there were a couple drugs, especially further down on the list, that people used more in the period CMS [Centers for Medicare & Medicaid Services] was studying than had been used previously. So, we saw a couple very interesting instances of a drug being chosen for the list, even though it just kind of fell through the cracks. It was J&J’s [Johnson & Johnson’s] Stelara. It’s a Crohn’s disease treatment, and it does have competition coming in the market soon, but just because of a fluke of kind of when it was approved by the FDA, it just missed cutoffs for some of these exemptions and is now subject to some pretty significant discounts through the program.
Rovner: We’ll link to your very sad story about Stelara.
Cohrs: Sad for the company, but not sad for the patients who will hopefully be paying less for this medication. And there’s also the case of Astellas [Pharma Inc.], which makes a prostate cancer drug that’s very expensive. A lot of people expected that to be selected, but actually wasn’t. And Astellas had sued the Biden administration already before the list came out and then had to withdraw their lawsuit yesterday because their argument that they were going to be harmed by this legislation was made much weaker by the fact that they weren’t selected for this first year of the program. So, who knows? They could dust off their arguments a year from now or two years from now. But it was interesting to see kind of some of these surprises on the list. Again, there are still several, like you mentioned, outstanding lawsuits in several different jurisdictions. I think the main one that we’re watching is by the [U.S.] Chamber of Commerce, which requested a preliminary injunction by the end of this month. So, we’ll see if that comes through. But it is a very long road to 2026. There might be a new administration by then. So, I think there are still a lot of questions about whether this reaches the finish line. But I think it’s a very important step for CMS to get this list out there in the world.
Rovner: So, I spent some time digging in my notes from earlier years, and I dug up notes from an interview I did on Aug. 26 with a spokesperson from the drug industry about how the Medicare drug benefit, quote, “impact the ability of companies to research new medicines. And if that happens, the elderly would be the ones hurt the most.” That quote, by the way, was from Aug. 26 of 1987. Some things truly never change. But is this maybe, possibly, the beginning of the end of drugmakers being able to charge whatever they want in the United States? Because it’s the only country where they can.
Cohrs: Oh, they can still charge whatever they want. This law doesn’t change that. It just changes the fact that Medicare won’t be paying whatever drugmakers happen to charge for an unlimited amount of time. Like, they can still charge whatever they want to Medicare for as long as they can get on the market before they’re selected for this negotiation program. But certainly there could be significant cost — significant savings to Medicare, even if those prices are high. And it’s just kind of a measure that forces price reductions, even if the generic or biosimilar market isn’t functioning to lower those prices through competition.
Kenen: Right. And it’s only Medicare. So, people who are not on Medicare — insurance companies also negotiate prices, but they’re not the government. It’s different. But I mean, these drugs are not going to start being, you know, three bucks.
Rovner: But they may stop being 300,000.
Kenen: Well, we don’t know, because there are some people who think that if Medicare is paying less, they’re going to charge everybody else more. We just don’t know. We don’t know what their behavior is going to be. But no, this does not solve the question of affordability of medication in the United States.
Rovner: The drug companies certainly think it’s the camel’s nose under the tent.
Kenen: They have some medicine for camels’ noses that they can charge a lot of money for, I’m sure.
Rovner: I bet they do. While we are on the subject of things that I have covered since the 1980s, last week the Biden administration finally put out its regulation requiring that nursing homes be staffed 24/7/365 by, you know, an actual nurse. One of the first big reconciliation bills I covered was in 1987 — that was a big year for health policy — and it completely overhauled federal regulation of nursing homes, except for mandating staffing standards, because the nursing homes said they couldn’t afford it. Basically, that same fight has been going on ever since. Except now the industry also says there aren’t enough nurses to hire, even if they could afford it. Yet patient advocates say these admittedly low staffing ratios that the Biden administration has put out are still not enough. So, what happens now? Is this going to be like the prescription drug industry, where they’re going to try to sue their way out of it? Or is it going to be more like the hospital transparency, where they’re just not going to do it and say, “Come and get us”?
Kenen: My suspicion is litigation, but it’s too soon to know. I assume that either one of the nursing home chains — because there are some very big corporations that own a lot of nursing homes — there are several nursing home trade industry groups, for-profit, nonprofit. Does one owner — is in an area where there is a workforce shortage, because that does exist. I mean, I’d be surprised if we don’t see some litigation, because when don’t we see that? I mean, it’s rare. That’s the norm in health care, is somebody sues. Some of the workforce issues are real, but also this proposal doesn’t go into effect tomorrow. It’s not like — but I mean, there are issues of the nursing workforce. There are issues about not just the number of nurses, but do we have them in the right places doing the right jobs? It’s not just RNs [registered nurses]; there are also shortages of other direct care workers. I did a story a few months ago on this, and there are actually nursing homes that have closed entire wings because they don’t have enough staff, and those are some of the nonprofits. There are nursing issues.
Rovner: And a lot of nursing home staff got sick at the beginning of the covid pandemic, and many of them died before there were good treatments. I mean, it’s always been a very hard and not very well-paid job to care for people in nursing homes. And then it became a not very pleasant, not very well-paid, and very deadly job. So I don’t think that’s probably helping the recruitment of people to work in nursing.
Kenen: Right, but the issue — I think a lot of people, when you have your first family experience with a nursing home or, you know, or those of us reporters who hadn’t been familiar with them until we went and did some stories on them, I think people are surprised at how little nursing there actually is. It’s nurses’ aides; it’s, you know, what they used to call licensed practical nurses or nursing assistants; and CNAs, certified nursing assistants. They’re various; different states have different names. But these are not four-year RNs. The amount of actual nursing — forget doctors. I mean, there’s just not a lot of RNs in nursing homes. There’s not a lot of doctors who spend time in nursing homes. A lot of the care is done through people with less training. So, this is trying to get more nurses in nursing homes. And there’s been a lot of stories about inadequate care. KFF Health News — I think it was Jordan Rau who did them. There have been some good stories about particularly nights and weekends, just really nobody there. These are fragile people. And they wouldn’t be in a nursing home if they weren’t fragile people. There are a lot of horror stories. At the same time, there are some legitimate — How fast can you do this? And how well can you do it? And can you do it across the country? I mean, it’s going to take some working out, but I don’t think anybody thinks that nursing home care in this country is, you know, a paragon of what we want our elders to experience.
Rovner: And the nursing home industry points out, truthfully, that most nursing home payments now come from Medicaid, because even people who start out being able to afford it themselves often run out of money and then they end up — then they qualify for Medicaid. And Medicaid in many states doesn’t pay very much, doesn’t pay nursing homes very much. So it’s hard for these companies. We’re not even talking about the private equity companies. A lot of nursing homes operate on the financial edge. I mean, there are —our long-term care policy in this country is, you know, just: What happens, happens, and we’ll worry about it later. And this has been going on for 50 years. And now we have baby boomers retiring and getting older and needing nursing home care. And at some point, this is all going to come to a head. All right. Well, let us turn to abortion. This week marks the second anniversary of the Texas abortion ban, the so-called heartbeat bill, that bans most abortion and lets individuals sue other individuals for helping anyone getting an abortion, which the Supreme Court, if you’ll recall, allowed to take effect months before it formally overturned Roe v. Wade. And, I guess not surprisingly, Texas is still in the news about abortion. This time. The same people who brought us Texas SB 8, which is the heartbeat bill, are going town by town and trying to pass ordinances that make it illegal to use roads within that town’s borders to help anyone obtain an abortion. They’re calling it abortion “trafficking.” Now, it’s not only not clear to me whether a local ordinance can even impact a state or an interstate highway, which is what these laws are mostly aimed at; but how on earth would you enforce something like this, even if you want to?
Ollstein: So, my impression is that they do not want to. These are not meant to be practical. They are not meant to be enforced, because how would you do it other than implementing a very totalitarian checkpoint system? This is meant to —
Rovner: Yes, have you been drinking and are you on your way to get an abortion?
Ollstein: Right. Right, right, right. So, it seems like the main purpose is to have a chilling effect, which it very well could have, even if it doesn’t stand up in court. You know, you also have this situation that we’ve had play out in other ways, where people are challenging laws in courts for having a chilling effect, and courts are saying, look, you have to wait till you actually get prosecuted and challenge it, you know, do an as-applied challenge. If you can’t challenge unless there’s a prosecution but there’s no prosecutions, then you sort of just have it hanging over your head like a cloud.
Kenen: Like Alice said, there’s no way you could do this. Like, what do you do, stop every car and give every person a pregnancy test? Are you going to, like, have, you know, ultrasounds on the E-ZPass monitors? Like, you go through it, it checks your uterus. So, I mean, it’s just not — you can’t do this. But I think one of the things that was really interesting in one of the stories I read about it, I think it was in The Washington Post, was that when they interviewed people about it, they thought it was trafficking, like really trafficking, that there were pregnant woman being kidnapped and forced to have an abortion. So even if you’re pro-choice, you might say, “Oh, I’m against abortion trafficking. I mean, I don’t want anyone to be forced to have an abortion.” You know, so, it’s — the wording and the whole design of it is, they know what they’re doing. I mean, they want to create this confusion. They want to create a disincentive. There’s no way — you know, radar guns? I mean, it’s just, there’s no way of doing this. But it is part of the effort to clamp down even further on a state that has already really, really, really clamped down.
Rovner: Although, I mean, if one could sue and if one could then know about something that’s happening and then you could presumably take the person to court and say, I know you were pregnant and now you’re not, and somebody took you in a car to New Mexico or whatever …
Kenen: You can’t even prove — how do you prove that it wasn’t a miscarriage?
Rovner: That’s —
Kenen: Right? I mean …
Rovner: I’m not saying — I’m not talking about the burden of proof. I’m just saying in theory, somebody could try to have a case here. I mean, but we certainly know that Texas has done a very good job creating a chilling effect, because we still have this lawsuit from the women who were not seeking abortions, who had pregnancy complications and were unable to get health-saving and, in some cases, lifesaving care promptly. And that’s still being litigated. But meanwhile, we have, you know, just today a study out from the Guttmacher Institute that showed that despite how well these states that are banning abortion have done in banning abortion, there were presumably more abortions in the first half of 2023 than there were before these bans took effect, because women from ban states were going to states where it is not banned. And there has been, ironically, better access in those states where it is not banned. I can’t imagine that this is going to please the anti-abortion community. One would think it would make them double down, wouldn’t it?
Ollstein: We know that people are leaving their states to obtain an abortion. We also know that that’s not an option for a lot of people, and not just because a lot of people can’t afford it or they can’t take time off work, they can’t get child care — tons of reasons why somebody might not be able to travel out of state. They have a disability, they’re undocumented. We also have — it’s become easier and easier and easier to obtain abortion pills online through, you know, a variety of ways: individual doctors in more progressive states, big online pharmacies are engaged in this, overseas activist groups are engaged in this. And so, you know, that’s also become an option for a lot of people. And anti-abortion groups know that those are the two main methods. People are still continuing to have abortions. And so, they’re continuing to just throw out different ways to try to either, you know, deter people or actually block them from either of those paths.
Rovner: This fight will also continue on. So, that is this week’s news. Now we will play my interview with Meena Seshamani, and then we will come back and do our extra credits.
Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.
I am pleased to welcome back to the podcast Dr. Meena Seshamani, deputy administrator and director of the Center for Medicare at the Centers for Medicare & Medicaid Services. Meena was with us to talk generally about Medicare’s new prescription drug negotiation program earlier this summer. But now that the first 10 drugs subject to negotiation have been announced, we’re pleased to have her back. Welcome.
Meena Seshamani: Thank you for having me.
Rovner: So, remind our listeners, why hasn’t Medicare been able to negotiate drug prices until now — they negotiate prices of everything else — and what changed to make that happen?
Seshamani: That’s right. It was because of the Medicare law that Medicare did not have the ability to negotiate drugs. And thanks to the new drug law, the Inflation Reduction Act, now Medicare has the ability to negotiate the prices of the highest-cost drugs that don’t have competition. And that is part of the announcement that we had on what the first 10 drugs are that have been selected.
Rovner: So, as you say, last week, for the first time and in time for the Sept. 1 deadline, Medicare announced the list of the first 10 drugs that will be part of the first round of price negotiations. Why these 10 specifically? I imagine it’s not a coincidence that the list includes some of the drugs whose ads we see the most often on TV: drugs like Eliquis, Xarelto, and Jardiance, which I of course know how to pronounce because I see the ads all the time.
Seshamani: Well, the process of selection really was laid out in the drug law and also through the guidance that we put out that we had incorporated everybody’s comment for. So, what we did is we started with the, you know, over 7,500 drugs that are covered in the Part D Medicare prescription drug program. From there, we picked those drugs that had been on the market for seven years for a drug product or 11 years for a larger molecule or biologic product that did not have competition. And then from there, there are various exemptions and exclusions that, again, are laid out in the law: for example, drugs that have low Medicare spend, of less than $200 million; drugs that are plasma-derived products; certain orphan drugs. An orphan drug is a drug that is indicated for a rarer disease. So that, again, those specific criteria are laid out in the law and in our guidance. And then there were opportunities for manufacturers to apply, for example, for a small biotech exemption; if their drug was, you know, 80% of their, you know, Medicare Part D revenue, they could say, “Hey, I’m a small biotech.” Again, a lot of these criteria were laid out in the law. Or for a manufacturer of a biosimilar, which is kind of like a generic drug for one of these biologic drugs, they could say, “Hey, we have a biosimilar that’s going to be coming on the market, has a high likelihood of coming on the market, so you should delay negotiating” the brand, if you will, drug. So, again, all of these steps were laid out in the drug law, and those are the steps and criteria that we followed that came to that list of 10 drugs that we published.
Rovner: I did see the makers of one drug — and forgive me, I can’t remember which one it was — saying, “But our drug isn’t that expensive.” On the other hand, their drug is used by a lot of people on Medicare. So, it’s not just the list price of the drug, right? It’s how much it costs Medicare overall.
Seshamani: That’s right. The list is made up of those drugs that have the highest gross total cost to the program — so, price per unit times units of volume that is used.
Rovner: So, how does this negotiation process work? What happens now? Now we have this list of 10 drugs.
Seshamani: Yeah, a lot of this is also laid out in the law, and then we fleshed out further in our guidance. So, from the list of 10 drugs, on Oct. 1, manufacturers now have to decide if they want to participate in the negotiation program. It is a voluntary program. It is our hope that they will come to the table and want to negotiate, because I think we all have shared goals of improving access and affordability and really driving innovation for the cures and therapies that people need. So, Oct. 1, they sign agreements for the negotiation program if they decide to participate. And Oct. 2 is the deadline for gathering data. We put out what’s called an information collection request to say, this is the kind of data we’re thinking about collecting. We got lots of comments and incorporated that. So, that provides the framework for the data that we’re requesting both from the manufacturer of the selected drug, but also, there are aspects open to the public on, you know, how the drug benefits populations, for example. So that’s Oct. 2. Then we’re going to have patient-focused listening sessions, a session for each drug, for patients, their caregivers, you know, other advocates, to be able to share what they see as the benefits of the drugs that are selected. And, we will have meetings with each of the manufacturers. All of that information will come together in an initial offer that CMS will make Feb. 1, 2024, and that is a date that is stipulated in the law. The manufacturer then has about 30 days to evaluate that. If they like that offer, they can agree. If they want, they can make a counteroffer. From that counteroffer, CMS has the ability to agree or to say, “You know, we don’t agree, so let’s now have a series of negotiation meetings.” There can be up to three negotiation meetings that provides that back-and-forth, ultimately leading to an agreed-upon what’s called maximum fair price in the law. And those maximum fair prices are published by Sept. 1, 2024. Again, that Sept. 1 is stipulated in the law. And also as part of this process, CMS will publish a narrative about that negotiation process — you know, the data that was received, you know, the back-and-forth, and also we’ll publish ultimately the maximum fair prices that are agreed to.
Rovner: And does that maximum fair price just apply to Medicare?
Seshamani: The maximum fair price just applies to Medicare. The information will be available. I mean, we don’t have any authority. You know, the commercial sector, they do their own negotiations, and they will continue to do so. But part of this is an opportunity to really further the conversation about how drugs impact the lives of people. We have an opportunity now with some drugs that have been on the market for quite a while, right? Minimum of seven years or 11 years, to see how these drugs work in the real world, in people’s communities, so that we can incorporate that into what it is that we need and want for people to be healthy, to stay out of the hospital, to live meaningful lives. So it’s really an opportunity to further that conversation. And a lot of that data, a lot of those listening sessions, that will all go into our negotiation process and will be part of the narrative that we publish.
Rovner: And what happens if the drug company says either we don’t want to negotiate or we don’t like our final offer? If they say they don’t want to play, what happens?
Seshamani: Julie, I will say again, to start with, we are hopeful that the drug companies will come forward and will want to negotiate because, again, through many conversations that we have had, we do have shared goals of access and affordability and really driving innovation and procures and therapies that people need. And it is a choice for drug companies if they want to participate or not, as stipulated in the law. If a drug company decides not to sign, you know, the negotiation agreement, not to participate in negotiation, then we would refer them to the Department of Treasury for an excise tax. That excise tax is also described in the law. If a drug company has this excise tax applied, they can get out of paying the excise tax. If, No. 1, they decide to come to the table and negotiate, or No. 2, if they exit the Medicare and Medicaid market. So those are kind of their off-ramps, if you will, for that excise tax.
Rovner: So they don’t have to participate in the negotiation, but they also don’t have to participate in Medicare and Medicaid.
Seshamani: Correct.
Rovner: So I saw a lot of complaining last week with the first group of drugs that this is really only going to benefit the people on Medicare who take those drugs. But, in fact, if there really is a lot of money saved, the benefits could go well beyond this, right?
Seshamani: Yeah, I think two points. So, yes, this negotiation is for, you know, some of the highest-cost drugs to the Medicare program that don’t have competition. And the negotiated drug prices apply to the Medicare program. However, as we talked about, this really drives a conversation around drugs and really grounding this negotiation process in the clinical benefit that a drug provides. Considering things like if a drug is easier for someone to take and it’s easier for a caregiver, that can have tangible improvements to the health of the person they’re caring for, right? And I think we have that opportunity to really drive the conversation. And as we know in many aspects of health care, people look to Medicare to see what Medicare is doing. And also, the transparency around providing that narrative of the negotiation, publishing the maximum fair prices that are agreed to. That’s all data that anybody can use as they would like. And I think the second piece that’s important to remember is that negotiation is one very important piece of a very big change to Medicare prescription drug coverage. You know, alongside the $2,000 out-of-pocket tab that’s going to go into effect in 2025, the no-cost vaccines, $35 copay cap for insulin that have already gone into effect. So, really, it is part of a larger sea change in Medicare drug coverage that will help millions of people and their families. You know, I did a roundtable with seniors as we were rolling out the insulin copay cap. And one woman was telling me that she was providing money to her brother every month so that he could pay for his insulin on Medicare. So, really, I mean, this has tremendous impact not just for people on Medicare, but their families, their communities, and really furthers the conversation for the entire system.
Rovner: I was actually thinking of more nitty-gritty money, which is if you save money for Medicare, premiums will be lower for people who are getting drug coverage, and taxpayers will save money, too, right? I mean, this is not just for these people and their families.
Seshamani: Our priority is being able to reach agreement on a fair price for the people who rely on these medications for their lives and the American taxpayer in the Medicare program.
Rovner: I know you can’t comment on lawsuits, and there are many lawsuits already challenging this. But the drug companies, one of their major arguments is that if you limit what they can charge for their drugs, particularly in the United States, the last country where they can charge whatever they want for their drugs, they will not be able to afford to keep the pipeline going to discover more new, important drugs. This is an argument they’ve been making since, I told somebody earlier, since I covered this in the late 1980s. What is your response just to that argument?
Seshamani: Well, I think there were several articles, many articles were written about this on the day that the 10 selected drugs were published. They were published before the stock market opened. And there really was no impact on the stocks of the companies. There were many financial pieces written about this. So I think that is one indication of the fact that the pharmaceutical industry is strong, it is thriving, and it is designed to innovate. And what we’re hoping to do through this negotiation program is really reward the kinds of innovations that we all need, the cures and therapies that people need. Recently, the venture fund that backed Moderna invested in a new startup for small molecules. Bayer has recently invested a billion dollars in the U.S. So you see, the industry very much is thriving. That is what the stock market response also shows. And it’s also the way that we are approaching negotiation to make sure that we’re rewarding the kinds of innovations that people need.
Rovner: Well, Meena Seshamani, thank you so much. I hope we can come back to you as this negotiation process for the first time proceeds.
Seshamani: Absolutely. Thanks again, Julie.
Rovner: OK. We are back, and it’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Alice, why don’t you go first this week?
Ollstein: Yeah, I picked a very sad story from The Washington Post about how people who have schizophrenia are a lot more vulnerable to extreme heat. And it’s rare to find one of these health care stories where you’re just astonished. You know, I had no idea about this. You know, it really walks through not only are people more vulnerable for mental health reasons, you know, it profiles this terrible story of a guy in Phoenix who wandered off into the desert and died because he was experiencing paranoid delusions. But also, just physically, people with schizophrenia have difficulty regulating their body temperature. A lot of medications people take make people more dehydrated, less able to cope. And just an astonishingly high percentage of people hospitalized and killed by extreme heat have these mental illnesses. Of course, they’re also more likely to have housing instability or be out on the street. So just a fascinating piece, and I hope it spurs cities to think of ways to address it. One other small thing I want to compliment is it just, technically, on this article online, they have a little widget where you can convert all of the temperatures cited in the lengthy story from Fahrenheit to Celsius. And I just really appreciated that for allowing, you know, no matter where you live, you sort of get what these high temperatures mean.
Rovner: Yeah, graphics can be really helpful sometimes. Rachel.
Cohrs: Yeah. So I chose a story in The Wall Street Journal and the headline is “How Novartis’s CEO Learned From His Mistakes and Got Help From an Unlikely Quarter,” by Jared S. Hopkins. And I think it was a really interesting and rare look inside one of these pharmaceutical companies. And Novartis hired a Wall Street analyst, Ronny Gal, to help advise them. And I think I had read his analysis before he crossed over to Novartis. So I think it was interesting to just hear how that has integrated into Novartis’ strategy and just how they’re changing their business. But I think as we’re, you know, having these conversations about drug pricing and how strategies are changing due to some of these policies, it is helpful to look at who these executives are listening to and what they’re prioritizing, whose voices in this decision-making process that really has impacts for so many people who are waiting for treatments. And I think there are tough choices that are made all the time. So I just thought it was very illuminating and helpful as we’re talking about how medicines get made in D.C.
Rovner: Yeah, maybe there will be a little more transparency to actually how the drug industry works. We will see. Joanne.
Kenen: With Julie’s permission, I have two that are both short and related. I wrote a piece for Politico Nightly called “How to Wage War on Conspiracy Theories,” and I liked it because it really linked political trends and disinformation and attempts to debunk, with very parallel things going on in the world of health care and efforts to the motivations and efforts to sow trust and what we do and do not know about how to debunk, which we’re not very good at yet. And then the classic example, of course, is the related AP story, which has a very long headline, so bear with me. It’s by Kevin McGill: “Court Revives Doctors’ Lawsuit Saying FDA Overstepped Its Authority With Anti-Ivermectin Campaign.” And, basically, it’s that the 5th Circuit, a conservative court that we’ve talked about before, is saying that the FDA is allowed to inform doctors, but it can’t advise doctors. And I’m not really sure what the difference is there, because if the FDA is informing doctors that ivermectin, we now know, does not work against covid, and it can in fact harm people, there’s ample data, that the FDA is not allowed to tell doctors not to use it. So the ivermectin campaign is a form of disinformation, or misinformation, whatever you want to call it, that at the very beginning, people had, you know, there were some test-tube experiments. We had nothing else. You can sort of see why people wanted … might have wanted to try it. But we have lots and lots and lots of good solid clinical research and human beings and, no, it does not cure covid. It does not improve covid. And it can be damaging. It’s for parasites, not viruses.
Rovner: It can cure worms. Well, I’m going to channel my inner Margot Sanger-Katz this week and choose a story from a medical journal, in this case the Journal of the American Medical Association. Its lead author is Sherry Glied, who’s dean of the NYU Robert F. Wagner Graduate School of Public Service and former assistant HHS [Department of Health and Human Services] secretary for planning and evaluation during the Obama administration — and I daresay one of the most respected health policy analysts anywhere. The piece is called “Health Systems and Social Services — A Bridge Too Far?” And it’s the first article I’ve seen that really does question whether what’s become dogma in health policy over the past decade that — tending to what are called social determinants of health, things like housing, education, and nutrition — can improve health as much as medical care can. Rather, argues Glied, quote, “There are fundamental mismatches between the priorities and capabilities of hospitals and health systems and the task of addressing social determinants of health,” and that, basically, medical providers should leave social services to those who are professional social service providers. That is obviously a gross oversimplification of the argument of the piece, however, but I found it really thought-provoking and really, for the first time, someone saying, maybe we shouldn’t be spending all of this health care money on social determinants of health. Maybe we should let social service money go to the social service determinants of health. Anyway, we will see if this is the start of a trend or just sort of one outlier voice. OK, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our amazing engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me, or X me, or whatever. I’m still there @jrovner, also on Bluesky and Threads. Rachel?
Cohrs: I’m @rachelcohrs on X.
Rovner: Alice.
Ollstein: @AliceOllstein.
Rovner: Joanne.
Kenen: @JoanneKenen on Twitter, @joannekenen1 on Threads.
Rovner: We will be back in your feed next week. Until then, be healthy.
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Mississippi’s Cervical Cancer Deaths Indicate Broader Health Care Problems
Shementé Jones knew something wasn’t right. Her back hurt. She felt pain during sex.
She said she kept telling her doctor something was wrong.
Her doctor told her, “Just wash your underwear in Dreft,” Jones said, referring to a brand of detergent.
Shementé Jones knew something wasn’t right. Her back hurt. She felt pain during sex.
She said she kept telling her doctor something was wrong.
Her doctor told her, “Just wash your underwear in Dreft,” Jones said, referring to a brand of detergent.
Within months of that 2016 appointment, Jones, who lives in a suburb of Jackson, Mississippi, was diagnosed with stage 3 cervical cancer. She underwent a hysterectomy then weeks of radiation therapy.
“I ended up fine,” said Jones, now 43. “But what about all the other women?”
The question is especially pertinent in Jones’ home state, which had the nation’s second-highest age-adjusted cervical cancer mortality rate, 3.4 deaths per 100,000 women and girls annually from 2016 through 2020, behind only Oklahoma, according to National Cancer Institute data. And, for non-Hispanic Black women such as Jones, the rates in the state are even higher — 3.7 deaths per 100,000 people. This all translates to about 50 avoidable deaths of Mississippi women from cervical cancer each year in this largely rural state.
Health care experts said such a high death rate from a cancer that is preventable, detectable, and successfully treatable when found early is a warning sign about the general state of health care in Mississippi.
“They desperately need help there,” said Otis Brawley, a professor of oncology at Johns Hopkins School of Medicine and an expert on health disparities. “Political leadership is incredibly important in turning this around, and in Mississippi, the political leadership don’t give a damn.”
Despite the beauty of Mississippi, from the rolling hills of the Natchez Trace to white-sand beaches on the Gulf of Mexico, and the cultural renown of its famous musicians and storytellers, the state’s reputation is marred by its high rates of poverty. People who live there are accustomed to being the butt of jokes, but it hurts.
“Often Mississippi gets represented poorly,” said Mildred Ridgway, an OB-GYN at the University of Mississippi Medical Center in Jackson.
Recently the state has reeled from crisis after crisis. As recently as March, tornadoes and other severe weather killed more than two dozen people and caused extensive damage. Last year, the water in Jackson, the state capital, was undrinkable for months because of treatment plant failures.
On just about any measure of health, Mississippi ranks near or at the bottom. Nationally, an estimated 10% of people under 65 lack health insurance, but in Mississippi it is about 14%. Deaths from cardiovascular disease, diabetes, cancer, and many other illnesses are among the highest per capita in the country.
The high rates of poverty contribute to the high cervical cancer mortality, health experts said. About 19% of Mississippians — nearly 1 in 5 — live in poverty, while nationally it is about 13%.
“If I had to pinpoint what that’s from, it’s from lack of education,” said Ridgway, referring to a lack of knowledge about regular cervical cancer screening, which the U.S. Preventive Services Task Force recommends every three years for women 21 to 65.
But it likely goes far beyond that, many health experts said. Doctors may be less likely to stress preventive care to less educated women and women of color, studies suggest.
“There’s a big difference in the quality of care,” said Rajesh Balkrishnan, a professor of public health at the University of Virginia who has extensively studied oncology care in Appalachia and other underserved areas.
In her case, Jones said, she could not get her doctor’s office to return her calls in a timely manner. She was concerned about her symptoms.
“I felt I wasn’t listened to. I called her more than she called me,” Jones said of her doctor. “I was going to my appointments, and I was ignored.”
And getting access to any care — let alone quality, culturally competent care from providers who acknowledge a patient’s heritage, beliefs, and values during treatment — may be difficult.
Most of the state’s 82 counties are rural. The average travel distance to a grocery store is 30 miles, and half the population lives in a county that is considered medically underserved, said Letitia Thompson, a vice president in Mississippi for the American Cancer Society.
Low-income rural residents often lack reliable transportation, she said, and even if they own a vehicle, they lack gas money. They often can’t find — or pay for — someone to take care of their children so they can go to the doctor. Women with low-paying jobs often lack the time to drive to a clinic in a distant town, or the ability to take off from work without losing pay.
“Women who work and take care of children often have a huge burden of responsibility,” Ridgway said. “They don’t have time or the money.”
Many also don’t have insurance. While the Affordable Care Act has lowered the uninsured rate in Mississippi, an estimated additional 88,000 Mississippians could have coverage through Medicaid if the state expanded eligibility for the federal-state insurance program for low-income Americans. But the state is one of 10 that have not agreed to expand coverage to more adults.
Mississippi Gov. Tate Reeves, a Republican up for reelection this year, is opposed to expansion. His Democratic challenger, Brandon Presley, a second cousin of the music legend Elvis, favors it. Polls show Presley lagging Reeves.
Without expansion of Medicaid, people who have low incomes are often left to decide between forgoing insurance and purchasing a policy through the Affordable Care Act marketplace if they cannot get insurance through employment. Even if they qualify for subsidized marketplace plans, they may face high deductibles or copayments for visits, health experts said. That often means going to the doctor only when sick. Preventive care becomes a luxury.
“You save your health care dollars for when you are sick or your kids are sick,” said Thompson, of the American Cancer Society.
But regular medical care can make all the difference with cervical cancer. Pap tests have long helped detect abnormal cervical cells that could turn malignant. Brawley said the test is “one of the best” cancer screening tests because of its accuracy.
In 2006, vaccines to prevent cervical cancer were first approved by the FDA. The vaccines guard against the common sexually transmitted infection called the human papillomavirus, which causes nearly all cervical cancers. The HPV vaccine is most effective when administered before a person has become sexually active; the federal recommendation is to get the shots by age 12.
Only a handful of places in the U.S. — including Hawaii, Rhode Island, Virginia, Puerto Rico, and the District of Columbia — require the vaccines to attend school. California has pending legislation that initially would have required that middle schoolers get the shots, but the bill has since been watered down to recommend them instead.
Mississippi does not require the vaccine, and the state has had the lowest share of fully vaccinated teens by a large margin for years. Fewer than 39% of teens there were up to date on HPV vaccination as of 2022, according to the CDC, compared with an estimated 63% nationally.
Thompson said she thinks many parents are hesitant to have their children vaccinated because they believe it would encourage sexual activity.
“This is an anti-cancer vaccine,” Thompson said.
Krista Guynes, director of the women’s health program at the Mississippi State Department of Health, said the state has several efforts underway to better inform women about the need for screening. It also has clinics for uninsured women. In partnership with the National Cancer Institute and University of Mississippi Medical Center, she said, the health department is conducting a study to evaluate risk and look for new biomarkers in women undergoing screening for cervical cancer.
As for Jones, she considers herself lucky to have survived stage 3 cancer.
“I would just like to say to every woman, ‘Get the vaccine.’ The vaccine will make the difference, so they won’t have to be told, ‘I’m sorry, you have cancer.’”
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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Exclusive: CMS Study Sabotages Efforts to Bolster Nursing Home Staffing, Advocates Say
The Biden administration last year promised to establish minimum staffing levels for the nation’s roughly 15,000 nursing homes. It was the centerpiece of an agenda to overhaul an industry the government said was rife with substandard care and failures to follow federal quality rules.
But a research study the Centers for Medicare & Medicaid Services commissioned to identify the appropriate level of staffing made no specific recommendations and analyzed only staffing levels lower than what the previous major federal evaluation had considered best, according to a copy of the study reviewed Monday by KFF Health News. Instead, the new study said there was no single staffing level that would guarantee quality care, although the report estimated that higher staffing levels would lead to fewer hospitalizations and emergency room visits, faster care, and fewer failures to provide care.
Patient advocates said the report was the latest sign that the administration would fall short of its pledge to establish robust staffing levels to protect the 1.2 million Americans in skilled nursing facilities. Already, the administration is six months behind its self-imposed deadline of February to propose new rules. Those proposals, which have not been released, have been under evaluation since May by the Office of Management and Budget. The study, dated June 2023, has not been formally released either, but a copy was posted on the CMS website. It was taken down shortly after KFF Health News published this article.
“It’s honestly heartbreaking,” said Richard Mollot, executive director of the Long Term Care Community Coalition, a nonprofit that advocates for nursing home patients in New York state. “I just don’t see how this doesn’t ultimately put more residents at risk of neglect and abuse. Putting the government’s imprimatur on a standard that is patently unsafe is going to make it much more difficult for surveyors to hold facilities accountable for the harm caused by understaffing nursing homes.”
For months, the nursing home industry has been lobbying strenuously against a uniform ratio of patients to nurses and aides. “What is clear as you look across the country is every nursing home is unique and a one-size-fits-all approach does not work,” said Holly Harmon, senior vice president of quality, regulatory, and clinical services at the American Health Care Association, an industry trade group.
Nursing home groups have emphasized the widespread difficulty in finding workers willing to fill existing certified nursing assistant jobs, which are often grueling and pay less than what workers can make at retail stores. Homes say their licensed nurses are often drawn away by other jobs, such as better-paying hospital positions. “The workforce challenges are real,” said Katie Smith Sloan, president and CEO of LeadingAge, an association that represents nonprofit nursing homes.
The industry has also argued that if the government wants it to hire more workers it needs to increase the payments it makes through state Medicaid programs, which are the largest payor for nursing home care. Advocates and some researchers have argued that nursing homes, particularly for-profit ones, can afford to pay employees more and hire additional staff if they forsake some of the profits they give investors.
“Certainly, facilities haven’t put all the dollars back into direct care over the years,” said David Grabowski, a professor of health care policy at Harvard Medical School. “But for certain facilities, it’s going to be a big lift to pay for” higher staffing levels, he said in an interview last week.
In a written statement to KFF Health News, Jonathan Blum, CMS’ principal deputy administrator and chief operating officer, said the study had been posted in error. “CMS is committed to holding nursing homes accountable for protecting the health and safety of all residents, and adequate staffing is critical to this effort,” he said. “CMS’s proposal is being developed using a rigorous process that draws on a wide range of source information, including extensive input from residents and their families, workers, administrators, experts, and other stakeholders. Our focus is on advancing implementable solutions that promote safe, quality care for residents.” Blum’s statement called the study a “draft,” although nothing in the 478-page study indicated it was preliminary.
The study has been widely anticipated, both because of the central role the administration said it would play in its policy and because the last major CMS study, conducted in 2001, had concluded that nursing home care improves as staffing increases up to the level of about one worker for every six residents. The formal metric for that staffing level was 4.1 staff hours per resident per day, which is calculated by dividing the number of total hours worked by nurses and aides on duty daily by the number of residents present each day.
CMS never adopted that staffing ratio and instead gave each nursing home discretion to determine a reasonable staffing level. Regulators rarely cite nursing homes for insufficient staffing, even though independent researchers have concluded low staffing is the root of many nursing home injuries. Too few nurse aides, for instance, often means immobile residents are not repositioned in bed, causing bedsores that can lead to infection. Low staffing also is often responsible for indignities residents face, such as being left in soiled bedsheets for hours.
The new research was conducted by Abt Associates, a regular contractor for CMS that also performed the 2001 study. But the report, in an implicit disagreement with its predecessor, concluded there was “no obvious plateau at which quality and safety are maximized or ‘cliff’ below which quality and safety steeply decline.” Abt referred questions about the study to CMS.
The study evaluated four minimum staffing levels, all of which were below the 4.1 daily staff hours that the prior study had identified as ideal. The highest was 3.88 daily staff hours. At that level, the study estimated 0.6% of residents would get delayed care and 0.002% would not get needed care. It also said that staffing level would result in 12,100 fewer hospitalizations of Medicare residents and 14,800 fewer emergency room visits. The report said three-quarters of nursing homes would need to add staff to meet that level and that it would cost $5.3 billion extra each year.
The lowest staffing level the report analyzed was 3.3 daily staffing hours. At that level, the report said, 3.3% of residents would get delayed care and 0.04% would not get needed care. That level would reduce hospitalizations of Medicare residents by 5,800 and lead to 4,500 fewer emergency room visits. More than half of nursing homes would have to increase staff levels to meet that ratio, the report said, and it would cost $1.5 billion more each year.
Charlene Harrington, a professor emeritus of nursing at the University of California-San Francisco, said CMS “sabotaged” the push for sufficiently high staffing through the instructions it gave its contractor. “Every threshold they looked at was below 4.1,” she said. “How can that possibly be a decent study? It’s just unacceptable.”
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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2 years 1 month ago
Aging, Health Industry, Multimedia, Biden Administration, CMS, Nursing Homes, Study
A Peek at Big Pharma’s Playbook That Leaves Many Americans Unable to Afford Their Drugs
America’s pharmaceutical giants are suing this summer to block the federal government’s first effort at drug price regulation.
America’s pharmaceutical giants are suing this summer to block the federal government’s first effort at drug price regulation.
Last year’s Inflation Reduction Act included what on its face seems a modest proposal: The federal government would for the first time be empowered to negotiate prices Medicare pays for drugs — but only for 10 very expensive medicines beginning in 2026 (an additional 15 in 2027 and 2028, with more added in later years). Another provision would require manufacturers to pay rebates to Medicare for drug prices that increased faster than inflation.
Those provisions alone could reduce the federal deficit by $237 billion over 10 years, the Congressional Budget Office has calculated. That enormous savings would come from tamping down drug prices, which are costing an average of 3.44 times — sometimes 10 times — what the same brand-name drugs cost in other developed countries, where governments already negotiate prices.
These small steps were an attempt to rein in the only significant type of Medicare health spending — the cost of prescription drugs — that has not been controlled or limited by the government. But they were a call to arms for the pharmaceutical industry in a battle it assumed it had won: When Congress passed the Medicare prescription drug coverage benefit (Part D) in 2003, intense industry lobbying resulted in a last-minute insertion prohibiting Medicare from negotiating those prices.
Without any guardrails, prices for some existing drugs have soared, even as they have fallen sharply in other countries. New drugs — some with minimal benefit — have enormous price tags, buttressed by lobbying and marketing.
AZT, the first drug to successfully treat HIV/AIDS, was labeled “the most expensive drug in history” in the late 1980s. Its $8,000-a-year cost was derided as “inhuman” in a New York Times op-ed. Now, scores of drugs, many with much less benefit, cost more than $50,000 a year. Ten drugs, mostly used to treat rare diseases, cost over $700,000 annually.
Pharmaceutical manufacturers say high U.S. prices support research and development and point out that Americans tend to get new treatments first. But recent research has shown that the price of a drug is related neither to the amount of research and development required to bring it to market nor its therapeutic value.
And selling drugs first in the U.S. is a good business strategy. By introducing a drug in a developed country with limited scrutiny on price, manufacturers can set the bar high for negotiating with other nations.
Here are just a few of the many examples of drug pricing practices that have driven consumers to demand change.
Exhibit A is Humira, the best-selling drug in history, earning AbbVie $200 billion over two decades. Effective in the treatment of various autoimmune diseases, its core patent — the one on the biologic itself — expired in 2016. But for business purposes, the “controlling patent,” the last to expire, is far more important since it allows an ongoing monopoly.
AbbVie blanketed Humira with 165 peripheral patents, covering things like a manufacturing step or slightly new formulation, creating a so-called patent thicket, making it challenging for generics makers to make lower-cost copycats. (When they threatened to do so, AbbVie often offered them valuable deals not to enter the market.) Meanwhile, it continued to raise the price of the drug, most recently to $88,000 a year. This year, Humira-like generics (called biosimilars for its type of molecule) are entering the U.S. market; they have been available for a fraction of the price in Europe for five years.
Or take Revlimid, a drug by Celgene (now part of Bristol Myers Squibb), which treats multiple myeloma. It won FDA approval to treat that previously deadly disease in 2006 at about $4,500 a month; today it retails at triple that. Why? The company’s CEO explained price hikes were simply a “legitimate opportunity” to improve financial “performance.”
Since it must be taken for life to keep that cancer in check, patients who want to live (or their insurers) have had no choice but to pay. Though Revlimid’s patent protection ran out in 2022, Celgene avoided meaningful price-cutting competition by offering generic competitors “volume-limited licenses” to its patents so long as they agreed to initially produce a small share of the drug’s $12 billion monopoly market.
Par Pharmaceutical, another drugmaker, maneuvered to create a blockbuster market out of a centuries-old drug, isoproterenol, through a well-meaning FDA program that gave companies a three-year monopoly in exchange for performing formal testing on drugs in use before the agency was formed.
During those three years, Par wrapped its branded product, Vasostrict, used to maintain blood pressure in critically ill patients, with patents — including one on the compound’s pH level — extending its monopoly eight additional years. Par raised the price by 5,400% between 2010 and 2020. When the covid-19 pandemic filled intensive care units with severely ill patients, that hike cost Americans $600 million to $900 million in the first year.
And then there is AZT and its successors, which offer a full life to HIV-positive people. Pills today contain a combination of two or three medicines, the vast majority including one similar to AZT, tenofovir, made by Gilead Sciences. The individual medicines are old, off-patent. Why then do these combination pills, taken for life, sometimes cost $4,000 monthly?
It’s partly because many manufacturers of the combination pills have agreements with Gilead that they will use its expensive branded version of tenofovir in exchange for various business favors. Peter Staley, an activist with HIV, has been spearheading a class-action suit against Gilead, alleging “collusion.” The negotiated price for these pills is hundreds of dollars a month in the United Kingdom, not the thousands charged in the U.S.
Faced with such tactics, 8 in 10 Americans now support drug price negotiation, giving Congress and the Biden administration the impetus to act and to resist Big Pharma’s legal challenges, which many legal experts view as a desperate attempt to stave off the inevitable.
“I don’t think they have a good legal case,” said Aaron Kesselheim, who studies drug pricing at Harvard Medical School. “But it can delay things if they can find a judge to issue an injunction.” And even a year’s delay could translate into big money.
Yes, American patients are lucky to have first access to innovative drugs. And, sadly, patients in countries that refuse to pay up once in a while go without the latest treatment. But more sadly, polling shows, large numbers of Americans are forgoing prescribed medicines because they can’t afford them.
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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2 years 2 months ago
Health Care Costs, Health Care Reform, Health Industry, Pharmaceuticals, Drug Costs, Legislation, Prescription Drugs
Your Exorbitant Medical Bill, Brought to You by the Latest Hospital Merger
When Mark Finney moved to southwestern Virginia with his young family a decade ago, there were different hospital systems and a range of independent doctors to choose from.
But when his knee started aching in late 2020, he discovered that Ballad Health was the only game in town: He went to his longtime primary care doctor, now employed by Ballad, who sent him to an orthopedist’s office owned by Ballad. That doctor sent him to get an X-ray at a Ballad-owned facility and then he was referred to a physical therapy center called Mountain States Rehab, which was now owned by Ballad as well.
When the price of his physical therapy doubled overnight — to nearly $200 for approximately 30 minutes — there was nowhere else to go, because Ballad Health effectively had a monopoly on care in 29 counties of the Appalachian Highlands in northeastern Tennessee, southwestern Virginia, northwestern North Carolina, and southeastern Kentucky.
“I was stuck,” said Finney, a college professor. “My wife now drives 50 miles to see a doctor that’s not part of Ballad, and I don’t have a doctor anymore.”
Biden administration regulators have unleashed a blizzard of antitrust activity and have broadened the definition of the types of unfair competition they can target. Regulators blocked a merger between publishing giants Penguin Random House and Simon & Schuster, saying it could have decreased author compensation and diminished the “diversity of our stories and ideas.” Regulators have filed suit to block JetBlue’s acquisition of Spirit Airlines on the grounds that the existence of the lower-cost Spirit kept fare increases by other carriers in check.
But while hospital mergers and creeping consolidation have arguably proved more traumatic and costly for countless Americans like Finney, they may prove harder to curtail.
After decades of unchecked mergers, health care is the land of giants, with one or two huge medical systems monopolizing care top to bottom in many cities, states, and even whole regions of the country. Reams of economic research show that the level of hospital consolidation today — 75% of markets are now considered highly consolidated — decreases patient choice, impedes innovation, erodes quality, and raises prices.
Ballad has generously contributed to performing arts and athletic centers as well as school bands. But, critics say, it has skimped on health care — closing intensive care units and reducing the number of nurses per ward — and demanded higher prices from insurers and patients. It has a habit of suing patients for unpaid bills. Its chief executive was paid about $4 million last year.
For many years in the past century the Federal Trade Commission made little effort to go to court to block hospital mergers because judges tended to rule that as nonprofit entities, hospitals were unlikely to use monopoly power to pursue abusive business practices. How wrong they were.
In 2021 President Joe Biden ordered the FTC to be more aggressive about hospital mergers and even to review those that had already occurred. But it is unclear if the agency has the tools to do much. “Regulators are 10 to 15 years behind and don’t have the resources — so that’s where we are,” said James Capretta, a senior fellow at the American Enterprise Institute.
The normal procedure for blocking proposed hospital mergers is cumbersome: often lengthy analysis to prove the effects on a particular market, warning letters, negotiations, and finally challenges in court.
With its staff of about 40 focused on hospitals, the FTC has prevented seven mergers in the past two years, said Rahul Rao, deputy director of the agency’s Bureau of Competition, who called the problem a “top priority.” But there were 53 hospital mergers and acquisitions in 2022 and have been more than 90 per year in recent years.
“It’s really hard to show that a prospective transaction is anti-competitive,” said Leemore Dafny, a Harvard economist who worked at the FTC about a decade ago. “I saw how hard it was for government to prove its case, even when it seemed obvious.”
In one market, two hospitals might be enough to ensure competition; in another, four. Even if the price goes up, that may not be considered anti-competitive if quality improves.
The FTC has an even harder time evaluating the vertical merger, which is far more common: when a big hospital system buys up a much smaller hospital or some doctors’ practices and independent surgery or radiology centers — or when it merges with a local insurer.
Many such mergers are never vetted at all, since transactions under $111 million do not have to be reported to the agency. “It’s a visibility problem,” Rao said. “We hear about it from news reports or from a state attorney general” who is more in touch with activity on the ground. Many of today’s behemoth systems — such as Northwell Health in New York, Sutter in California, and the University of Pittsburgh Medical Center in Pennsylvania — grew often by buying one small hospital, physician practice, or surgery center at a time, below the threshold where they would attract federal regulators’ scrutiny or merit use of their limited resources.
When hospitals buy doctors’ practices, research shows, rates for visits tend to go up as they did for Finney. Some purchases are essentially catch-and-kill operations: Buy a nearby independent outpatient cardiac center, for example, to eliminate cheaper competition.
As hospital systems have grown — and become major employers — their sway with state legislatures has created obstacles to curbing consolidation. Sympathetic state lawmakers have passed so-called Certificate of Public Advantage laws to shield hospitals from both federal and state antitrust action. Such certificates in Tennessee and Virginia allowed the formation of Ballad from two competing systems in 2018, over the FTC’s objections. The North Carolina Senate recently gave the UNC Health system the green light to expand, regardless of regulators’ thoughts.
The newest challenge is how to handle the growing number of cross-market mergers, where huge health systems in different parts of a state or of the country join forces. While the hospitals are not competing for the same patients, emerging research shows that these moves result in higher prices, in part because the increased negotiating clout of the enormous health system forces companies that cover employees in both markets to pay more in what previously was the cheaper region.
There are attempts and proposals to reinject a modicum of competition or restraint into the health system: The FTC has sought to ban noncompete clauses in job contracts that prevent doctors and nurses from moving from one hospital to another within a certain time, for example.
But many economists on both the left and the right have concluded that, at this point, meaningful competition may be difficult to restore in many markets. Barak Richman, a professor of law and business administration at Duke University, said, “It’s depressing for economists who live and breathe by competition to say maybe we just need price regulation.”
Indeed, a number of states — red and blue — are now gingerly floating moves to directly rein in prices. This year the Indiana Legislature, for example, banned hospitals from charging facility fees for visits outside of the hospital. The lawmakers even considered fining hospitals whose prices were more than 260% of the Medicare rate — though they deferred that move for two years in the hope that the threat would encourage better behavior.
With the FTC becoming more aggressive and legislatures considering such measures, perhaps hospital systems will heed the warnings and behave more like the care providers they’re meant to be and less like monopoly businesses.
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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2 years 2 months ago
Cost and Quality, Health Care Costs, Health Industry, Hospitals, Legislation
KFF Health News' 'What the Health?': On Abortion Rights, Ohio Is the New Kansas
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.
Ohio voters — in a rare August election — turned out in unexpectedly high numbers to defeat a ballot measure that would have made it harder to pass an abortion-rights constitutional amendment on the ballot in November. The election was almost a year to the day after Kansas voters also stunned observers by supporting abortion rights in a ballot measure.
Meanwhile, the percentage of Americans without health insurance dropped to an all-time low of 7.7% in early 2023, reported the Department of Health and Human Services. But that’s not likely to continue, as states boot from the Medicaid program millions of people who received coverage under special eligibility rules during the pandemic.
This week’s panelists are Julie Rovner of KFF Health News, Emmarie Huetteman of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Rachel Roubein of The Washington Post.
Panelists
Emmarie Huetteman
KFF Health News
Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Rachel Roubein
The Washington Post
Among the takeaways from this week’s episode:
- It should not have come as much of a surprise that Ohio voters sided with abortion-rights advocates. Abortion rights so far have prevailed in every state that has considered a related ballot measure since the Supreme Court overturned Roe v. Wade, including in politically conservative states like Kentucky and Montana.
- Moderate Republicans and independents joined Democrats in defeating the Ohio ballot question. Opponents of the measure — which would have increased the threshold of votes needed to approve state constitutional amendments to 60% from a simple majority — had not only cited its ramifications for the upcoming vote on statewide abortion access, but also for other issues, like raising the minimum wage.
- A Texas case about exceptions under the state’s abortion ban awaits the input of the state’s Supreme Court. But the painful personal experiences shared by the plaintiffs — notable in part because such private stories were once scarce in public discourse — pressed abortion opponents to address the consequences for women, not fetuses.
- The uninsured rate hit a record low earlier this year, a milestone that has since been washed away by states’ efforts to strip newly ineligible Medicaid beneficiaries from their rolls as the covid-19 public health emergency ended.
- The promise of diabetes drugs to assist in weight loss has attracted plenty of attention, yet with their high price tags and coverage issues, one thorny obstacle to access remains: How could we, individually and as a society, afford this?
- Lawmakers are asking more questions about the nature of nonprofit, or tax-exempt, hospitals and the care they provide to their communities. But they still face an uphill battle in challenging the powerful hospital industry.
Also this week, Rovner interviews Kate McEvoy, executive director of the National Association of Medicaid Directors, about how the “Medicaid unwinding” is going as millions have their eligibility for coverage rechecked.
Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: KFF Health News’ “How the Texas Trial Changed the Story of Abortion Rights in America,” by Sarah Varney.
Joanne Kenen: Fox News’ “Male Health Care Leaders Complete ‘Simulated Breastfeeding Challenge’ at Texas Hospital: ‘Huge Eye-Opener’,” by Melissa Rudy.
Rachel Roubein: Stat’s “From Windows to Wall Art, Hospitals Use Virtual Reality to Design More Inclusive Rooms for Kids,” by Mohana Ravindranath.
Emmarie Huetteman: KFF Health News’ “The NIH Ices a Research Project. Is It Self-Censorship?” by Darius Tahir.
Also mentioned in this week’s episode:
- Politico’s “Abortion Rights Won Big in Ohio. Here’s Why It Wasn’t Particularly Close,” by Madison Fernandez, Alice Miranda Ollstein, and Zach Montellaro.
- KFF Health News’ “Seeking Medicare Coverage for Weight Loss Drugs, Pharma Giant Courts Black Influencers,” by Rachana Pradhan.
- Stat’s “Alarmed by Popularity of Ozempic and Wegovy, Insurers Wage Multi-Front Battle,” by Elaine Chen.
click to open the transcript
Transcript: On Abortion Rights, Ohio Is the New Kansas
KFF Health News’ ‘What the Health?’Episode Title: On Abortion Rights, Ohio Is the New KansasEpisode Number: 309Published: Aug. 10, 2023
[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]
Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping a day early this week, on Wednesday, Aug. 9, at 3:30 p.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hey, everybody.
Rovner: Rachel Roubein of The Washington Post.
Rachel Roubein: Hi, everybody.
Rovner: And my colleague and editor here at KFF Health News Emmarie Huetteman.
Emmarie Huetteman: Hey, everyone. Glad to be here.
Rovner: So later in this episode, we’ll have my interview with Kate McEvoy, executive director of the National Association of Medicaid Directors. She’s got her pulse on how that big post-public health emergency “Medicaid unwinding” is going. And she’ll share some of that with us. But first, this week’s news. I guess the biggest news of the week is out of Ohio, which, in almost a rerun of what happened in Kansas almost exactly a year ago, voters soundly defeated a ballot issue that would have made it harder for other voters this fall to reverse the legislature’s strict abortion ban. If you’re having trouble following that, so did they in Ohio. [laughs] This time, the fact that the abortion rights side won wasn’t as much of a surprise because every statewide abortion ballot question has gone for the abortion rights side since Roe v. Wade was overturned last year. What do we take away from Ohio? Other than it looked a lot like … the split looked a lot like Kansas. It was almost 60-40.
Kenen: It shows that there’s a coalition around this issue that is bigger than Democrat or Republican. Ohio was the classic swing state that has turned into a conservative Republican-voting state — not on this issue. This was clearly independents, moderate Republicans joined Democrats to … 60-40, roughly, is a pretty big win. Yes, we’ve seen it in other states. It’s still a pretty big win.
Roubein: I agree. And I think one of my colleagues, Patrick Marley, and I spent some time just driving around and traveling Ohio in July. And one of the things that we did find is that — this ballot measure to increase the threshold for constitutional amendments is 60% — it had in some, in many, ways turned into a proxy war over abortion. But, in some ways, both sides also didn’t talk about abortion when they were, you know, canvassing different voters. You know, they use different tools in the toolbox. I was following around someone from Ohio Right to Life and, you know, he very much said, “Abortion is the major issue to me.” But, you know, they tried to kind of bring together the side that supported this. Other issues like legalizing marijuana and raising the minimum wage, and, you know, the abortion rights side was very much a part of, you know, the opposition here. But when some canvassers went out — my colleague Patrick had traveled and followed some, and some, you know, kind of focused on other issues like, you know, voters having a voice in policy and keeping a simple majority rule.
Rovner: Yeah, I think it’s important — for those who have not been following this as closely as we have — what the ballot measure was was to make future ballot measures — and they said they were not going to have them in August anymore, which, this was the last one — in order to amend the constitution by referendum, you would need a 60% majority rather than a 50% majority. And just coincidentally, there is an abortion ballot measure on Ohio’s ballot for November, and it’s polling at about 58%. But, yes, this would have applied to everything, and it was defeated.
Kenen: And it’s part of a larger trend. It began before the overturning of Roe v. Wade. Over the last couple of years, you’ve seen conservative states move to tighten these rules for ballot initiatives. And that’s because more liberal positions have been winning. I mean, Medicaid, the Medicaid expansion on the ballot, has won, and won big. Only one was even close …
Rovner: In very red states!
Kenen: They often won very big in a number of very, very conservative states, places like Idaho and Nebraska. So, you know, there’s always been … the conventional wisdom is that, you know, the political parties are more extreme than many voters, that the Democratic Party is for the left and the Republican Party is for the right. And there are a lot of people who identify with one party or the other but aren’t … who are more moderate or, in this case, more liberal on Medicaid. And Medicaid … what was it, seven states? I think it’s seven. Seven really conservative states. And then the abortion has won in every single state. And there’s a little bit of conversation and it’s … very early. And I don’t know if it’s going to go anywhere, but if I’ve heard it and written a bit about it, conservative lawmakers have heard about it, too, which is there are groups interested in trying to get some gun safety initiatives on ballots. So that’s complicated. And it may not happen. But they’re seeing, I mean, that’s the classic example of both a criminal justice and a public health issue — so we can talk about it — a classic example where the country is much more in the center.
Rovner: Well, let us move to Texas, because that’s where we always end up when we talk about abortion. You may remember that lawsuit where several women who nearly died from pregnancy complications sued the state to clarify when medical personnel are able to intercede without being subjected to fines and/or jail sentences. Well, the women won, at least for a couple of days. A Texas district judge who heard the case ruled in their favor, temporarily blocking the Texas ban for women with pregnancy complications. But then the state appealed, and a Texas appeals court blocked the lower-court judge’s blocking of part of the ban. If you didn’t follow that, it just means that legally nothing has changed in Texas. And now the case goes to the Texas Supreme Court, which has a conservative majority. So we pretty much know what’s going to happen. But whether these women ultimately win or lose their case may not be the most important thing. And, to explain why I’m going to do my extra credit early this week. It’s by my KFF Health News colleague Sarah Varney. It’s called “How the Texas Trial Changed the Story of Abortion Rights in America.” She writes that this trial was particularly significant because it put abortion foes on the defensive by graphically depicting harm to women of abortion bans — rather than to fetuses. And it’s also about the power of people publicly telling their stories. I’ve done a lot of stories over the years about women whose very wanted pregnancies went very wrong, very late. And, I have to tell you, it’s been hard to find these women. And when you find them, it’s been really hard to get them to talk to a journalist. So, the fact that we’re seeing more and more people actually come out publicly, you know, may do for this issue what, you know, perhaps what gay rights, you know, what people coming out as gay did for gay marriage? I don’t know. What do you guys think?
Kenen: Well, I think these stories have been really compelling, but they’re also, they’re the most dramatic and maybe easiest to push back. But it’s, you know, there’s a whole lot of other reasons women want abortions. And the focus — and it’s life and death, so the focus, quite rightfully, has to be on these really extreme cases. But that’s not … it’s still in some ways shifting attention from the larger political discussion about choice and rights. But, clearly, some of these states, we’ve seen so many stories of women who, their lives are at stake, their doctors know it, and they just don’t think they have the legal power; they’re afraid of the consequences if they’re second-guessed. There are tremendous financial and imprisonment [risks] for a doctor who is deemed to have done an unnecessary abortion. And this idea that’s taken hold … among some conservatives is that there’s never a need for a medical abortion. And that’s just not true.
Rovner: And yet, I mean, what this trial and a lot of things in Sarah’s piece too point out is that that line between miscarriage and abortion is really kind of fuzzy in a lot of cases. You know, if you go to the hospital with a miscarriage and they’re going to say, “Well, did you initiate this miscarriage?” And we’ve seen women thrown in jail before for losing pregnancies, with them saying, “You know, you threw yourself down the stairs to end this pregnancy.” That actually happened, I think it was in Indiana. So this is —
Kenen: And miscarriage is very common.
Rovner: That was what I was saying.
Kenen: Early miscarriage is very common. Very, very common.
Huetteman: One of the things that’s so striking about the past year, since Dobbs overturned Roe v. Wade ,is that we’ve seen this kind of national education about what pregnancy is and how dangerous it can be and how care needs to really be flexible to meet those sorts of challenges. And this actually got me thinking about something that another familiar voice on this podcast, Alice Miranda Ollstein, and some colleagues wrote this morning about the Ohio outcome, which is they pointed out that the anti-abortion movement really hasn’t evolved in terms of the arguments that they’re making in the past year about why abortion should continue to be less and less available. Meanwhile, we’ve got these, like, really incredible, really emotional, moving stories from women who have experienced this firsthand. And that’s a hard message to overcome when you’re trying to reach voters in particular.
Rovner: And it’s interesting; both sides like to take — you know, they all go to the hardest cases. So, for years and years, the anti-abortion side has, you know, has gone to the hardest cases. And that’s why they talk about abortion in the ninth month up till birth, which isn’t a thing, but they talk about it. And you know, now the abortion rights side has some hard cases now that abortions are harder to get. Well, while we are on the subject of Texas lawsuits, States Newsroom — and thank you for sending this my way, Joanne — has a story reporting that the publisher of the scientific paper that both the lower court judge and the appeals court judges used to conclude that the abortion drug mifepristone causes frequent complications — it does not — is being reviewed for potential scientific misconduct. The paper comes from the Charlotte Lozier Institute, which is the research arm of the anti-abortion group the Susan B. Anthony List. Sage, which is the publisher of the journal that the paper appeared in, has posted something called an expression of concern, saying that the publisher and editor, quote, “were alerted to potential issues regarding the representation of data in the article and author conflicts of interest. SAGE has contacted the authors of this article and an investigation is underway.” This was sort of a whistleblower by a pharmacist who looked at the way the data in this paper was put together and says, “No, that’s really very misleading.” I don’t think I’ve ever seen this, though; I’ve never seen a scientific paper that’s now being questioned for its political bent, a peer-reviewed scientific paper. I mean, this could change a lot of things, couldn’t it?
Kenen: Well, not if people decide that they still think it’s true. I mean, look at — you know, the vaccine autism paper was retracted. That wasn’t initially political. It’s become more political over the years; it wasn’t political at the time. That was retracted. And people have been jumping up and down screaming, “It was retracted! It was retracted!” And, you know, millions of people still believe it. So, I mean, legally, I’m not sure how much it changes. I mean, I thought we had all heard that there were flaws in this study. This article was good because I hadn’t been aware of how deeply flawed and in all the many ways it was flawed. And also the whistleblower yarn was interesting. I’m not sure how much it changes anything.
Rovner: Well, I’m thinking not in terms of this case. And by the way, I think we didn’t say this, that the study was of emergency room visits by women who’d had either surgical or medical abortions. And the contention was that medical abortions were more dangerous than surgical abortions because more women ended up in the emergency room. But as several people have pointed out, more people ended up in the emergency room after medical abortions because there have been so many more medical abortions over the years. I mean, you don’t actually have to be a data scientist to see some of the problems.
Kenen: Right. And some of them also weren’t that — really, were nervous, and they didn’t know what was normal and they went to the ER because they were scared and they really were safe. They were not — they didn’t need — you know, they just weren’t sure how much pain and discomfort or bleeding you’re supposed to have. And they went and they were reassured and were sent home. So it’s not even that they really had a medical emergency or that they were harmed.
Rovner: Or that they had a complication.
Kenen: Right. There were many flaws pointed out with this research.
Rovner: But my broader question is, I mean, if people are going to start questioning the politics of scientific papers, I mean, I could see the other side going after this.
Kenen: Well, there’s climate science, too, that’s bad. I mean, I don’t think this is actually unique. I think it’s egregious. But there were studies minimizing the risk of smoking, which was also a political business, commercial. Climate is certainly political. I mean, I think this is sort of the most politicized and most acute example, but I don’t think it’s the only one.
Roubein: And I think, Julie, as you’d mentioned, I think when [U.S. District Judge] Matthew Kacsmaryk in Texas came down with his decision — you know, for instance, there are media outlets — that my colleagues at the Post did a story just kind of unpacking some of the kind of flaws and some of the studies that were used to make, you know, a court decision.
Rovner: Yeah, to give the judge what he assumes to be evidence that this is a dangerous drug. So it’s — yeah.
Kenen: Which he came in believing, we know, from the profiles of him and his background.
Rovner: Right. All right, well, let us move on. The official Census Bureau estimate of how many people lack health insurance won’t be out until next month. But the Department of Health and Human Services is out with a report based on that other big federal population survey that shows the uninsured rate early this year was at its lowest level since records started being kept, which I think was in the 1980s: 7.7%. Now, that’s clearly going to be the high point for the fewest number of people uninsured, at least for a while, because clearly not all of the millions of people who are losing or about to lose their Medicaid coverage are going to end up with other insurance. But I remember — Joanne, you will, too — when the rate was closer to 18% … was a huge news story, and the thing that triggered the whole health reform debate in the first place. I’m surprised that there’s been so little attention paid to this.
Kenen: Because, you know … [unintelligible] … it’s so yesterday. And also, as you alluded to, you know, we’re in the middle of the Medicaid unwinding. So the numbers are going up again now. And we don’t know. We know that it’s a couple of million people. I think 3 million might be the last —
Rovner: I think it’s 4 [million], it’s up to 4.
Kenen: Four, OK. And some of them will get covered again and some of them will find other sources of coverage. But right now, there’s an uptick, not a downtick.
Roubein: And I think when you look at just, like, estimates of what the insured and the uninsured rates would be in 2030, like, the CMS’ [Centers for Medicare & Medicaid Services] analysis, one of the other questions is, you know, whether the enhanced Obamacare subsidies continue past 2025. So there’s Medicaid and then there’s also some other kind of question marks and cliffs coming up on how and whether it will fluctuate.
Rovner: No, it’s worth watching. And remember, when the census numbers come out, those will be for 2022. Well, moving on, we have two stories this week looking at the potential cost of those breakthrough obesity drugs, but through two very different lenses. One is from my KFF Health News colleague Rachana Pradhan, details how the makers of the current “it” drug, Ozempic, which is Novo Nordisk, in an effort to get the votes to lift the Medicare payment ban on weight loss drugs, is quietly contributing large amounts of money to groups like the Congressional Black Caucus Foundation and the Congressional Hispanic Caucus Institute. It’s sort of a backdoor lobbying that’s pretty age-old, but that doesn’t mean it doesn’t work. The other story, by Elaine Chen at Stat, looks at how health insurers are pushing back hard against the off-label use of diabetes medications that also work to help people lose weight. They’re doing things like allowing the more expensive weight loss drugs only if people have tried and failed other methods or disallowing them if the other methods had been slightly successful. So, if you take a lesser drug and you lose enough weight, they won’t let you take the better drug because, look, you lost weight on the other drug. We’ve talked about this, obviously, before: These drugs, on the one hand, have the potential to make a lot of people both healthier and happier. There’s a study out this week that shows that Mounjaro, the Eli Lilly drug, actually reduces heart disease by 20%.
Kenen: In people who have heart disease.
Rovner: Right, in people who have heart disease.
Kenen: It’s not lowering everybody’s risk.
Rovner: But still, I mean, everybody’s — well, I mean, there are medical indications for using these drugs for weight loss. But if everybody who wants them could get them, it would literally break the bank. Nobody can afford to give everybody who’s eligible for these drugs these drugs. Is the winner here going to be the side with the most effective lobbying, or is that too cynical?
Huetteman: Isn’t that always the winner? Speaking of cynical.
Rovner: Yeah, in health care.
Kenen: Well, I mean, I also think there’s questions about, like, these drugs clearly are really wonderful for people who they were designed for; you don’t have to be on insulin. They’re having not just weight loss and diabetes. There are apparently cardiac and other — you know, these are probably really good drugs. But there are a lot of people who do not have diabetes or heart disease who want them because they want to lose 20 pounds. And some of them are being told you have to take it for the rest of your life. I mean, I just know this anecdotally, and I’m sure we all know it anecdotally.
Rovner: Right. It’s like statins.
Kenen: Yes.
Rovner: Or blood pressure medication. If you stop taking your blood pressure medication, your blood pressure goes back up.
Kenen: Right. So, I mean, should the goal for the weight loss be, “OK, this is going to help you take off that weight and then you’re going to have to maintain it through diet and exercise and healthy lifestyle,” blah, blah, blah, which is hard for people. We know that. Or are we putting healthy people on a really expensive drug that changes an awful lot of things about their body indefinitely? We don’t have safety data for lifelong use in otherwise healthy people. So, you know, I’m always a little worried because even the best clinical trial is small compared to the entire — it’s small and it’s time-limited. And maybe these drugs are going to turn out to be absolutely phenomenal and we’re going to all live another 20 healthy years. But maybe not, you know. Or maybe they’re going to be really great for a certain subpopulation, but, you know, we’re not going to want to put it in the water supply. So, I still think that there’s this sort of pell-mell rush. And I think it’s partly because there’s a lot of money at stake. And it’s also, like, most people who are overweight have tried to lose it, and it’s very difficult to lose and maintain weight. So, you know, people want an easier way to do it. And I think the other thing is right now it’s an injection. There are side effects for some people on discomfort. There probably will be an oral version, a pill, sometime fairly soon, which will open — you know, there are people who don’t want to take a shot who would take a pill. It also means you might be able to tell — I mean, I don’t know the science of the pills, but it would make sense to me that you could take a lower dose, you know, maybe ease into it without the side effects, or could you stay on it longer with fewer problems? I mean, we’re just the very beginning of this, but it’s a huge amount of money.
Rovner: Yeah. You could see — I mean, my big question, though, is why can’t we force the drugmakers to lower the price? That would, if not solve the problem, make it a lot better. I mean, really, we’re going to have to wait until there is generic competition?
Kenen: It’s not just this.
Rovner: Yeah.
Kenen: I mean, it’s all sorts of cancer treatments and it’s hepatitis treatments. And it’s, I mean, there’s a lot of expensive drugs out there. So, this one just has a lot of demand because it makes you skinny.
Rovner: Well, that was the thing. We went through this with the hepatitis C drugs, which were really super expensive. It’s much more like that.
Kenen: Well, they seemed super expensive at the time —
Rovner: Not so much anymore.
Kenen: — but maybe for a thousand dollars, in retrospect.
Rovner: All right. Well, let’s move on. So, speaking of powerful lobbies, let’s talk about hospitals. Iowa Republican Sen. Chuck Grassley and Massachusetts Democrat Elizabeth Warren — now, there is an unlikely couple — are among those asking the IRS to more carefully examine tax-exempt hospitals to make sure they’re actually benefiting the community in exchange for not paying taxes, which is supposed to be the deal. Now, Sen. Grassley has been on this particular hobbyhorse for many, many years, I think probably more than 20, but not much ever seems to come of this. I can’t tell you how many workshops I’ve been to on, you know, how to measure community benefits that tax-exempt hospitals are providing. Any inkling that this time is going to be any different?
Roubein: Well, hospitals don’t tend to be sort of the losers. They try and kind of frame themselves as, like, “We’re your sort of friendly neighborhood hospital,” and every — I mean, every congressman, most congressmen have, you know, hospitals in their district. So they they get lobbied a lot, though, you know — I mean, this is a different issue, but particularly on the House side, hospitals are facing site-neutral payments, which if that actually went through Congress would be a loss. So yeah, but lawmakers have found it in general hard to take on the hospital industry.
Rovner: Yeah, very much so.
Kenen: Yeah. I mean, I think that we think of nonprofits and for-profits as, they’re different, but they’re not as different as we think they are, in that, you know, nonprofits are getting a tax break and they have to reinvest their profits. But it doesn’t mean they’re not making a lot of money. Some of them are. I mean, some of them have, you know, we’ve all walked into fancy nonprofits with, you know, fancy art and marble floors and so on and so forth. And we’ve all been in nonprofits that are barely keeping their doors open. So it’s your tax status. It’s not really, you know, your ethical status or the quality of care. I mean, there’s good nonprofits, there’s good for-profits. You know, this whole thing is like, if I were a hospital, I would be getting this huge tax break, and what am I doing to deserve it? And that’s the question.
Rovner: And I think the argument is, you know, that the 7.7% uninsured we were talking about, that hospitals are supposed to be providing care as part of their community benefit that the federal government now is ending up paying for. I think that’s sort of the frustration. If nonprofit hospitals were doing what they were supposed to do, it would cost federal and state governments less money, which always surprises me because this is not gone after more. I mean, Grassley has spent his whole career working on various types of government fraud. So this is totally in line for him. But it’s never just seemed to be a big priority for any administration.
Huetteman: There’s a little bit of an X factor here. Look at the fact that Grassley and Warren are talking about this publicly now. Maybe I’m just really optimistic from all the journalism we’ve been doing about projects like “Bill of the Month.” But the reality is that a lot of people are now seeing reporting that’s showing to them what nonprofit hospitals are actually doing when it comes to pursuing patients who don’t pay bills. And what it means to have community benefit comes into question a lot when you talk about wage garnishment, suing patients who are low-income for their medical debt. These are things that journalists have uncovered over and over again, happening at — ding, ding, ding — nonprofit hospitals. It’s harder to argue that hospitals are just doing their best for people when you have these stories of poor people who are losing their homes over unpaid medical bills, for instance. And I think that right now, when we’re in this political moment where health care costs are so, so potent to people and so important, I mean, could we see that this will actually be more effective, that we’re heading towards something that’s more effective? Maybe.
Rovner: Well, repeats the journalist, as we all are, the power of storytelling. Definitely the public is primed. I imagine that’s why they’re doing it now. We’ll see what comes of it.
Kenen: think the public is primed for bad practices. I’m not sure how many patients understand if the hospital they go to is a nonprofit or a for-profit. I think the public understands that everything in health care costs too much and that there are bad actors and greed. There’s a difference between profit and greed, and I think many people would say that we’re now in an era of greed. And not everybody in the health care sector — before anybody calls us up and shouts, “Not everybody who provides care is greedy” — but we’ve seen, you know, it is clearly out there. You know, you had Zeke Emanuel on a couple of weeks ago. Remember what he said, that, you know, 10 years ago, some people still liked their health care and now nobody likes their health care, rich or poor.
Rovner: Yeah, he’s right. All right. Well, that is this week’s news. Now, we’ll play my interview with Kate McEvoy of the National Association of Medicaid Directors about how the Medicaid unwinding is going. And one note before you listen: Kate frequently refers to the federal CMCS, which is not a misspeak; it stands for the Center for Medicaid and CHIP Services, which is the branch of CMS, the Centers for Medicare & Medicaid Services, that deals with Medicaid. So, here’s the interview:
I am pleased to welcome to the podcast Kate McEvoy, executive director of the National Association of Medicaid Directors, which is pretty much exactly what the name says, a group where state Medicaid officials can share information and ideas. Kate, welcome to “What the Health?”
Kate McEvoy: Good afternoon. Thanks for having me.
Rovner: Obviously, the Medicaid unwinding, which we have talked about a lot on the podcast, is Topic A for your members right now. Remind us again which Medicaid recipients are having their coverage eligibility rechecked? It’s not just those in the expansion group from the Affordable Care Act, right?
McEvoy: It’s not, no. Each and every person served by the country nationwide has to be reevaluated from an eligibility standpoint this year.
Rovner: What do we know about how it’s going? We’re seeing lots of reports that suggest the vast majority of people losing coverage are for paperwork reasons, not because they’ve been found to be no longer eligible. I know you recently surveyed your members. What are they telling you about this?
McEvoy: So, I first want to say this is an unprecedented task and it’s obviously historically significant for everyone served by the program. The volume of the work, and also the complexity, makes it a challenging task for all states and territories. But what we are seeing to date is a few things. First, we have seen an incredible effort on the part of states and territories to saturate really every means of communicating with their membership, really getting out that message around connecting with the programs, especially if an individual has moved during the period of the pandemic, which is very typical for people served by Medicaid. So that saturation of messaging and use of new means of connecting with people, like texting, really does represent a tremendous advance for the Medicaid program that has traditionally relied on a lot of complex, formal, legal notices to people. So that seems like a very positive thing. What we are seeing, and this is not unexpected, is that, you know, for reasons related to complex life circumstances and competing considerations, many people are not responding to those notices, no matter how we are transmitting those messages. And so that is a piece that is of great interest and concern to all of us, notably Medicaid directors wanting to make sure that eligible folks do not lose coverage simply because they are not responsive to the requests for more information. So we’re at a point where we’re beyond that initial push around messaging and now are really focused on means of protecting people who remain eligible, either through automatic review of their eligibility — the ex parte process — or by restoring them through such means as reconsideration. That’s really the main focus right now.
Rovner: And there’s that 90-day reconsideration window. Is that … how does that work?
McEvoy: So the federal law gives this period of 90 days to families and children within which they can be renewed with very little effort, essentially removing the responsibility to complete a new application. We also have long-standing help to people called “presumptive eligibility.” So if someone goes to a federally qualified health center or, more unfortunately, goes to the hospital, many of those types of providers can restore someone’s eligibility. So those are important protective pieces. We also know from the survey that you mentioned of our membership that many states and territories are extending those reconsideration protections to all coverage groups — also including older adults and people with disabilities.
Rovner: So are there any states that are doing anything that’s different and innovative? I remember when CHIP [the federal Children’s Health Insurance Program] was being stood up — and boy, that was a long time ago, like 1999 — South Carolina put flyers in pizza boxes, and some other state put flyers in sneaker boxes for back-to-school stuff. Are there better ways to maybe get ahold of these people?
McEvoy: So I think the answer is: a lot of different channels. Our colleagues in Louisiana have a partnership with Family Dollar stores to essentially feature this information on receipts. There’s a lot of work at pharmacy counters. Some of the big chain pharmacies have QR codes and other means of prompting people around their Medicaid eligibility. There’s going to be a big push for the back-to-school effort. And I think CMS and states are really interested, particularly in ensuring that children do not lose coverage even if their parents have regained employment and they’re no longer eligible. Another thing that’s going on is a lot of innovation in the means of enabling access to information. So many states have put in place personal apps through which people can track their own eligibility. There’s interest and some uptake of the so-called pizza-tracker function — so you can kind of see where you’re situated in that pipeline — and also a lot of use of automation to help call people back if they’re trying to get to state call centers. So really, all of those types of strategies … we’re seeing a huge amount of effort across the country.
Rovner: How’s the cooperation going with the Department of Health and Human Services? I know that … they seem to be not happy with some states. Are they being helpful, in general?
McEvoy: They’re being extraordinarily helpful. I would say that we often talk about Medicaid representing a federal-state equity partnership, and we’ve seen that manifest from the beginning of the first notice of the certainty around the start of the unwinding. CMCS has consistently offered guidance to states. They work with states using a mitigation approach as opposed to moving rapidly to compliance. We feel mitigation is the best way of essentially working out the strategies that are going to best protect continuing eligibility for people at the state level. And we really appreciate CMS’ efforts on that. We understand they do have to ensure accountability across the country, and we’re mutually committed to that.
Rovner: You better explain mitigation strategies.
McEvoy: Yeah, so this is a year where we are calling the question on eligibility standards that help ensure that the pathway to Medicaid coverage is a smooth one, and also that there is continuity of coverage. So, for any state that wasn’t yet meeting all those standards, CMCS essentially entered into an agreement with the state or territory to say, here is how you will get there. And that could have involved some means of improving the automatic renewals for Medicaid. It could have meant relying on an integrated eligibility processes. There are a lot of different tools and strategies that were put in place, but essentially that is a path to every state and territory coming into full compliance.
Rovner: Is there anything unexpected that’s happening? I know so much of this was predicted, and it was predicted that the states that went first that, you know, were really in a hurry to get extra people off of their rolls seem to be doing just that: getting extra people off of their rolls. Are you surprised at the differences among states?
McEvoy: I think that there have definitely been differences among states in terms of the tools they have used from a system standpoint, but I don’t see any differences in terms of retention of eligible people. That remains a shared goal across the entire country. And again, this is a watershed point where we have the opportunity to bring everyone to the same standards, ongoing, so that we help to prevent some of the heartache of the eligibility process for folks ongoing.
Rovner: Anything else I didn’t ask?
McEvoy: Well, I think that piece around the reconsideration period is particularly important. We are struck by there being probably less literacy around that option, and that’s something we want to continue to promote. The other piece I’d wind up by saying is that the Medicaid program is always available for people who are eligible. So in the worst-case scenario in which an otherwise eligible person loses coverage, they can always come back and be covered. This is in contrast to private insurance that may have an annual open enrollment period. Medicaid, as you know, is available on a rolling basis, and we want to keep reinforcing that theme so that no one goes with a gap in coverage.
Rovner: Kate McEvoy, thank you very much. And I hope we can call you back in a couple of months.
McEvoy: I would be very happy to hear from you.
Rovner: OK. We are back and it’s time for our extra credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. I did mine already. Emmarie, why don’t you go next?
Huetteman: My story this week comes from KFF Health News, my colleague Darius Tahir. He has a story called “The NIH Ices a Research Project. Is It Self-Censorship?” Now, the story talks about the fact that the former head of NIH Francis Collins, was, as he was leaving, announcing an effort to study health communications. And we’re talking about not just doctor-to-patient communications, but actually also how mass communications impact American health. But as Darius found out, the acting director quietly ended the program as NIH was preparing to open its grant applications. And officials who spoke with us said that they think political pressure over misinformation is to blame. Now, we don’t have to look too far for examples of conservative pressure over misinformation and information these days. In particular, there’s a notable one from just last month out of a Louisiana court, the federal court decision that blocked government officials from communicating with social media companies. You really don’t have to look too far to see that there’s a chilling effect on information. And we’re talking about the NIH was going to study or rather fund studies into communication and information. Not misinformation, information: how people get information about their health. So it’s a pretty interesting example and a really great story worth your read.
Rovner: And I’ve done nothing but preach about public health communication for three years now.
Kenen: It’s a very good story.
Rovner: Yeah, it was a really good story. Rachel, you’re next.
Roubein: All right. This story is called “From Windows to Wall Art, Hospitals Use Virtual Reality to Design More Inclusive Rooms for Kids,” by Stat News, by Mohana Ravindranath. And I thought this story was really interesting because she kind of dived into what Mohana called “a budding movement to make architecture more inclusive” for the people and patients who are spending a lot, a lot of time in hospital walls. And what some researchers are doing is using virtual reality to essentially gauge how comfortable children who are patients are in hospital rooms. And she talked to researchers at Berkeley who were using these, like, virtual reality headsets to kind of study and explore mocked-up hospital rooms. And, I didn’t know a ton about this field. I mean, apparently it’s not new, but it’s this kind of growing sort of movement to make patients more comfortable in the space that they’re inhabiting for perhaps long periods of time.
Rovner: I went to a conference on architecture, hospital architecture, making it more patient-centered, 10 years ago. But my favorite thing that I still remember from that is they talked about putting art on the ceiling because people are either in bed or they’re in gurneys. They’re looking up at the ceiling a lot. And ceilings are scary in hospitals. So that was one of the things that I took away from that. OK, Joanne, now it’s your turn.
Kenen: OK. This is from Fox News. And yes, you did hear that right. It’s by Melissa Rudy, and the headline is “Male Health Care Leaders Complete ‘Simulated Breastfeeding Challenge’ at Texas Hospital: ‘Huge Eye-Opener’.” So at Covenant Health, they had a bunch of high-level guys in suits pretend they were nursing and/or pumping mothers, and they had to nurse every three hours for 20 minutes at a time. And they found it was quite difficult and quite cumbersome and they didn’t have enough privacy. And as one of them said, “There was no way to multitask.” But trust me, if you have two kids, you have to figure that out, too. So it was a really good story.
Rovner: Some of these things that we feel like should be required everywhere, but it was a great read; it was a really good story. OK, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us too. Special thanks this week to Zach Dyer, sitting in for the indefatigable Francis Ying. And as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me or X me or whatever; I’m @jrovner. And also on Bluesky and Threads. Rachel?
Roubein: @rachel_roubein — that’s on Twitter.
Rovner: Joanne.
Kenen: In most places I’m @JoanneKenen. On Threads, I’m @joannekenen1.
Rovner: Emmarie.
Huetteman: And I am @emmarieDC.
Rovner: We will be back in your feed next week. Until then, be healthy.
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The Real Costs of the New Alzheimer’s Drug, Most of Which Will Fall to Taxpayers
The first drug purporting to slow the advance of Alzheimer’s disease is likely to cost the U.S. health care system billions annually even as it remains out of reach for many of the lower-income seniors most likely to suffer from dementia.
Medicare and Medicaid patients will make up 92% of the market for lecanemab, according to Eisai Co., which sells the drug under the brand name Leqembi. In addition to the company’s $26,500 annual price tag for the drug, treatment could cost U.S. taxpayers $82,500 per patient per year, on average, for genetic tests and frequent brain scans, safety monitoring, and other care, according to estimates from the Institute for Clinical and Economic Review, or ICER. The FDA gave the drug full approval July 6. About 1 million Alzheimer’s patients in the U.S. could qualify to use it.
Patients with early Alzheimer’s disease who took lecanemab in a major clinical trial declined an average of five months slower than other subjects over an 18-month period, but many suffered brain swelling and bleeding. Although those side effects usually resolved without obvious harm, they apparently caused three deaths. The great expense of the drug and its treatment raises questions about how it will be paid for, and who will benefit.
“In the history of science, it’s a significant achievement to slightly slow down progression of dementia,” said John Mafi, a researcher and associate professor of medicine at the David Geffen School of Medicine at UCLA. “But the actual practical benefits to patients are very marginal, and there is a real risk and a real cost.”
To qualify for Leqembi, patients must undergo a PET scan that looks for amyloid plaques, the protein clumps that clog the brains of many Alzheimer’s patients. About 1 in 5 patients who took Leqembi in the major clinical test of the drug developed brain hemorrhaging or swelling, a risk that requires those taking the drug to undergo frequent medical checkups and brain scans called MRIs.
In anticipation of additional costs from the Leqembi drug class, the Centers for Medicare & Medicaid Services in 2021 increased monthly premiums for Medicare patients by 15%, and premiums may rise again in 2024 after a slight decline this year.
Such increases can be a significant burden for many of the 62 million Medicare subscribers who live on fixed incomes. “Real people will be affected,” Mafi said. He contributed to a study that estimated lecanemab and related care would cost Medicare $2 billion to $5 billion a year, making it one of the most expensive taxpayer-funded treatments.
In its analysis, ICER suggested that Leqembi could be cost-effective at an annual price of $8,900 to $21,500. In an interview, David Rind, ICER’s chief medical officer, said $10,000 to $15,000 a year would be reasonable. “Above that range doesn’t seem like a good place,” he said.
Whatever its price, patients may be delayed getting access to Leqembi because of the relative shortage of specialists capable of managing the drug, which will require genetic and neuropsychological testing as well as the PET scan to confirm a patient’s eligibility. A similar drug, Eli Lilly’s donanemab, is likely to win FDA approval this year.
Already there are long waits for the testing needed to assess dementia, Mafi said, noting that one of his patients with mild cognitive impairment had to wait eight months for an evaluation.
Such testing is not readily at hand because of the paucity of effective treatment for Alzheimer’s, which has helped to make geriatrics a relatively unappealing specialty. The United States has about a third as many dementia specialists per capita as Germany, and about half as many as Italy.
“Time is of the essence” for the neuropsychological testing, Mafi said, because once a patient’s cognitive ability declines below a certain threshold, they become ineligible for treatment with the drug, which was tested only in patients in the earliest stages of the disease.
Mafi’s study estimates that patients without supplemental Medicare coverage will have to pay about $6,600 out-of-pocket for each year of treatment. That could put it out of reach for many of the 1 in 7 “dual eligible” Medicare beneficiaries whose income is low enough to simultaneously qualify them for state Medicaid programs. Those programs are responsible for about 20% of physician bills for drug infusions, but they don’t always cover the full amount.
Some practitioners, such as cancer centers, cover their Medicaid losses by receiving higher rates for privately insured patients. But since almost all lecanemab patients are likely to be on government insurance, that “cross-subsidization” is less of an option, said Soeren Mattke, director of the Center for Improving Chronic Illness Care at the University of Southern California.
This poses a serious health equity issue because “dual eligibles are low-income patients with limited opportunities and education, and at higher risk of chronic illnesses including dementia,” Mattke said in an interview. Yet many doctors may not be willing to treat them, he said. “The idea of denying access to this group is just appalling.”
Eisai spokesperson Libby Holman said the company was reaching out to specialists and primary care physicians to make them aware of the drug, and that reimbursement options were improving. Eisai will provide the drug at no cost to patients in financial need, she said, and its “patient navigators” can help lock down insurance coverage.
“A lot of clinicians are excited about the drug, and patients are hearing about it,” said David Moss, chief financial officer of INmune Bio, a company that has another Alzheimer’s drug in development. “It’s a money center for infusion centers and MRI operators. It provides reasons for patients to come into the office, which is a billing thing.”
Outstanding doubts about Leqembi and related drugs have given urgency to efforts to monitor patient experiences. CMS is requiring Leqembi patients to be entered into a registry that tracks their outcomes. The agency has established a registry, but the Alzheimer’s Association, the leading advocacy group for dementia patients, is funding its own database to track those being treated, offering physician practices $2,500 to join it and up to $300 per patient visit.
In a letter to CMS on July 27, a group of policy experts said CMS should ensure that any and all Leqembi registries create and share data detailed enough for researchers and FDA safety teams to obtain a clear picture of the drug’s real-world profile.
The anti-amyloid drugs like lecanemab have created a polarized environment in medicine between those who think the drugs are a dangerous waste of money and those who believe they are a brilliant first step to a cure, said ICER’s Rind, who thinks lecanemab has modest benefits.
“People are as dug in on this as almost anything I’ve ever seen in medicine,” he said. “I don’t think it’s healthy.”
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2 years 2 months ago
Aging, Health Care Costs, Health Industry, Medicaid, Medicare, Pharmaceuticals, Alzheimer's, CMS, Drug Costs