Last year alone, David Mitchell paid $16,525 for 12 little bottles of Pomalyst, one of the pricey medications that treat his multiple myeloma, a blood cancer he was diagnosed with in 2010.

The drugs have kept his cancer at bay. But their rapidly increasing costs so infuriated Mitchell that he was inspired to create an advocacy movement.

Patients for Affordable Drugs, which he founded in 2016, was instrumental in getting drug price reforms into the 2022 Inflation Reduction Act. Those changes are kicking in now, and Mitchell, 73, is an early beneficiary.

In January, he plunked down $3,308 for a Pomalyst refill “and that’s it,” he said. Under the law, he has no further responsibility for his drug costs this year — a savings of more than $13,000.

The law caps out-of-pocket spending on brand-name drugs for Medicare beneficiaries at about $3,500 in 2024. The patient cap for all drugs drops to $2,000 next year.

“From a selfish perspective, I feel great about it,” he said. But the payment cap will be “truly life-changing” for hundreds of thousands of other Medicare patients, Mitchell said.

President Joe Biden’s battle against high drug prices is mostly embodied in the IRA, as the law is known — a grab bag of measures intended to give Medicare patients immediate relief and, in the long term, to impose government controls on what pharmaceutical companies charge for their products. The law represents the most significant overhaul for the U.S. drug marketplace in decades.

With Election Day on the horizon, the president is trying to make sure voters know who was responsible. This month, the White House began a campaign to get the word out to seniors.

“The days where Americans pay two to three times what they pay for prescription drugs in other countries are ending,” Biden said in a Feb. 1 statement.

KFF polling indicates Biden has work to do. Just a quarter of adults were aware that the IRA includes provisions on drug prices in July, nearly a year after the president signed it. He isn’t helped by the name of the law, the “Inflation Reduction Act,” which says nothing about health care or drug costs.

Biden’s own estimate of drug price inflation is quite conservative: U.S. patients sometimes pay more than 10 times as much for their drugs compared with people in other countries. The popular weight loss drug Wegovy lists for $936 a month in the U.S., for example — and $83 in France.

Additional sections of the law provide free vaccines and $35-a-month insulin and federal subsidies to patients earning up to 150% of the federal poverty level, and require drugmakers to pay the government rebates for medicines whose prices rise faster than inflation. But the most controversial provision enables Medicare to negotiate prices for certain expensive drugs that have been on the market for at least nine years. It’s key to Biden’s attempt to weaken the drug industry’s grip.

Responding to Pressure

The impact of Medicare’s bargaining over drug prices for privately insured Americans remains unclear. States have taken additional steps, such as cutting copays for insulin for the privately insured.

However, insurers are increasing premiums in response to their higher costs under the IRA. Monthly premiums on traditional Medicare drug plans jumped to $48 from $40 this year, on average.

On Feb. 1, the Centers for Medicare & Medicaid Services sent pharmaceutical makers opening bids for the first 10 expensive drugs it selected for negotiation. The companies are responding to the bids — while filing nine lawsuits that aim to kill the negotiations altogether, arguing that limiting their profits will strangle the pipeline of lifesaving drugs. A federal court in Texas dismissed one of the suits on Feb. 12, without taking up the substantive legal issue over constitutionality.

The nonpartisan Congressional Budget Office predicted the IRA’s drug pricing elements would save the federal government $237 billion over 10 years while reducing the number of drugs coming to market in that period by about two.

If the government prevails in the courts, new prices for those 10 drugs will be announced by September and take effect in 2026. The government will negotiate an additional 15 drugs for 2027, another 15 for 2028, and 20 more each year thereafter. CMS has been mum about the size of its offers, but AstraZeneca CEO Pascal Soriot on Feb. 8 called the opening bid for his company’s drug Farxiga (which earned $2.8 billion in U.S. sales in fiscal year 2023) “relatively encouraging.”

Related Biden administration efforts, as well as legislation with bipartisan support, could complement the Inflation Reduction Act’s swing at drug prices.

The House and Senate have passed bills that require greater transparency and less self-serving behavior by pharmacy benefit managers, the secretive intermediaries that decide which drugs go on patients’ formularies, the lists detailing which prescriptions are available to health plan enrollees. The Federal Trade Commission is investigating anti-competitive action by leading PBMs, as well as drug company patenting tricks that slow the entry of cheaper drugs to the market.

‘Sending a Message’

Months after drug companies began suing to stop price negotiations, the Biden administration released a framework describing when it could “march in” and essentially seize drugs created through research funded by the National Institutes of Health if they are unreasonably priced.

The timing of the march-in announcement “suggests that it’s about sending a message” to the drug industry, said Robin Feldman, who leads the Center for Innovation at the University of California Law-San Francisco. And so, in a way, does the Inflation Reduction Act itself, she said.

“I have always thought that the IRA would reverberate well beyond the unlucky 10 and others that get pulled into the net later,” Feldman said. “Companies are likely to try to moderate their behavior to stay out of negotiations. I think of all the things going on as attempts to corral the market into more reasonable pathways.”

The IRA issues did not appear to be top of mind to most executives and investors as they gathered to make deals at the annual J.P. Morgan Healthcare Conference in San Francisco last month.

“I think the industry is navigating its way beyond this,” said Matthew Price, chief operating officer of Promontory Therapeutics, a cancer drug startup, in an interview there. The drugs up for negotiation “look to be assets that were already nearing the end of their patent life. So maybe the impact on revenues is less than feared. There’s alarm around this, but it was probably inevitable that a negotiation mechanism of some kind would have to come in.”

Investors generally appear sanguine about the impact of the law. A recent S&P Global report suggests “healthy revenue growth through 2027” for the pharmaceutical industry.

Back in Washington, many of the changes await action by the courts and Congress and could be shelved depending on the results of the fall election.

The restructuring of Medicare Part D, which covers most retail prescription drugs, is already lowering costs for many Medicare patients who spent more than $3,500 a year on their Part D drugs. In 2020 that was about 1.3 million patients, 200,000 of whom spent $5,000 or more out-of-pocket, according to KFF research.

“That’s real savings,” said Tricia Neuman, executive director of KFF’s Medicare policy program, “and it’s targeted to people who are really sick.”

Although the drug industry is spending millions to fight the IRA, the Part D portion of the bill could end up boosting their sales. While it forces the industry to further discount the highest-grossing drugs, the bill makes it easier for Medicare patients to pick up their medicines because they’ll be able to afford them, said Stacie Dusetzina, a Vanderbilt University School of Medicine researcher. She was the lead author of a 2022 study showing that cancer patients who didn’t get income subsidies were about half as likely to fill prescriptions.

States and foundations that help patients pay for their drugs will save money, enabling them to procure more drugs for more patients, said Gina Upchurch, the executive director of Senior PharmAssist, a Durham, North Carolina-based drug assistance program, and a member of the Medicare Payment Advisory Commission. “This is good news for the drug companies,” she said.

Relief for Patients

Lynn Scarfuto, 73, a retired nurse who lives on a fixed income in upstate New York, spent $1,157 for drugs last year, while most of her share of the $205,000 annual cost for the leukemia drug Imbruvica was paid by a charity, the Patient Access Network Foundation. This year, through the IRA, she’ll pay nothing because the foundation’s first monthly Imbruvica payment covered her entire responsibility. Imbruvica, marketed jointly by AbbVie and Janssen, a subsidiary of Johnson & Johnson, is one of the 10 drugs subject to Medicare negotiations.

“For Medicare patients, the Inflation Reduction Act is a great, wonderful thing,” Scarfuto said. “I hope the negotiation continues as they have promised, adding more drugs every year.”

Mitchell, a PR specialist who had worked with such clients as the Campaign for Tobacco-Free Kids and pharmaceutical giant J&J, went to an emergency room with severe back pain in November 2010 and discovered he had a cancer that had broken a vertebra and five ribs and left holes in his pelvis, skull, and forearm bones. He responded well to surgery and treatment but was shocked at the price of his drugs.

His Patients for Affordable Drugs group has become a powerful voice in Washington, engaging tens of thousands of patients, including Scarfuto, to tell their stories and lobby legislatures. The work is supported in part by millions in grants from Arnold Ventures, a philanthropy that has supported health care policies like lower drug prices, access to contraception, and solutions to the opioid epidemic.

“What got the IRA over the finish line in part was angry people who said we want something done with this,” Mitchell said. “Our patients gave voice to that.”

Arnold Ventures has provided funding for KFF Health News.

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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The Host

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.

A federal judge in Texas has turned back the first challenge to the nascent Medicare prescription-drug negotiation program. But the case turned on a technicality, and drugmakers have many more lawsuits in the pipeline.

Meanwhile, Congress is approaching yet another funding deadline, and doctors hope the next funding bill will cancel the Medicare pay cut that took effect in January.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat, and Lauren Weber of The Washington Post.

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories.

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories.

Lauren Weber
The Washington Post

@LaurenWeberHP

Read Lauren's stories.

Among the takeaways from this week’s episode:

• Rep. Cathy McMorris Rodgers (R-Wash.), chair of the powerful House Energy and Commerce Committee, announced she would retire at the end of the congressional session, setting off a scramble to chair a panel with significant oversight of Medicare, Medicaid, and the U.S. Public Health Service. McMorris Rodgers is one of several Republicans with significant health expertise to announce their departures.
• As Congress’ next spending bill deadline approaches, lobbyists for hospitals are feverishly trying to prevent a Medicare provision on “site-neutral” payments from being attached.
• In abortion news, anti-abortion groups are joining the call for states to better outline when life and health exceptions to abortion bans can be legally permissible.
• Senate Finance Chairman Ron Wyden (D-Ore.) is asking the Federal Trade Commission and the Securities and Exchange Commission to investigate a company that collected location data from patients at 600 Planned Parenthood sites and sold it to anti-abortion groups.
• And in “This Week in Health Misinformation”: Lawmakers in Wyoming and Montana float bills to let people avoid getting blood transfusions from donors who have been vaccinated against covid-19.

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

Julie Rovner: Stateline’s “Government Can Erase Your Medical Debt for Pennies on the Dollar — And Some Are,” by Anna Claire Vollers.

Alice Miranda Ollstein: Politico’s “‘There Was a Lot of Anxiety’: Florida’s Immigration Crackdown Is Causing Patients to Skip Care,” by Arek Sarkissian.

Rachel Cohrs: Stat’s “FTC Doubles Down in Welsh Carson Anesthesia Case to Limit Private Equity’s Physician Buyouts,” by Bob Herman. And Modern Healthcare’s “Private Equity Medicare Advantage Investment Slumps: Report,” by Nona Tepper.

Lauren Weber: The Wall Street Journal’s “Climate Change Has Hit Home Insurance. Is Health Insurance Next?” by Yusuf Khan.

Also mentioned on this week’s podcast:

• The Washington Post’s “U.S. Investigates Alleged Medicare Fraud Scheme Estimated at $2 Billion,” by Dan Diamond, Lauren Weber, and Dan Keating.
• Super Bowl ads from Pfizer, Power to the Patients, and the American Values 2024 super PAC.
• KFF Health News’ “Rapper Fat Joe Says No One Is Making Sure Hospitals Post Their Prices,” by Julie Appleby.

click to open the transcript

Transcript: Biden Wins Early Court Test for Medicare Drug Negotiations

KFF Health News’ ‘What the Health?’Episode Title: Biden Wins Early Court Test for Medicare Drug NegotiationsEpisode Number: 334Published: Feb. 15, 2024

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Feb. 15, 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 Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Lauren Weber of The Washington Post.

Lauren Weber: Hello, hello.

Rovner: And Rachel Cohrs of Stat News.

Rachel Cohrs: Hi everyone.

Rovner: No interview this week, but we do have a special Valentine’s Day surprise. But first, the news. We’re going to start this week in federal district court, where the drug industry has lost its first legal challenge to the Biden administration’s Medicare drug price negotiation program, although on a technicality. Rachel, which case was this, and now what happens?

Cohrs: This was the capital “P” PhRMA trade association. And this case was a little bit of a stretch, anyways, because they were trying to find some way to get a judge in Texas to hear it. Because the broader strategy is for companies and trade groups to spread out across the country and try to get conflicting decisions from these lower courts.

Rovner: Which would force the Supreme Court to take it?

Cohrs: Exactly, yes. Or make it more likely. So PhRMA, in this case, they had recruited, there’s a national group that represents infusion centers and that was headquartered in Texas. The judge ultimately ended up ruling that this association didn’t follow the right procedure to qualify for judicial review and threw them off the case. And then they were like, well, if you throw them off the case, then there’s nobody in Texas, you can’t hear this here. So that was the ultimate decision there, but this could come back up. It was dismissed without prejudice. So this isn’t the end of the road for this lawsuit.

And it’s important to keep in mind that this wasn’t a ruling on any of the substance of the arguments. And trade groups generally are going to have less of an argument for standing, or it’s going to be a harder argument than the companies themselves that actually have drugs up for negotiation.

Rovner: And they’re suing too, the drug companies?

Cohrs: They are suing too. Yeah, just for everybody to keep on your calendars, there’s a judge in New Jersey who is hoping to have a quadruple oral argument on four of these cases, so stay tuned. That could be coming early next month. But these are very much moving. I think we are going to get insight on some of these arguments pretty soon, but this case is not quite that test case yet.

Rovner: All right, well, we’ll get to it eventually. Well, moving on to Capitol Hill. When we were taping last week, Sen. Bernie Sanders was holding his much-publicized hearing to grill drug company CEOs about their too-high prices. Rachel, you were there. Did anything significant happen?

Cohrs: I think it was kind of expected. I don’t think we were trying to find any innovative legislative solutions here. Honestly, it seemed, just from a candid take, that a lot of these lawmakers were not very well-prepared for questioning. There were a couple of notable exceptions, but we didn’t learn a whole lot new about why drug prices are high in the United States, how our system works differently from other countries.

I did find some useful nuggets in the CEO’s testimony about how low the net prices are for some of their medications, that they’re already offering a 70% discount, a 90% discount, which to me just kind of put into perspective some of the discounts we could be hearing in the Medicare negotiation program. That oh, even if it’s a 90% discount, that might not even be different from what they’re paying now. So just interesting to file a way for the future, but I think it was mostly a non-event for the CEOs who, for some reason, had to, under the threat of subpoena, come make these arguments. So it seemed like much ado about not a whole lot of substance.

Rovner: That was sort of my theory going in, but you always have to watch just in case. Well, also on Capitol Hill, the chairman of the powerful House Energy and Commerce Committee announced she will retire at the end of the Congress. Cathy McMorris Rodgers, who’s a Republican from Washington, was in her first term as chair of the committee that oversees parts of Medicare, all of Medicaid, as well as the entire U.S. Public Health Service.

I imagine this is going to set off a good bit of jockeying to take her place. And why would somebody step down early from such a powerful position? Do we have any idea?

Cohrs: Have you seen …? Oh, go ahead.

Ollstein: Facing Congress is what you say? Yes. This is part of a wave of retirements we’ve been seeing recently, including from some other committee chairs who could have theoretically continued to be powerful committee chairs for several years to come. People are taking this as part of the bad sign for Republicans. Either a sign that they don’t believe they’re going to hold the majority after this November’s election, or they’re just so fed up with the struggles they’ve had governing over the last few years and the inability to get anything done. And people are thinking, well, maybe I can get something done in a different role, not in Congress, because certainly, we’re not doing too much here to be proud of.

Rovner: Yeah, I feel like Cathy McMorris Rodgers is kind of this poster child for a very conservative Republican who’s not the far-right-wing MAGA type, who actually wants to do legislation. She just wants to do Republican legislation, and that seems to be getting harder in the House.

Ollstein: Right, right. And there’s a concern that, particularly on the right within Republicans, that we’re losing a health policy brain trust. We’re losing the people that have been really integral to a lot of the nitty-gritty policy work over the years, and they’re not being replaced with people who have that interest. They’re being replaced with people who are more focused on culture wars and other things. And so there’s concern in the future about the ability to cobble together things like Medicare reimbursement rates, or these technical things that aren’t really part of the culture wars.

Rovner: Yeah, I think we mentioned at some point that Mike Burgess is also retiring, also high up on the Energy and Commerce Committee. And he’s a doctor who’s really had his hands into some of this really nerdy stuff, like on Medicare physician reimbursement. And that will be obviously just a big loss of institutional memory there.

Cohrs: For the future of the committee, I know congressman Brett Guthrie has kind of thrown his hat in the ring to succeed her. Unclear who exactly is going to win this race, but he is the chairman of the health subcommittee, does bring some health expertise. So the E&C committee deals with a lot of different priorities, but if he were to succeed her, then I think we would see, at least at the top of the committee, some of the expertise remain.

Rovner: Well, meanwhile, in all of this jockeying, the next round of temporary government funding bills expires on March 1 and March 8, respectively, which is getting pretty close. And that brings back efforts to cancel the 3.4% pay cut that doctors got for Medicare patients in January. Where are we on funding, and are any of these health issues that people are out lobbying on going to make it into this next round? Is there going to be a next round?

Cohrs: Yeah, we don’t know if there’s going to be a next round, I don’t think. But at least the sources I’ve talked to have said that a full cancellation of the 3.4% cut for Medicare or payments to doctors is off the table at this point. They are hoping to do some sort of partial relief. They haven’t decided on percentages for that yet. And it’s unclear how much money will be available from pay-fors. It is still very much squishy, not finalized, two, three weeks out from the deadline, but I think …

Rovner: Two weeks.

Cohrs: There is some agreement on some relief, which has not been the case thus far for doctors. So I think that’s a positive sign.

Ollstein: Yeah. Overall, the chatter is about the need for yet another CR [continuing resolution] because the work is not getting done in time to meet these deadlines. That seems to be where we’re headed. Obviously, that will piss off a lot of members on the right who don’t want another CR, who didn’t want the last couple CRs. And so once again, we are staring down a possible shutdown.

Rovner: And I had forgotten, somebody reminded me, that even if they get another temporary funding bill, starting in April, there are automatic cuts if they’re not finished with this year’s funding bills. Which, I don’t know, is there any indication that they’re going to be finished with them by April either? I have not seen a lot of progress here. They’ve been fighting over other things, which is fine to fight over other things, but I’m not noticing a lot happening on the spending bills.

I’m seeing a lot of shaking heads. I guess nobody else is noticing either. Well, we will obviously keep watching that space because next week, we will only be one week away.

Well, another Medicare policy that supporters are hoping to get into one or another of these spending bills is creating something called more site-neutral payments in Medicare. Currently, Medicare pays hospitals and hospital outpatient departments, and sometimes even hospital-owned physician practices, more than it pays non-hospital affiliated providers for the exact same service.

The theory is that hospitals need higher payments because they have higher fixed costs, like keeping emergency rooms open 24/7. But it costs Medicare many billions of taxpayer dollars for this differential in payments. And this has become quite the lobbying frenzy for the hospital industry, yes?

Cohrs: Yes. I think it’s something that they can all get on board with hating, and I think they view it similarly to the drug pricing debate as a slippery slope. The policy Congress really is looking at now is a $3 billion, very small slice of all the services that could potentially be subjected to site-neutral payments. But the whole pie here is $150 billion potentially for Medicare.

We’re talking hundreds of billions of dollars for commercial payments. So I think they are really pushing to get to lawmakers, especially, from what I’ve talked to Senate Republicans, they are just not on board with it, they’re worried about the rural hospitals. And if they can connect to those things, which they have been successful in doing so far, they’re just not going to get very far.

I mean, if you look at the Senate Finance Committee, you have Mike Crapo from Idaho, Republican leadership. You have [John] Barrasso from Wyoming. There’s really just so many rural states that even Chuck Grassley, who is a moderate on a lot of health policy issues, talked about his rural hospitals in Iowa as soon as I asked him about this. So they’re not there yet right now, but I think hospitals are trying to keep it that way.

Rovner: And it was ever thus that the Senate is much more rural-focused than the House because pretty much every single senator has at least part of a rural area that they represent. Lauren, you wanted to add something?

Weber: Yeah, I just wanted to say, I always find it funny when rural hospitals come up as a cudgel by the big hospital associations, who don’t seem to look out for them the vast majority of the time when they’re closing. But as you pointed out, the Senate is much more rural-focused. So I do agree with all of you all, that I question whether or not this will have much ground to gain.

Rovner: Yeah. And the other thing that I keep wanting to point out is that there’s all this talk on Capitol Hill among Republicans of cutting the spending bills, the appropriations, and we’re going to balance the budget. Well, there’s just not enough money in the appropriation bills to do anything to the deficit. The money is in things like Medicare. I mean, that’s where, if you really want to make a dent in the deficit, you’re going to do it. And, as we’re seeing with this particular fight, every time they want to do something that’s going to save money, it’s going to hurt somebody. And I mean, there are obviously legitimate concerns about rural hospitals that are in trouble, particularly in states that haven’t expanded Medicaid, but that’s one of the reasons. It’s not so much the spending bills that make it hard to do anything about the deficit. It’s fights like these.

Meanwhile, for better or worse, another reason that Medicare costs so much is that it’s subject to a lot of fraud. Lauren, I have seen a lot of Medicare fraud stories over the years, but you’ve got one that was discovered in a pretty novel way. So tell us about it.

Weber: Yeah, my colleagues Dan Diamond, Dan Keating, and I found out early last week — we got a tip from the National Association of ACOs [Accountable Care Organizations] saying that they had seen this massive spike in catheter billing. When we did some digging into the companies they had identified — and to be clear, that spike of catheter billing was worth an alleged $2 billion in billings to Medicare. So when we talk about site-neutral payments, that’s almost what you would get for site-neutral payments: the $2 billion in Medicare fraud, but regardless.

So my colleagues and I dug in. So Dan, Dan, and I called around, and we found links between the seven companies that were charging Medicare for catheters that folks never received. I want to point out, I spoke to this lovely woman in Ponta Vedra Beach, Florida. She’s 74, Aileen Hatcher, who spotted this diligently going through her Medicare form, but as she said, she went to her — literally, these are her words — she’s like, “I went to my old lady luncheon and told them all this was on my Medicare statement.” And they said, “Oh, we don’t read those because we don’t pay Medicare the money. So we don’t read the explanation of benefits to see what we’ve been charged.”

And, unfortunately, I think that is what happens a lot of times with Medicare fraud. It goes unnoticed because folks aren’t the ones paying the dollars. But the bottom line is this was so large and so many people called into Medicare that Dan and I discovered that there is an ongoing federal investigation. Three of the companies, former owners that I called, confirmed to me that FBI had interviewed them or was talking to them about these folks that had taken over the companies and started charging Medicare this much money. And Dan also got some sources on that front as well.

So, I mean, it’s a pretty massive Medicare fraud scheme. I’ll give a call-out here. If anyone here has been affected by catheter and Medicare fraud, please give me an email. We’d love to hear more. I think it speaks to the fact that Medicare fraud — we all know this because we cover this — Medicare fraud is as old as time. It continues to happen, especially durable medical equipment Medicare fraud. But this is so much money. And it is wild that even though we talked to so many people that called Medicare over and over and over again, these folks were able to get away with billing for a very long time.

Rovner: What I found really fascinating about the story, though, is that it was the doctors in the ACOs that spotted it because — we’ve talked about these accountable care organizations — they’re accountable for how much it costs to take care of their patients.

The patients aren’t paying for it, as they point out, but these doctors, it’s coming right out of their bonuses and what they’re charged and how much they get for Medicare. So there’s finally somebody with a real incentive to spot this kind of fraud, because, basically, it was taking money from them. Right?

Weber: That’s exactly right. I think that’s why they were so hot to have some movement on this because, as they pointed out, they could lose millions of dollars in bonuses for better taking care of their patients.

It’s wild that it gets to this point. Like I said, we had all these people that called in to Medicare and many fraud lawyers we talked to said, “Look, why aren’t the NPIs [National Provider Identifiers] turned off?” Great question.

Rovner: Yeah. Anyway, I was fascinated by this story, and as I told Lauren earlier, I’m not a big fan of Medicare fraud stories just because there are so many of them. But this one is like, oh, maybe we finally have somebody … the ACOs can become bounty hunters for Medicare fraud, which would not be a bad thing.

All right, well, moving on to abortion this week, we have spent a lot of time talking about how doctors who perform abortions and patients who need them in emergencies have been trying to get state officials to spell out when the exceptions to state bans apply. Well, now it seems that it’s the other side looking for clarification.

Stat News reports that several anti-abortion groups have joined doctors and patients in urging the Texas Medical Board to spell out which conditions would qualify for the exception to the ban, and not subject doctors who guess wrong to potential prison terms and loss of their medical licenses.

Meanwhile, legislation moving through the House in South Dakota, endorsed by multiple anti-abortion groups, would require the state to make a video explaining how its ban works and under what circumstances. Alice, what’s going on here?

Ollstein: I think it’s this interesting confluence and it’s an interesting development because, at first, anti-abortion groups were insisting that the laws were perfectly clear. And that doctors were either willfully or mistakenly misinterpreting them. As more and more stories came forward of women being turned away while experiencing a medical emergency and suffering harm as a result, a lot of those women are part of lawsuits now.

They were saying the law is fine. In some cases, these anti-abortion groups wrote the laws themselves or advised on them saying, your interpretation is what’s wrong. The law is fine. But I think as so many of these stories are coming out, that’s not proving enough. And now they’re going back and saying, OK, well, maybe there do need to be some clarifications. They don’t want changes. There’s different camps because some people do want changes. Some people say, OK, we need more exceptions. We need more carve-outs to avoid these painful stories. Whereas other anti-abortion forces and elected officials say, no, we don’t need to change the law. We just need to clarify it and explain it. And so I think that’s going to be an ongoing tension.

Rovner: Yeah, I know one of the big themes earlier in this whole fight — I won’t say earlier this year, it was mostly last year — was redefining things as not abortions. That if you’re terminating an ectopic pregnancy, that’s not an abortion. Well, that is an abortion.

Ollstein: Medically, yes.

Rovner: So apparently, the … right. The renaming has not worked so far. So now I guess they’re trying to clarify things. Lauren, you wanted to add something?

Weber: Yeah, I just wanted to say, when you kick things to the medical board, I think people see that as an unbiased unpolitical organization. But medical boards are often appointed by the governor. So, in this case, Gov. [Greg] Abbott. And also take Ohio, for example: I believe that one of their medical board leaders is the head of the right-to-life movement.

I haven’t looked at Texas’. But kicking it to the medical board to make a decision — putting aside the fact that most medical boards are incredibly inadequate at their actual job, which is disciplining doctors, they’re not necessarily known for their competence — is that you also deal with some of the politics involved in this as well.

Rovner: So in South Dakota, it would kick this to the South Dakota Department of Health, which, of course, is controlled by the governor, who’s a Republican and pro-lifer. And so it’s hard to imagine what sort of doing a video explaining this is going to do to clarify things any further than they already think the law has gone. But at least … I’m fascinated by the effort here, that this is going on in multiple states. Speaking of state legislators, in Missouri, they’re working on a bill to create an abortion ban exception for children 12 and under — obviously thinking of the 10-year-old in Ohio in 2022 [who] had to go to Indiana to get a pregnancy terminated. But one Republican state senator complained that “a 1-year-old could get an abortion under this.” This is a serious question: Should legislators have to pass a basic biology test to make laws about reproductive health? As we know, 1-year-olds cannot get pregnant.

Ollstein: I mean, this was a more glaring example. We see this over and over in a lot more subtle ways, too, where doctors and medical societies are pointing out that these laws are drafted using language that is not medically accurate at all. And it can be small things in terms of when someone should qualify for a medical exemption to an abortion ban. Some states have language around if it would cause “irreversible damage.” That’s not a term doctors use in that circumstance, things like that. Or a major bodily function would be impaired if they don’t get an abortion. Well, what is a major bodily function? That’s not defined. And so, yes, this was an almost laughable example of this, but I think that it’s a sign of something more pervasive and maybe less obvious.

Rovner: Yeah, I mean, I have listened to a lot of state debates with a lot of legislators saying things that are, as I say, kind of laughably inaccurate. Sorry, Lauren.

Weber: Oh, I would just say as a Missourian and as someone who lived in Missouri until a year ago, this gentleman, in particular, it does seem like has a history of making somewhat inflammatory statements that he knows will be picked up by the media. I mean, I think he brought a flamethrower to an event. I mean, I think that’s part of the shtick. But welcome to Missouri politics. You never know what you’re going to get.

Ollstein: And of course, we have the famous assertion that people can’t get pregnant as a result of rape because the body knows how to shut it down, which is obviously not …

Rovner: Which happened in a Missouri Senate race.

Ollstein: Yes. Yep. Exactly. So Missouri, once again, covering itself in glory.

Rovner: All right, well, something we haven’t talked about a lot recently are crisis pregnancy centers, which are usually storefronts for anti-abortion organizations that often lure women seeking abortions by offering free pregnancy tests and ultrasounds so that they can then talk them into carrying their pregnancies to term. The centers are getting more and more public support from states. One estimate is that government support totaled some $344 million in fiscal 2022. So that was a couple of years back. And increasingly as abortion clinics close in states with bans, crisis pregnancy centers, which typically don’t have medical professionals on staff and aren’t technically medical facilities, may be the only resource available to pregnant women. It seems that could have some pretty serious ramifications. Yes?

Ollstein: I mean, I think people don’t realize just how vast the network of these centers are. They outnumber abortion clinics by a lot in a lot of states, including states that support abortion rights. They’re very, very pervasive. And this is becoming a huge focus for the anti-abortion movement. It was basically the theme of this year’s March for Life, was these sort of resources. In part, it is an attempt to show a kinder face of the movement and change public opinion. Obviously, like we discussed, there are all these painful stories coming out about people being denied care. And so promoting these stories of places that provide some form of something, some services, it’s not necessarily medical care, but …

Rovner: They provide diapers and strollers and car seats. I mean, they do actually … many of them actually provide services for babies once they’re born.

Ollstein: Right. Right, right, right. And so I think there is going to be a huge focus on this in the policy space, both in terms of directing more taxpayer funding to these centers, which progressives vehemently oppose.

And so I think this is going to be a big focus going forward. It already has in Texas. Texas has directed a lot of money towards what they call alternatives to abortion, which include these centers. And so I think it’s going to be a big focus going forward.

Rovner: Well, one other thing about crisis pregnancy centers, because they are not medical facilities, they are not subject to HIPAA medical privacy rules. And it turns out that is important. According to an investigation by Senate Finance Committee Chairman Ron Wyden, a company gathered and sold location data for people whose phones were in or around 600 separate Planned Parenthood locations, without the patients’ consent, to use an anti-abortion advertising.

Wyden is asking the SEC and the FTC to investigate the company, but this raises broader questions about information privacy, particularly in the reproductive health space. I remember right after Roe v. Wade was overturned, there were lots of warnings to women who were using period-tracking apps and other things about the concern about people who you may not want to know your private medical situation being able to find out your private medical situations. Is there any indication that there’s any way from the federal government point of view to crack down on this?

Ollstein: So I don’t know about that specifically, but there is a bigger effort on privacy and digital privacy and how it relates to abortion. We’re still waiting on the release of the final HIPAA rule from the Biden administration, which will extend more protections around abortion data, I think. But, because it’s HIPAA, it does only apply to certain entities and these centers are not among them. Another area I’ve been hearing concern about is research. A researcher at a university who is studying people who have abortions or don’t have abortions, their data is not protected. And so they are very stressed out about that, and that’s compromising medical research right now. So there’s a lot of these different areas of concern. And as we so often see, technology evolves a hell of a lot faster than government evolves to regulate it and address it. And that is just an ongoing concern.

Rovner: Yes, it is. And at some point, we’ll talk about artificial intelligence, but not today. Actually, right now, I want to turn to the Super Bowl. Yes, the Super Bowl. In between all the ads for blockbuster movies, beer, cars, and snack foods, and, right, a football game, there were three ads aimed directly at health policy issues.

In one, the nonprofit price transparency advocacy group Power to the Patients got musicians Jelly Roll, Lainey Wilson, and Valerie June to basically call hospitals and insurance companies greedy. It’s not clear to me if this was a free PSA or if this group paid for it, but I suspect the latter.

Does anybody know who this group is? They seem to have lots of access to big names for what seems to be a kind of obscure health issue. I mean, everybody’s for transparency, but I don’t think I’ve ever seen a Super Bowl ad about it.

Cohrs: This is not their first Super Bowl. It’s backed by Cynthia Fisher who is married to the CEO of Sam Adams, parent company. And he’s also a member of the Koch family. But she has been passionate about health care price transparency for years. I mean, was in President [Donald] Trump’s ear, has made the legal argument that the authority existed under the Affordable Care Act. Lobbied to get these regulations passed. And she has definitely employed unusual or unorthodox techniques, like Super Bowl ads, like painting murals, like hosting parties and concerts for health staff and health policy people in D.C. And I think she’s also lobbying for the codification of these transparency regulations.

And it is a little wonky, but I think her frustration is that she lobbied so hard to get these price transparency regulations and everyday people don’t even know that it should be available for them. And obviously academics disagree over how useful that information is for everyday people. But I think she has just taken it upon herself to do the PR campaign for these regulations that she believes could help people make more educated decisions about care that isn’t necessarily emergency care, like MRIs, that kind of thing. So she’s been around for years and has been very active.

I think Fat Joe is another celebrity that she’s brought onto the case. Jelly Roll — I hadn’t seen him do an event with her before or an ad. But I think there’s an ever-expanding cast of celebrities where this is just … it seems like a pretty noncontroversial issue. So I mean, Busta Rhymes, like French Montana, there’s been a lot of people involved in this campaign and I expect it to be ongoing.

Rovner: I feel like she’s kind of the Mark Cuban of price transparency, where Mark Cuban is all into drug prices. Alice, you want to add something?

Ollstein: Well, it’s just funny to me because, as we’ve discussed many, many times on this podcast, transparency goes not very far in helping actual patients. And so it’s funny that a group called Power to the Patients is going all in on this issue when, as we know, the vast majority of health care people need they cannot shop around for and, even when they can, it’s not something people are always able or willing to do.

And so transparency gets a lot of bipartisan support and sounds good in theory, but we’ve seen in terms of what’s been implemented so far in terms of hospital prices, et cetera, that it doesn’t do that much to bring down prices or empower people.

Rovner: Although, I don’t know, getting famous people to care about health policy can’t be a terrible thing. Lauren, did you want to add something too?

Weber: No, I just wanted to say, I mean, I will say as much as we’re all clear on price transparency, what this all means, the Super Bowl is a new audience. So, I mean, if you’re going to spend your money, at least you’re spending it — and that was the most watched TV program, I believe, of all time — so you’re spending it in a way that you’re getting some eyeballs on it.

Rovner: All right, well, that was not the only ad. Next, a company that clearly did pay for its ad was Pfizer, which used a soundtrack by Queen and talking paintings and statues to celebrate science and declare war on cancer. This is also one I don’t think I had seen before. I mean, what is Pfizer up to here? I mean, obviously, Pfizer can afford a Super Bowl ad. There’s no question about that, but why would they want to?

Cohrs: I mean, Pfizer has not been performing great financially lately. And I think they pulled out of the lobbying organization biome and chose to spend money on a Super Bowl ad, which I think is a really interesting choice. I mean, I don’t know what the dues are, but a Super Bowl ad is an expensive thing.

And I think there has been this attack on science, as a whole, and I think there’s an outstanding question of how to rebuild trust. And I think that this was Pfizer’s unorthodox tactic of trying to equate themselves with more credible, historical scientists who are less controversial. Yeah, my colleague did a good story on it.

Rovner: Yeah, like Einstein.

Cohrs: Right.

Rovner: Well, we’ll link to all of these ads. If you haven’t seen them there, they’re definitely worth watching. Well, finally, and in keeping with the occasional politics that does creep into Super Bowl ads, the super PAC supporting the presidential candidacy of independent anti-vaxxer Robert F. Kennedy Jr. paid $7 million for an ad that was basically a remake of the 1960 ad for his uncle John F. Kennedy, when he was running for president, which provoked an outcry from several of his Kennedy cousins who have repeatedly disavowed RFK Jr.’s candidacy and his causes.

For his part, the candidate apologized to his family members and said he didn’t have anything to do with the ad directly, because it was the super PAC. But then he pinned it to his Twitter profile, where he has more than 2½ followers. I can’t help but wonder if they’re going after football fans who actually believe the whole Taylor Swift-Travis Kelsey thing is a conspiracy.

No comment on Robert F. Kennedy Jr. and pissing off his entire family? We will move ahead then.

Speaking of conspiracy theories, in “This Week in Health Misinformation,” we have — drum roll — blood transfusions. Seems that there are a significant number of people who believe that getting blood from someone who has been vaccinated against covid, using the mRNA vaccines, will somehow change their DNA or otherwise harm them. And state legislators are listening.

In Wyoming, a state representative has introduced a bill that would require the labeling of blood from a covid-vaccinated donor. So prospective recipients could refuse it, at least in nonemergency situations. And in Montana, there’s a bill that would go even further, banning blood donations from the covid-vaccinated. That one appears to not be going anywhere, but this could have serious implications. It would create blood shortages, I imagine, even in rural areas where fewer people are vaccinated than in some of the urban areas. But I mean, this strikes me as not an insignificant kind of movement.

Ollstein: Well, it seems troubling on two fronts. One, we already have blood shortages and we already have dangerously low vaccination rates and not just covid vaccination rates. The hesitancy and anti-vax sentiment is spilling over into routine childhood vaccinations and all kinds of things.

And so I think anything that appears to give that sort of stigma and conspiracy a veneer of credibility, like state law for instance, threatens to further entrench those trends.

Rovner: All right, well, that is this week’s news. We will do our extra credits in a minute, but first, as promised, we have the winners of the KFF Health News “Health Policy Valentines” contest. This year’s winner, and we will post the link to the poem and its accompanying illustration, is from Jennifer Reck.

It goes, “Darling, this Valentine’s Day, let’s grab our passports and fly away to someplace where the same drugs cost a fraction of what they do in the States.” I have asked the panel to each choose a finalist of their own to read. So, Lauren, why don’t you start?

Weber: “The paperwork flirts with my affections, a dance of denials, full of rejections. My heart yearns for you, my sweet medication, but insurance insists on prior authorization.”

Rovner: And who’s that from?

Weber: That’s from Sally Nix. Excellent work, Sally.

Rovner: Alice.

Ollstein: OK, I have one from Kara Gavin. It’s “My love for you, darling, is blinding / Like a clinical trial pre-findings / But I fear we shall part / And I’ll lose my heart/ Because of Medicaid unwinding!” Very topical.

Rovner: Very. Rachel.

Cohrs: OK, this is from Andrea Ferguson. “Parental love is beautiful and guess what makes it stronger? A paid parental leave policy to stay with baby longer.”

Rovner: Very nice. Thank you all who entered. And we’ll do this again next year. All right, now it is 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: I have a piece from my colleague Arek Sarkissian, down in Florida, and it is about how the state’s immigration law is deterring immigrants from seeking health care. And one of the areas they’re most concerned about is maternal health care. We already are in a maternal health crisis and the law requires hospitals that receive Medicaid funding to ask people about their immigration status when they come in for care. What a lot of people don’t know is that they don’t have to answer, but this fear of being asked and potentially being flagged for deportation enforcement, et cetera, is making people avoid care. And so there’s just a lot of concern about this and a lot of attempts to educate folks in the immigrant community. Obviously, Florida has a very large immigrant community. And it just reminded me of the fears that were happening early in the pandemic when the public charge rule under Trump was in effect and it was deterring immigrants from seeking care.

And in the middle of a pandemic, when we’re dealing with an infectious disease that doesn’t care if you have citizenship or not, having a large segment of the population avoid care is dangerous for everyone.

Rovner: Indeed. Lauren.

Weber: So I chose an article titled “Climate Change Has Hit Home Insurance. Is Health Insurance Next?” by Yusuf Khan in The Wall Street Journal. And, I mean, look, the insurers are — they’re looking out for their bottom line. And the bottom line is that climate change does have health impacts. So the question is, will that start to hit premiums? The sad answer, in part of this article, is that, unfortunately, the people often most affected by climate change don’t have health insurance. So that may not affect premiums as much as we expect, but I think this is a really fascinating test case of how when climate change comes for your money, you’ll start to see it validated more. So I’ll be curious to see how this plays out with the various health insurers.

Rovner: Yeah, obviously, we’re already seeing people not being able to get home insurance in places like Florida and California because of increasing fires and increasing hurricanes and increasing flooding in some places. Rachel?

Cohrs: So mine is a package deal. It’s two stories related to private equity investment in health care. The first is a piece in Modern Healthcare by Nona Tepper on a Medicare Advantage report by the Private Equity Stakeholder Project. And it just kind of highlighted the downturn in investment in Medicare Advantage, like marketing companies and brokers, consultants.

And I thought it was an interesting take because, I think so often, we see reporting about how private equity is expanding its investment in a certain sector. But this, I think, was an interesting indicator where, oh, it’s turning downward so dramatically. And I think that it’s interesting to track the tail end of more regulation or whatever rule comes out. How does that impact investment? And we talk a lot about that in the pharmaceutical space. But I thought this was a great interesting creative take on the Medicare Advantage side of things.

And also just highlighting some reporting from my colleague Bob Herman about the FTC doubling down on the Welsh Carson’s anesthesia case to limit private equity’s physician buyouts. So the FTC is taking on Welsh Carson, a powerful private equity firm, and other private equity firms asked for the case to be dismissed. And Bob does a great job breaking down these really complicated arguments by the FTC as to why they’re not backing down. They’re not going to cut a deal, they want this case to go forward.

So it will be interesting to watch as this develops, but I think Bob makes a great argument. There are applications for other cases as well and for the FTC and being able to attack these complex corporate arrangements where they’re using subsidiaries to drive prices up for physician services and other things. So definitely worth a read from Bob.

Rovner: Yes, another theme of the Federal Trade Commission getting more and more involved in health care in general and private equity in health care in particular. My extra credit this week is from Stateline by Anna Claire Vollers, and it’s called “Government Can Erase Your Medical Debt for Pennies on the Dollar — And Some Are.” It’s about how a growing number of states and cities are buying up and forgiving medical debt for their residents. Backers of the plans point out that medical debt is a societal problem that deserves a societal solution. And that relieving people’s debt burdens can actually add to economic growth. So it’s a good return on a small investment. It’s obviously not going to solve the medical debt problem, but it may well buy some government goodwill for some of the people of these states and cities.

All right, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our technical guru, Francis Ying, and to Stephanie Stapleton, filling in this week as our editor. 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, or @julierovner at Bluesky and @julie.rovner at Threads. Lauren, where are you these days?

Weber: Still just on Twitter @LaurenWeberHP, or X, I guess.

Rovner: Alice.

Ollstein: On X @AliceOllstein and on Bluesky @alicemiranda.

Rovner: Rachel.

Cohrs: I’m @rachelcohrs on X and also getting more engaged on LinkedIn lately. So feel free to follow me there.

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

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

The Supreme Court in March will hear oral arguments in two very different cases that boil down to the same question: How much power do “experts” in health and science deserve? At stake is the future accessibility of the abortion pill mifepristone, and the ability of government officials to advise social media companies about misinformation.

Meanwhile, abortion opponents are preparing action plans in case Donald Trump retakes the White House. While it’s unlikely Congress will have enough votes to pass a national abortion ban, a president can take steps to make abortion far less available, even in states where it remains legal.

This week’s panelists are Julie Rovner of KFF Health News, Sandhya Raman of CQ Roll Call, Joanne Kenen of Johns Hopkins University and Politico Magazine, and Sarah Karlin-Smith of the Pink Sheet.

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Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

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Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories.

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories.

Among the takeaways from this week’s episode:

• Abortion opponents are preparing for the possibility of a second Trump presidency. Among ways the former GOP president could influence policy without Congress is by installing an activist secretary of Health and Human Services, possibly allowing a political appointee to overrule decisions made by FDA employees.
• While President Joe Biden is embracing abortion rights, Donald Trump is highlighting two conflicting truths: that he appointed the Supreme Court justices who helped overturn the constitutional right to an abortion and that embracing abortion restrictions could drive away voters.
• The federal government is making its initial offers on 10 expensive pharmaceuticals targeted for Medicare price negotiations. But the process is private, so it is unknown what those offers are.
• Two pharmaceuticals that have been in the headlines — the controversial Alzheimer’s disease drug Aduhelm and the insulin Levemir — will soon be pulled from the market. The decisions to discontinue them play into an ongoing debate in drug development: When is innovation worth the price?
• “This Week in Health Misinformation” features an article by KFF Health News’ Amy Maxmen about how what once were fringe views questioning science are now becoming more mainstream.

Also this week, Rovner interviews Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” feature, about a husband and wife billed for preventive care that should have been fully covered. If you have an outrageous or confounding medical bill you’d like to share with us, you can do that here.

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

Julie Rovner: ProPublica’s “Amid Recall Crisis, Philips Agrees to Stop Selling Sleep Apnea Machines in the United States,” by Debbie Cenziper, ProPublica, and Michael D. Sallah, Pittsburgh Post-Gazette.

Joanne Kenen: The New York Times’ “Elmo Asked an Innocuous Question,” by Callie Holtermann.

Sarah Karlin-Smith: The Texas Tribune’s “Texas Attorney General Requests Transgender Youths’ Patient Records From Georgia Clinic,” by Madaleine Rubin.

Sandhya Raman: The Associated Press’ “Community Health Centers Serve 1 in 11 Americans. They’re a Safety Net Under Stress,” by Devi Shastri.

Also mentioned on this week’s podcast:

• Politico’s “The Anti-Abortion Plan Ready for Trump on Day One,” by Alice Miranda Ollstein.
• The 19th’s “The Tools Trump Cold Use to Curb Abortion Access if He’s Elected,” by Shefali Luthra and Mel Leonor Barclay.
• The New York Times’ “How Trump Could Institute a Backdoor Federal Abortion Ban,” by Mary Ziegler.
• CQ Roll Call’s “GOP Pivots on Abortion Stance as 2024 Nears,” by Ariel Cohen and Sandhya Raman.

click to open the transcript

Transcript: The Struggle Over Who Gets the Last Word

KFF Health News’ ‘What the Health?’Episode Title: The Struggle Over Who Gets the Last WordEpisode Number: 332Published: Feb. 1, 2024

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We are taping this week on Thursday, Feb. 1, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go.

We are joined today via video conference by Joanne Kenen of Johns Hopkins University and Politico Magazine.

Joanne Kenen: Good morning, everybody.

Rovner: Sandhya Raman of CQ Roll Call.

Sandhya Raman: Hello, everyone.

Rovner: And Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Morning.

Rovner: Later in this episode, we’ll have my interview with KFF Health News’ Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month.” This month’s patient — actually, patients — got unexpected bills for care that should have been fully covered.

Before we get to this week’s news, it is February, so that means we want your health policy valentines. We will put a link to submit in our show notes. It’s on our web page at kffhealthnews.org. Show us, and your valentine, your affection for nerdy health policy topics. Winners will get read on the podcast and shared on our webpage and social media. The top poem will get its own illustration by our amazing in-house artist, Oona Tempest, so get those entries in.

OK, now the news. We will start this week in federal court where March is starting to look like “Health Policy Month.” At the 5th Circuit in New Orleans, judges will hear arguments in the case Braidwood v. Becerra, which challenges the very popular provision of the Affordable Care Act that requires insurers to cover a long list of preventive services at no out-of-pocket cost to patients. Fun fact: This is the provision in question in the latest “Bill of the Month,” which you will hear about in a few minutes. Another fun fact: The lower-court decision in this case came from Judge Reed O’Connor, whose name might sound familiar because he was the judge who tried to strike down the entire Affordable Care Act back in 2018. Somebody remind us why the plaintiffs here think the preventive services mandate is unlawful and should be stricken?

Raman: One of the issues that they have in this case is that certain types of this preventative care are in question — so, some of the things related to women’s health, vaccines, PrEP for preventing HIV, and just the moral issues that they have that those things do not necessarily need to be applied to under their plan. It’s some of those things in particular that come up.

Rovner: Yeah. I think in this case it seems to be mostly PrEP. It seems to be mostly about not wanting to encourage homosexual behavior, as the plaintiffs are saying, which is a rerun of what we had with the birth control cases, which went on, also for this provision of the ACA. No matter what happens in this case, Braidwood is sure to be appealed to the Supreme Court, which already has two health-related cases set for March oral arguments.

On March 18, the justices will hear Murthy v. Missouri, which challenges the government’s ability to coordinate with social media companies to downplay medical misinformation. The attorneys general of Louisiana and Missouri are arguing that the Biden administration essentially worked to censor conservative views. The Murthy in this case is Surgeon General Vivek Murthy, on whose behalf the Justice Department called the lower-court ruling seeking to bar communication between the White House and federal health agencies with social media companies, quote, “novel, unbounded, startling, radical, and ill-defined.” This could be a really important case for those trying to rein in medical misinformation, right? I mean, it’s obviously a really delicate thing. What serves as medical misinformation when the government gets to say, “Really, it should be at least de-algorithming,” if that’s a word, “this stuff because it’s not correct.”

Karlin-Smith: Right. I think one of the questions here is was the government collaborating and just sort of discussing and flagging these concerns to the companies, or did they exercise some sort of undue leverage here? Which is a big debate. Obviously, a private company has different ability to also regulate speech on its platform than the government does. So that’s another element to the case. I think sometimes people get confused about what your free speech rights are when you’re not directly dealing with the government in the U.S.

Rovner: Yes, there’s no guaranteed free speech in a private space like social media. I mean, they are not government-run. Although, I guess one of the arguments here is that they may be government-involved. I guess that’s what this case is supposed to try and create the guidelines for, but it’ll be … I’m looking forward to actually listening to these oral arguments.

Well, the following week, on March 26, the Supreme Court will hear the case FDA v. Alliance for Hippocratic Medicine, which is the one where conservative doctors challenged the original year 2000 approval of the abortion pill mifepristone. Technically, the justices are no longer considering canceling the original approval. They’re considering rolling back the FDA’s loosening of restrictions on the drug in 2016. But still, that alone could be a big deal, right? Sandhya, you’ve been following this, have you?

Raman: Yeah. Yeah. The Supreme Court decided at the end of last year that they would be taking up the case. So this week they set the actual oral arguments that we can look forward to. That’s going to be the first big abortion case that they’re going to hear since Dobbs. We have another abortion case coming up in April related to emergency health care. I think that it is interesting that it’s not over the full approval of the drug, it’s the regulations, but if you …

Rovner: Well, that’s because the 5th Circuit rolled back the original decision.

Raman: Yes. But I think that if you look at how much the regulations have changed since the original approval, there’s been a lot of expansion in just how it can be used, who can prescribe it, where it can be used, that kind of thing. So even if they were to rule to rescind some of those regulations and keep the original approval in place, that could have a huge effect in terms of who can get it. I mean, since the initial approval, we’ve been allowed to distribute it by mail, we’ve been allowed to do by telehealth to prescribe it. Just the length into pregnancy that it can be used, there’s been a lot of changes there. So we’ll have that to watch. The briefs have all started coming in, at least in favor of keeping the regulations as they are. We’ve had a huge lawmaker brief from a lot of Democrats. We had one from a lot of the pharmaceutical companies, including some big ones like Pfizer and Biogen.

Rovner: Yeah. I noticed in the PhRMA brief — or the pharmaceutical companies’ brief; I don’t believe it was from PhRMA the organization yet. But they did say that they were worried that if the court even were to uphold the 5th Circuit decision, which doesn’t cancel the approval but would cancel all of the changes since 2016, that that would basically freeze in place the use of drugs as we discover new uses for the same drugs. I mean, if you can’t relabel and put them out in a different way for different things, that would be a big hit to the drug industry, which, Sarah, spends a lot of time repurposing existing drugs, right? That’s a big part of drug development.

Karlin-Smith: Right. Improving upon a drug once it gets approved, expanding the label to treat different conditions is a big thing. The underlying tension for the pharmaceutical industry here is that there is a concern that this is the courts weighing in on sort of questioning the scientific judgment of the FDA in a way that would just make our whole drug approval regulatory system not function well for the industry, regardless of whether you’re talking about an abortion drug or a cancer drug or an arthritis drug. That’s really why there’s so much engagement from folks who are not necessarily here to argue about abortion politics. It’s just this concern that there’s certain scientific expertise and deference that we feel like the FDA should have, and that there’s concern that courts don’t really have that ability to accurately second-guess their judgments there.

Rovner: This really harkens back to what we’ve been talking about for the last couple of weeks with this big Supreme Court case on Chevron deference, which is basically the question of whether judges get to decide how to interpret federal laws or whether courts get to decide. This obviously would be a big deal because judges are not generally people with the expertise that doctors and scientists at the FDA have, right? Isn’t that sort of a big piece of this case too?

Kenen: Yes. We know that this particular court is anti-abortion. If they had just sort of a birthday cake wish, they would make the abortion pill go away. The question is where are they going to come down on who gets to decide? Is this an FDA decision or is this a legal decision elsewhere in the system? That’s the mystery. We really don’t know. In some ways, too, with the prior case we were just talking about, about preventive care, the USP has a lot of … the U.S. Preventive …

Rovner: Services Task Force.

Kenen: Who decides? What’s their authority? Which is part of the underlying legal battle in that case. So, are they anti-abortion? Yeah. Six, we know, are. Are they anti-FDA? Are they going to find some legal rationale for pulling this out of the FDA, with leaving other drugs in the FDA? That’s sort of part of what we’ll be watching for. Not just us. I mean, that’s what it comes down to.

Rovner: I was going to say, even the social media case, I mean, all of these cases are basically about scientific expertise and who gets to have the last say on questions of science and medicine. I mean, literally, all of these cases are about the same thing when you come right down to it.

So while we are on the subject of abortion, former South Carolina governor and, still, Republican presidential candidate Nikki Haley has been dodging questions about a federal abortion ban by pointing out that if neither party has 60 votes in the Senate, nothing can pass. Which is true as long as there’s still a filibuster. Well, it seems that the anti-abortion movement took that as a challenge. Two of our podcast colleagues, Shefali Luthra and Alice [Miranda] Ollstein, have eye-opening stories this week about all the things that President Donald Trump could do, if he’s elected again, without Congress. Some of those are things that he did in his first term that President Biden reversed, but some are new ones too. They’re already vetting people to carry out those policies. It looks like they want to be ready on day one. At least the anti-abortion forces want to be ready on day one, to do kind of a full-court press on anything that they consider to be abortion related.

Raman: Yeah, I think there have been, in the past, some of these policies that have gone back and forth between each administration. So something like Title X, the family planning program. Depending on if we have a Democrat or a Republican in office, they change what some of the regulations are there, but then …

Rovner: They basically kick Planned Parenthood in or out.

Raman: Yeah, things like that. Or like the Mexico City policy, which does something in a similar … but for overseas funding. And we’ve had also a ton of different new regulations since the Dobbs decision, in the Biden administration making it a little easier if you are, in certain cases, needing an abortion and are in the VA, in the Defense Department, things like that, that have been big issues for a lot of Republicans. So they would also have to — it’s more of a new territory to figure out how to roll back some of those compared to some of the things that they have a standard plan on.

But if you look at both of our podcast colleagues’ stories, one that stuck out to me was just kind of how they would have the FTC [Federal Trade Commission] try to crack down on abortion by mail, which comes back to the court case we were just discussing, abortion medication, abortion. And just how you could reinterpret some of the existing regulations that we do have regardless of what happens at the Supreme Court.

Karlin-Smith: I was going to say one thing that really stuck out to me in one of The New York Times pieces about this was how even the Trump administration could basically have their HHS [Department of Health and Human Services] secretary override FDA decisions, because we sort of forget that, actually, the way Congress has written a lot of the laws, actually, the HHS secretary has that ultimate authority around drug approvals. We just sort of take it for granted, I think, that for the most part they delegate that to FDA and the political appointees stay out of it. That’s another thing they raise is you could have sort of a more activist HHS secretary that could interfere with what does or doesn’t get approved by FDA. So there’s some pretty norm-ending ideas there for the government.

Rovner: I will say that I do remember Kathleen Sebelius came in and overrode an FDA … about contraception coverage decision. President [Barack] Obama made it clear that he asked Secretary Sebelius to override the FDA, but I think that was more to protect the FDA. Made it clear that this was a policy decision, not a medical decision. I know that they struggled with that a lot. For exactly the reason that you’re saying, that they didn’t want this to become normal, to have the secretary override the decision of the FDA.

Kenen: But that was a big controversy and someone at the FDA quit over it. I think it was the women’s health person. In that case, it was narrow. It was about, if I’m remembering correctly, Julie has a, sometimes, better memory, it was under-18 access to the morning-after pill, right? It was about 10 or 12 years ago.

Rovner: It was 2011 because it was the night my dog had her leg surgery and I had to come back to the office at 1 in the morning because we didn’t think that the secretary was going to override this decision.

Kenen: No, I said 10 to …

Rovner: I remember it really vividly.

Kenen: … 10 to 12 years ago. Yes, it was, then, 12 years ago. There hasn’t been a high-level repetition of that that I can think — of a HHS override. I mean, that’s one reason why the former FDA commissioners maybe … Julie, you and I were both at Aspen that year. It was maybe eight years ago or nine years ago where all the former FDA commissioners came together and called for the FDA to become an autonomous agency, sort of like the SEC [Securities and Exchange Commission], which was a proposal that then fell in a pond and was never heard from again. But that would prevent that kind of political interference. I mean, I actually spoke to a former FDA commissioner sort of recently and said, “Whatever happened to that?” And he said, “Wait.” So apparently they haven’t totally forgotten. We’re going to see reiterations of this fight over absolutely everything for the indefinite future: Who gets to decide?

Rovner: Yeah, I do think, like I was saying, that this is basically all about who gets to make medical and scientific decisions and whose, quote-unquote, “opinion” holds. Well, before we get off of this totally, both Alice’s and Shefali’s story, and an op-ed by University of California-Davis law professor Mary Ziegler, who’s also been on this podcast, talk about the revival of the Comstock Act. We have talked about this before and we surely will again, but somebody remind us what this 1873 law does and how it could be applied to abortion.

Karlin-Smith: In simple terms, it’s to prevent sending what are considered, quote-unquote, “obscene materials” through the mail. What that can refer to has been interpreted in different ways over the years. I mean, some of the … when it’s from the 1800s, it’s before we had medication abortion. It’s before we had the internet and telemedicine and all of these things. So there’s a lot of room that people have seen for just how it can be reinterpreted now with a lot of different things in place compared to over a 100-and-some years ago, and just how that can work in certain favors.

Rovner: I think I’ve said this before, now that we’re talking about the Comstock Act again, I realize that Anthony Comstock, who it is named after, was not a member of Congress. He was just an anti-smut crusader, basically. I believe the phrase, “You can’t send anything lewd or obscene through the mail.” This would be how they could sort of use it to say that anything abortion or possibly even contraception could be lewd or obscene. With all of this, that the Republicans are getting ready, or at least the anti-abortion groups are getting ready to do, Sandhya, you have a story out this week pointing out that abortion is not something Republicans are emphasizing on the campaign trail. Why not? There seems to be an awful lot of enthusiasm on that side.

Raman: It is pretty interesting. I mean, even if at this point it’s looking like we’re going to have the Round Two of the Trump-Biden matchup, if you look at how Trump, and then even Nikki Haley, have been messaging, all their ads, all that, they have not been as strong on anti-abortion issues as they have in the past. They’re both people that — both of them I’ve covered addressing annual Susan B. Anthony List events. I’ve covered March for Life where Trump has addressed them. They’ve both been very strong on this issue. And then, as you look at it now, neither of them have been really strong on committing to signing a national ban. Haley has really sidestepped the issue in a lot of the interviews that she’s done, just because, like you said, the Senate filibuster. I think even Trump has … they’ve been messaging on him being the most pro-life president that they’ve had. He’s just kind of sidestepped it as well, just kind of emphasizing other things. If you look at the advertising they’ve been doing, it’s not focused on this. It’s such a stark contrast to what the Biden campaign has done, which has really gone all in on abortion rights. They even had an all-reproductive-rights-themed rally a couple weeks ago.

Kenen: When Trump did the town hall on Fox, two, three weeks ago, whenever that was, he had it both ways, which meant that there’s a film clip to use whoever you’re advertising to. Within a minute and a half or two minutes or whatever it was, Trump took credit for knocking down Roe. He took credit for … “I accomplished that.” In other words, he appointed the justices or some of the justices that voted for that. So he took credit for finally being the one to get rid of abortion after 50 … get rid of Roe after 50 years. He was very …

Rovner: Which is true.

Kenen: It’s true. Well, both things he said were true because he took credit for that. So there’s your film clip one for that ad, or that message, or that social media, or whatever, direct mail. Whatever you want to use it for. It’s “I am the one.” And it’s true. And then, in the next breath, he said, “But we have to win elections.” He’s also said he’s for a … is it rape and incest or just rape? I think it was both. He’s for that exception. And then he talked about, “Face reality, we have to win.” Which is also a true statement if you’re running for president. You have to win or you don’t get to do these things that you’ve promised. So, I mean, he’s not the first politician or the last to try to have it both ways. It was interesting that he had it both ways, both accurately, in a two-minute conversation.

Rovner: Not that uncommon for him, though …

Kenen: No, but …

Rovner: To take both sides of an issue at the same time.

Kenen: He was so unabashed about it, it was sort of interesting that, “I did this, but maybe I won too much. Maybe it wasn’t …” I mean, at the polls, abortion has won.

Rovner: Yeah.

Kenen: Anytime there’s been a single-issue vote on abortion, the pro-choice people have won every ballot initiative since Dobbs.

Rovner: Yeah. And yet the other ironic thing, I mean, Sandhya, you already mentioned this, that the Biden administration is going all in on abortion because they know that Democratic women and independent women in most polls are supportive of abortion rights and not supportive of the Dobbs decision. On the other hand, Biden himself is an unlikely messenger for this. He’s a Catholic man of a certain age. He’s always been uncomfortable with this issue. He was pro-life early in his career. There was a joke that he didn’t even say “abortion,” I think, until a year into his presidency. There was an actual website that said, “Has Joe Biden said the word abortion yet?” So is he going to be able to bring along all of these people because they’re just going to, “If you support abortion rights, you’ll just vote for anybody not named Donald Trump”?

Raman: I mean, I think that we’ve already seen some of these different abortion-oriented groups really mobilize or kind of illustrate, commit how much money they’re going to spend, all the on-the-ground stuff they’re going to do to get him reelected. They have called out some of the things that he’s done, some of the regulations we’ve already talked about, that kind of thing. But I do get the sense that some of them are frustrated that we haven’t done enough. But I mean you could say the same for the other side. There’s always more that people want. Given the limitations of government when you don’t have the trifecta, and even when you do have the trifecta, if you don’t have enough of a majority to get some of your golden-ticket items done. So I think that it will be interesting to watch. I mean, we even, going forward, for the State of the Union coming up, they’ve already announced that they’re going to have … one of the guests is Kate Cox, the Texas woman who had to travel when she wasn’t able to get the court order to get the emergency abortion.

Rovner: Yeah.

Kenen: I mean, it’s a turnout issue. We know that voters are not enthusiastic about either candidate. We know that, right? I mean, will that change as the election gets closer? Who knows? But right now, many polls are finding that America’s not crazy about this particular rematch. So what are the issues that motivate people who are lukewarm to actually vote? This is going to be on both sides. This is going to be an issue, but the intensity in many ways is going to be on the Democratic side because they’re, just like it used to be, the one fighting for change. The one on the out is the one more likely to have that voter intensity. For 50 years, it was the Republicans. For the last 18 months, it’s been the Democrats. Vice President [Kamala] Harris has been talking about this. A lot of the other surrogates are talking about this. So this is a “Will this make you get out of whatever else you were going to do that Tuesday, or early vote, and actually vote?” It’s going to be one of the key issues in turnout.

Karlin-Smith: I think that’s a great point, that that is another reason why there’s so much Republican messaging on some of these other issues, on immigration, on crime and things like that. Because when it’s not a single-issue thing like the ballot — they’re still winning tons of races for governor and things like that. Maybe focusing on those issues might be good for them to boost some of the turnout.

Rovner: Well, another big issue that voters care about is drug prices. We actually have a lot of drug news this week. The federal government, just this morning, sent out its first set of proposed prices for the 10 drugs they have selected for Medicare price negotiation. Of course, they’re not telling us those prices because this is a private negotiation. But Sarah, did anything jump out at you from what they’ve said about kicking off this process?

Karlin-Smith: I think right now what the Biden administration is trying to do is just sort of publicize that this process is happening. Because again, this is a big political issue, an election thing that they’re hoping will motivate voters. But at the same time, it’s a little bit of a dud in some ways because the government can’t say what they’re offering and the companies don’t necessarily seem inclined to put out any information on this yet. So it’s going to be a pretty private process, potentially all the way up until this fall, in September, when we’ll get some public information. But I think the Biden administration just wants to keep ramming it into voters’ heads that, “Hey, we’re doing work to try and lower drug prices for people as much as we can.”

Rovner: Of course, the drug industry still hopes that some court will overrule and stop this whole thing, right?

Karlin-Smith: Right. There was actually oral arguments yesterday in one of the challenges from AstraZeneca to … that they’re hoping courts will intervene. I think some of the initial reporting from that was that the judge was fairly skeptical of some of AstraZeneca’s arguments, such as that there’s sort of a due process or taking of property that the government is not allowed to do here. The judge was basically saying, “Well, nobody is forcing you to participate in the Medicare program and sell your drugs there.” So some initial, at least, positive signs for the government in those oral arguments.

Rovner: Yeah. Although, as we know, they have a long way to go. In the individual-drug news category, remember when we were talking all about the controversial Alzheimer’s drug, Aduhelm, pretty much every week? Well, it is back and it’s sort of gone, or going, at least. Drug company Biogen is giving up ownership and prematurely ending a trial that was supposed to confirm the drug’s effectiveness in treating early Alzheimer’s. Sarah, you followed this from the very beginning. What do you take away from this whole saga? I mean, at one point, Aduhelm was going to be the answer, and then it was going to break Medicare because it costs so much. And then it was going to make people sick because it had side effects. And now it’s just going away.

Karlin-Smith: There’s so many layers to this story, but the quick version of it is, basically, FDA sort of controversially approved this drug over a lot of skepticism of whether it was actually going to be beneficial to patients. They use sort of a controversial measure that the drug reduced these amyloid plaques in the brain, but there were a lot of questions, including by outside scientists and so forth, as to whether this would actually improve the lives of patients with Alzheimer’s in terms of helping them function and memory. There’s a lot of side effects to the drug. Of course, the third layer of this is it was priced quite costly. What ended up happening was Medicare said, “We will only cover this drug at this point in time if it’s used in a clinical trial.” Part of what happened, I think in large part because of that, is there was no uptake of this product, no sales. That’s really why Biogen has pulled the plug here. The other element of this is that Biogen also has another Alzheimer’s drug that was approved fairly shortly thereafter that actually has better data to show there’s some benefit in actually improving people’s cognition. So again, they’re not necessarily invested in pushing forward a drug where they face all these payment challenges and have less solid data. The question now becomes, what does FDA do here? Do they officially go through the process and make sure … force Biogen to pull it off the market? What do they do about this clinical trial that they were supposed to be conducting to confirm the benefit? And what does science lose if that just gets stopped? I’m not sure if anyone will feel like there’s a need to complete that at this point. But it does raise interesting questions to me because I think about 1,500 or something patients were actually already enrolled in participating in that study.

Rovner: But I do think it’s important to emphasize that since Aduhelm was sort of all the rage, the big debate, we actually are finally seeing some drugs that do appear to have more benefit than cost for early Alzheimer’s. I mean, not a cure, but at least a slowing of the deterioration, right?

Karlin-Smith: I guess I think people are sort of cautiously optimistic about these drugs. They’re excited. Nobody thinks these are the holy grail yet of Alzheimer’s treatments. I think even some of the CEOs of the companies working on them have acknowledged that, but they do seem to offer some benefit. Again, there’s still a lot of these brain-swelling safety events that can be fairly devastating. So I think people are going to be watching really closely. Because usually what we know when a drug is initially approved is a fraction of what we end up knowing over time. So I think it’s still early days, but there is some hope that we finally sort of maybe cracked the code on some of the mechanisms of action of how to treat Alzheimer’s.

Kenen: Like with other drugs in cancer, elsewhere, sometimes you just need the first-draft drug. Hopefully, this isn’t the best we’re going to get. These new drugs that are showing some promise and some slowing down is sort of a proof of concept. Yes, you can make a drug that works. In other fields, too, you ended up … the first drug wasn’t a great drug, but it was a leap ahead in terms of understanding the science. So the fact that we have anything that does anything, scientists do consider that they don’t really understand Alzheimer’s, but it matters that there’s some effect. It’s not next week or next year, but there’s a goal that you can see. I think if you’re an Alzheimer’s researcher who’s spent their life not seeing a lot of tangible results, this is like a glimmer. Maybe more than a glimmer. I mean, this is like, “OK, we’re learning how to do this.”

Karlin-Smith: That was actually one of Biogen’s arguments, I think, for why Aduhelm should have been approved in the first place. Maybe even some folks at the FDA basically saying, “Look, we know this maybe isn’t the home run, but if you don’t approve these products, people are just going to leave this space and not invest in it and not keep trying to bring forth drugs.” I mean, there are people that vehemently disagree with that argument, that that’s the best way to encourage the right innovation for this country, but that wasn’t an argument you saw from industry and even some at the FDA, I think.

Kenen: But I wasn’t talking about Aduhelm specifically. I mean, the other ones that are in the pipeline that are coming out. I mean, it’s new and we don’t really know much about them yet. But the past Alzheimer’s drugs were basically useless or really limited use. These might be what we will later look back on as the first draft as opposed to another failure.

Rovner: I want to move on to another drug that’s being discontinued. European mega drugmaker Novo Nordisk has announced its ending production of a long-acting insulin, Levemir — I think that’s how you pronounce it — that, coincidentally, is one of the insulins that it slashed prices on last year under pressure from lawmakers. The announcement came the same week the company announced it would double the availability in the U.S. of its blockbuster weight loss drug, Wegovy, and the same week that the company hit $500 billion in market value. While there are substitutes for the insulin, for Levemir, many of its patients say this particular product is the best one for them, and there isn’t a one-to-one substitute. I guess this is a reminder that for drug companies, the prime goal is turning profits for their shareholders. I mean, they’re making a lot more money off of these weight loss drugs than they are off their diabetes drugs. We know that the weight loss drugs were in shortage because they couldn’t make enough of them. So you don’t have to be really good at math to kind of put two and two together here, right?

Raman: Right. I’m not sure they’re necessarily even hiding that fact, to some degree. They basically lowered the prices of a lot of these insulin products because of changes in the Medicaid rebate program, where because these products had their prices raised so much over the years, they were going to be subject to new inflation penalties, where they’d essentially owe Medicaid money if they didn’t lower the price. So now you have these older insulin products with lower prices that don’t make them as much money. And Novo Nordisk, in the insulin space, has innovated over the years and made some improvements. So they want to focus on selling their insulin products that they can sell at a higher price point. But again, you get patients who say, “Look, this older drug, actually, I personally, think works better.” And there’s a benefit to patients that it’s cheaper. This is, I think, an old story in the pharmaceutical space that sometimes is looked upon by lawmakers, which is, they innovate and they push patients onto newer products, but is the innovation really worth the price or should people have some way to choose the older product for the lower price if they think it works fine for them?

Rovner: Speaking of drug company profits, the CEOs of Merck and Johnson & Johnson have voluntarily agreed to testify before the Senate Health Committee — meaning that Chairman Bernie Sanders won’t have to subpoena them after all. The hearing is scheduled for Feb. 8. But it’s not about any specific legislation, this is just a chance for Sanders to lecture the CEOs about their high prices, Sandhya?

Raman: Essentially, yes. I think, also, it’s been such a big issue for him. Even if you look back when we had the various nominees, that they wanted to … that would go through his committee where he said that he really wanted more action on this. So I think it’ll be interesting what he brings up, and if there’s a clear pathway of something to move forward since this has been such a big issue for him for a while.

Rovner: Well, he successfully made me want to watch this hearing. We’ll see how it goes. All right. Well, let us turn to “This Week in Health Misinformation.” In addition to that case that the Supreme Court will hear, that we talked about at the top, we have a story from my new KFF Health News colleague, Amy Maxmen, about how what used to be fringe anti-science views are now mainstream among Republicans in general. Vaccine hesitancy has gone up. And that’s hesitancy even to long-proven childhood vaccines, not just the covid vaccine. While trust in science in general has dropped, according to numerous polls. In Florida, Gov. Ron DeSantis has made public health conspiracies part of his platform. And as a presidential candidate, he said he would’ve considered nominating noted conspiracy theoretician and anti-vaxxer Robert F. Kennedy Jr. to run the CDC [Centers for Disease Control and Prevention]. I’ve certainly seen more pushback in my reporting of things that people used to agree on. I assume you guys have too. I mean, it harkens right back to our original theme of who gets trusted when they talk about science and medicine.

Karlin-Smith: I think one of the interesting things that Amy’s story really points out very well, that people have been talking about a lot since the beginning of the covid era, is that this anti-science or anti-vaccine attitude has really become embedded in people’s personal identity and personal politics in a new way. Once it becomes part of your political identity, the experts are saying, it becomes much harder to change people’s views. That’s seen as one of the key problems right now, because, again, providing facts or just rebutting the information doesn’t seem to work when you’re basically sort of attacking somebody’s core identities and beliefs.

Rovner: Yeah, it’s an interesting subject, how we’re sort of freezing a lot of these things in place.

Kenen: Well, it’s also tied up with liberty and freedom in a way that has been part of the anti-vax movement for a long time, but it was a much smaller thread. Right now, this individual liberty or medical freedom, “You don’t have the right to mandate anything,” that “It’s my body.” Now, that’s fine if it’s really only your body, but when you’re talking about infectious diseases, it’s everybody’s bodies. Anti-vaxxing is across the … there are people on both the left and right who are against vaccination. That has changed in the intensity and the politicization on the right, during covid and since covid, and this medical freedom movement, which is sort of a subsection of libertarianism. We tend to talk about anti-vaxxers and anti-vaccination because that’s the most salient thing in the last few years, but there is a broader distrust of expertise, period. Scientific expertise, medical expertise, everything. I mean, some of you know I’m writing a book. We turned in the first draft this very morning. Misinformation is part of the book, and disinformation. This decline, when I was researching … it wasn’t that America was a really trusting society. I was surprised. Going back in history, we’ve always [had] pretty high distrust rates of many major institutions, but it’s much higher in health, medicine, science, public health right now.

Rovner: It’s not just the U.S. We’re seeing this around the world, basically, since the pandemic.

Kenen: It’s tied into the pandemic. It’s tied into the research of populism, a right-wing form of populism. It’s tied into a whole anxiety. The last few years have been really hard on people. Science didn’t have the answers and quick fixes that people wanted, because science is incremental, and people wanted instantaneous fixes. They didn’t understand the incremental changing nature of science, and scientists didn’t always explain it well enough. So it’s here to stay for the near future. It’s pretty insidious because it’s way beyond vaccines.

Rovner: I’m sure we will talk about it more. Well, that is this week’s news. Now we will play my “Bill of the Month” interview with Samantha Liss, and then we will come back with our extra credits.

I am pleased to welcome to the podcast my colleague Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Thanks for joining us, Sam.

Samantha Liss: Hi.

Rovner: So, this month’s patients, a husband and wife, got some mysterious bills for preventive care that they thought should have been free. Tell us who they are and what they got.

Liss: Yeah. So this month we bring you Chantal Panozzo and her husband. They live outside Chicago. And they underwent their first colonoscopies last year, after turning 45.

Rovner: Then, as we say, the bill came. Now, colonoscopies are very much on the list of preventive services that are supposed to be available at no out-of-pocket cost to patients. So there really shouldn’t even have been a bill. How much was the bill and what was it for?

Liss: Yeah. So their insurance company paid for the screening, but there was a separate $600 charge for something called “surgical trays.” Supplies you’d expect to be covered.

Rovner: Yeah. It’s like saying, “We’re going to charge you rent for lying on our table.”

Liss: Exactly.

Rovner: Chantal Panozzo knew that there shouldn’t be a charge. After getting no good explanation from her insurer or the gastroenterology practice, she went to complain. She went pretty much everywhere she could, right?

Liss: Yeah. Chantal is a savvy consumer, and she was furious. She lodged an appeal with her insurer, she filed a formal complaint with state regulators in Illinois, and she wrote to her elected officials.

Rovner: So what eventually happened?

Liss: She won, but she’ll tell you she did not feel victorious. Her insurer waived the bills for her and her husband, and they didn’t owe anything, but it was a months-long slog. I think seven months in total.

Rovner: Just to be clear, it was actually the insurer that she appealed to, and she won that appeal.

Liss: Yeah. I think part of what helped push that appeal along was her complaint to the Illinois Department of Insurance.

Rovner: So, doing all of those things apparently helped. It turns out that the couple uncovered quite the loophole in the preventive services mandate. What is that and how can others avoid falling into the same trap?

Liss: Yeah. Under the law, the insurer bears the legal burden to pay for preventative care. There’s no requirement on providers to bill a certain way. So I think as we tell all our folks who read and listen to our “Bill of the Month” series, never pay the first bill. Wait until you get your explanation of benefits, and if something doesn’t feel right, ask questions.

Rovner: So basically, people can go in and get care that they expect and should be free and get random charges, and they can complain about those, right?

Liss: Exactly. And I think Chantal’s example shows sometimes you have to fight so hard and for so long to get something waived that you shouldn’t have been charged for to begin with. It’s maddening and it ticks people off.

Rovner: And if all else fails, you can send your bill to us.

Liss: Yes, please do.

Rovner: Sam Liss, thank you very much.

Liss: Thanks.

Rovner: OK, we’re back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Joanne, you have my favorite this week, why don’t you go first?

Kenen: I told Julie that Elmo didn’t want her to get sad if I was going to do this one, and she didn’t. I’m sure almost everybody saw the Elmo phenomenon this week. The particular story that I’m referring to is by Callie Holtermann in The New York Times, “Elmo Asked an Innocuous Question.” And then there’s this wonderful sub-headline, “Elmo was not expecting it to open a yawning chasm of despair.” Elmo tweeted or X’ed, whatever you call it … I mean, it wasn’t really Elmo, it was his human. Elmo is just checking in, “How is everybody doing?” There were tens of thousands of views. Last time I looked, there were more than 16,000 responses. I did not read all 16,000, but people really are not happy. And they told Elmo that. It just became this sort of mass confessional to Elmo of all the things that people were feeling despair about. And then Elmo ended up saying something like, “Wow, Elmo is glad he asked.” So I don’t know if Elmo has now become our national shrink, but to a certain extent this week, he was.

Rovner: Absolutely. Sarah?

Karlin-Smith: I looked at a piece from The Texas Tribune about not quite an amazing topic, maybe. The “Texas Attorney General Requests Transgender Youths’ Patient Records From Georgia Clinic,” by Madaleine Rubin. It basically looks at a trend where Texas seems to be trying to not only control what is happening to the care of transgender children within their state, but trying to maybe intimidate or prevent care from happening out of state by going after telehealth providers, but maybe even trying to request records related to people that have traveled outside of the state to get care because they can’t get it in the state. It reminds me a bit of some of what some of these states are also trying to do in the abortion space as well, but raises interesting questions about whether the state really has the authority to interfere here and so forth.

Rovner: Yeah, Texas is obviously fighting this border issue, too, with the federal government. So Texas is trying to basically see how far it can press its authority, in general. Sandhya?

Raman: My pick this week is called “Community Health Centers Serve 1 in 11 Americans. They’re a Safety Net Under Stress.” It’s from Devi Shastri at The AP. I just thought it was a great look at some of the challenges, some new, some evergreen for the 1,400 federal community health centers that provide medical care, social services, and so much for so many folks in the country. It just looks at some of the issues. In Congress, there’s always the periodic federal funding drama of just, “When will community health centers get funded?” And, “They can’t long-term plan on that.” That and just how the staffing concerns, whether it’s money or quality of life, or just how they can address new health equities and things like that.

Rovner: It was a really good story. My extra credit this week is from ProPublica. It’s a coda to a series of stories that they’ve been working on, and we’ve been talking about over the past several years, after reporters at our fellow nonprofit newsroom helped uncover serious defects in the CPAP breathing machines manufactured by Philips Respironics, and the company’s failure to report complaints about the foam in those machines crumbling and getting into patient’s lungs. The company finally issued a recall. Then, apparently, the replacement foam also started to deteriorate, which also became a subject of the series. Now the GAO is investigating the FDA’s oversight of medical devices, and a federal criminal probe is being sought for Philips. And now, at least, the company will stop selling the machines in the United States. So journalism works, particularly when reporters keep at it. And boy, did they keep at it on this story.

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

Kenen: I’m mostly on Threads @joannekenen1.

Rovner: Sarah?

Karlin-Smith: I am @SarahKarlin or @sarahkarlin-smith.

Rovner: Sandhya?

Raman: I’m still with X and on Bluesky, @Sandhya@Writes.

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

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The ACA’s provision made medical and economic sense, encouraging Americans to use screening tools that could nip medical problems in the bud and keep patients healthy.

So when a bill for $236 arrived, Uddin — an occupational therapist familiar with the health care industry’s workings — complained to her insurer and the hospital. She even requested an independent review.

“I’m like, ‘Tell me why am I getting this bill?’” Uddin recalled in an interview. The unsatisfying explanation: The mammogram itself was covered, per the ACA’s rules, but the fee for the equipment and the facility was not.

That answer was particularly galling, she said, because, a year earlier, her “free” mammogram at the same health system had generated a bill of about $1,000 for the radiologist’s reading. Though she fought that charge (and won), this time she threw in the towel and wrote the $236 check. But then she dashed off a submission to the KFF Health News-NPR “Bill of the Month” project:

“I was really mad — it’s ridiculous,” she later recalled. “This is not how the law is supposed to work.”

The ACA’s designers might have assumed that they had spelled out with sufficient clarity that millions of Americans would no longer have to pay for certain types of preventive care, including mammograms, colonoscopies, and recommended vaccines, in addition to doctor visits to screen for disease. But the law’s authors didn’t reckon with America’s ever-creative medical billing juggernaut.

Over the past several years, the medical industry has eroded the ACA’s guarantees, finding ways to bill patients in gray zones of the law. Patients going in for preventive care, expecting that it will be fully covered by insurance, are being blindsided by bills, big and small.

The problem comes down to deciding exactly what components of a medical encounter are covered by the ACA guarantee. For example, when do conversations between doctor and patient during an annual visit for preventive services veer into the treatment sphere? What screenings are needed for a patient’s annual visit?

A healthy 30-year-old visiting a primary care provider might get a few basic blood tests, while a 50-year-old who is overweight would merit additional screening for Type 2 diabetes.

Making matters more confusing, the annual checkup itself is guaranteed to be “no cost” for women and people age 65 and older, but the guarantee doesn’t apply for men in the 18-64 age range — though many preventive services that require a medical visit (such as checks of blood pressure or cholesterol and screens for substance abuse) are covered.

No wonder what’s covered under the umbrella of prevention can look very different to medical providers (trying to be thorough) and billers (intent on squeezing more dollars out of every medical encounter) than it does to insurers (who profit from narrower definitions).

For patients, the gray zone has become a billing minefield. Here are a few more examples, gleaned from the Bill of the Month project in just the past six months:

Peter Opaskar, 46, of Texas, went to his primary care doctor last year for his preventive care visit — as he’d done before, at no cost. This time, his insurer paid $130.81 for the visit, but he also received a perplexing bill for $111.81. Opaskar learned that he had incurred the additional charge because when his doctor asked if he had any health concerns, he mentioned that he was having digestive problems but had already made an appointment with his gastroenterologist. So, the office explained, his visit was billed as both a preventive physical and a consultation. “Next year,” Opasker said in an interview, if he’s asked about health concerns, “I’ll say ‘no,’ even if I have a gunshot wound.”

Kevin Lin, a technology specialist in Virginia in his 30s, went to a new primary care provider to take advantage of the preventive care benefit when he got insurance; he had no physical complaints. He said he was assured at check-in that he wouldn’t be charged. His insurer paid $174 for the checkup, but he was billed an additional $132.29 for a “new patient visit.” He said he has made many calls to fight the bill, so far with no luck.

Finally, there’s Yoori Lee, 46, of Minnesota, herself a colorectal surgeon, who was shocked when her first screening colonoscopy yielded a bill for $450 for a biopsy of a polyp — a bill she knew was illegal. Federal regulations issued in 2022 to clarify the matter are very clear that biopsies during screening colonoscopies are included in the no-cost promise. “I mean, the whole point of screening is to find things,” she said, stating, perhaps, the obvious.

Though these patient bills defy common sense, room for creative exploitation has been provided by the complex regulatory language surrounding the ACA. Consider this from Ellen Montz, deputy administrator and director of the Center for Consumer Information and Insurance Oversight at the Centers for Medicare & Medicaid Services, in an emailed response to queries and an interview request on this subject: “If a preventive service is not billed separately or is not tracked as individual encounter data separately from an office visit and the primary purpose of the office visit is not the delivery of the preventive item or service, then the plan issuer may impose cost sharing for the office visit.”

So, if the doctor decides that a patient’s mention of stomach pain does not fall under the umbrella of preventive care, then that aspect of the visit can be billed separately, and the patient must pay?

And then there’s this, also from Montz: “Whether a facility fee is permitted to be charged to a consumer would depend on whether the facility usage is an integral part of performing the mammogram or an integral part of any other preventive service that is required to be covered without cost sharing under federal law.”

But wait, how can you do a mammogram or colonoscopy without a facility?

Unfortunately, there is no federal enforcement mechanism to catch individual billing abuses. And agencies’ remedies are weak — simply directing insurers to reprocess claims or notifying patients they can resubmit them.

In the absence of stronger enforcement or remedies, CMS could likely curtail these practices and give patients the tools to fight back by offering the sort of clarity the agency provided a few years ago regarding polyp biopsies — spelling out more clearly what comes under the rubric of preventive care, what can be billed, and what cannot.

The stories KFF Health News and NPR receive are likely just the tip of an iceberg. And while each bill might be relatively small compared with the stunning $10,000 hospital bills that have become all too familiar in the United States, the sorry consequences are manifold. Patients pay bills they do not owe, depriving them of cash they could use elsewhere. If they can’t pay, those bills might end up with debt-collection agencies and, ultimately, harm their credit score.

Perhaps most disturbing: These unexpected bills might discourage people from seeking preventive screenings that could be lifesaving, which is why the ACA deemed them “essential health benefits” that should be free.

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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The Host

Julie Rovner
KFF Health News

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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.

Based on the results of the first-in-the-nation primary in New Hampshire, it appears more likely than ever before that the 2024 presidential election will be a rerun of 2020: Joe Biden versus Donald Trump. And health is shaping up to be a key issue.

Trump is vowing — again — to repeal the Affordable Care Act, which is even more popular than it was when Republicans failed to muster the congressional votes to kill it in 2017. Biden is doubling down on support for contraception and abortion rights.

And both are expected to highlight efforts to rein in the cost of prescription drugs.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Anna Edney of Bloomberg News, and Jessie Hellmann of CQ Roll Call.

Panelists

Alice Miranda Ollstein
Politico

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Anna Edney
Bloomberg

@annaedney

Read Anna's stories.

Jessie Hellmann
CQ Roll Call

@jessiehellmann

Read Jessie's stories.

Among the takeaways from this week’s episode:

• Trump had a strong showing in the New Hampshire GOP primary. But Biden may be gathering momentum himself from an unexpected source: Drug industry lawsuits challenging his administration’s Medicare price negotiation plan could draw attention to Biden’s efforts to combat rising prescription drug prices, a major pocketbook issue for many voters.
• Biden’s drug pricing efforts also include using the government’s so-called march-in rights on pharmaceuticals, which could allow the government to lower prices on certain drugs — it’s unclear which ones. Meanwhile, Sen. Bernie Sanders of Vermont is calling on his committee to subpoena the CEOS of two drugmakers in the latest example of lawmakers summoning Big Pharma executives to the Hill to answer for high prices.
• More than a year after the Supreme Court overturned the constitutional right to an abortion, abortion opponents gathered in Washington, D.C., for the March for Life rally, looking now to continue to advance their priorities under a future conservative presidency.
• One avenue that abortion opponents are eying is the 19th-century Comstock Act, which could not only prohibit the mailing of abortion pills to patients, but also prevent them from being mailed to clinics and medical facilities. Considering the abortion pill is now used in more than half of abortions nationwide, it would amount to a fairly sweeping ban.
• And state legislators continue to push more restrictive abortion laws, targeting care for minors and rape exceptions in particular. The ongoing quest to winnow access to the procedure amid public reservations reflected in polling and ballot initiatives highlights that, for at least some abortion opponents, fetuses are framed as an oppressed minority whose rights should not be subject to a majority vote.

Also this week, Rovner interviews Sarah Somers, legal director of the National Health Law Program, about the potential effects on federal health programs if the Supreme Court overturns a 40-year-old precedent established in the case Chevron USA v. Natural Resources Defense Council.

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

Julie Rovner: Health Affairs’ “‘Housing First’ Increased Psychiatric Care Office Visits and Prescriptions While Reducing Emergency Visits,” by Devlin Hanson and Sarah Gillespie.

Alice Miranda Ollstein: Stat’s “The White House Has a Pharmacy — And It Was a Mess, a New Investigation Found,” by Brittany Trang.

Anna Edney: The New Yorker’s “What Would It Mean for Scientists to Listen to Patients?” by Rachael Bedard.

Jessie Hellmann: North Carolina Health News’ “Congenital Syphilis — An Ancient Scourge — Claimed the Lives of Eight NC Babies Last Year,” by Jennifer Fernandez.

Also mentioned on this week’s podcast:

Stat’s “Pharma’s Attack on Medicare Drug Price Negotiation Might Benefit Biden,” by John Wilkerson.

click to open the transcript

Transcript: Health Enters the Presidential Race

KFF Health News’ ‘What the Health?’Episode Title: Health Enters the Presidential RaceEpisode Number: 331Published: Jan. 25, 2024

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Jan. 25, 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 Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Jessie Hellmann of CQ Roll Call.

Jessie Hellmann: Hi there.

Rovner: And Anna Edney of Bloomberg News.

Anna Edney: Hello.

Rovner: Later in this episode we’ll have my interview with Sarah Somers of the National Health Law Program. She’s going to explain what’s at risk for health care if the Supreme Court overturns the Chevron doctrine, and if you don’t know what that is, you will. But first, this week’s news. We’re going to start this week with politics. To absolutely no one’s surprise, Donald Trump won the first-in-the-nation New Hampshire primary, and even though he wasn’t even on the ballot, because Democrats no longer count New Hampshire as first, President [Joe] Biden handily won a write-in campaign.

Since it seems very likely at this point that the November ballot will pit Trump versus Biden once again, I thought we’d look, briefly at least, at both of their health agendas for now. Trump has once again vowed to try and repeal the Affordable Care Act, which not only didn’t go well in 2017, we learned this week that the federal marketplace enrolled a record 21.3 million people for this year. In 2017, that number was 12.2 million. Not to mention there are now a half a dozen more states that have expanded Medicaid to low-income childless adults.

So with so many more millions of Americans getting coverage via Obamacare, even if Trump wants to repeal and replace it, is there any chance Republicans would go along, even if he wins back majorities in the House and the Senate? They have seemed rather unwilling to reopen this box of worms.

Edney: I mean, certainly, I think that currently they’re unwilling. I don’t want to pretend that I know what the next several months will hold until November, but even before they’re willing or not, what would the plan be? We never saw one, and I don’t anticipate there would be any sort of real plan, particularly if it’s the Trump White House itself having to put the plan together to repeal Obamacare.

Rovner: Yes. How many times did he promise that “we’ll have a plan in two weeks” throughout most of his administration? Alice, you were saying?

Ollstein: Yes. I think what we should be thinking about, too, is this can happen not through Congress. There’s a lot of President Trump could do theoretically through the executive branch, not to repeal Obamacare, but to undermine it and make it work worse. They could slash outreach funding, they could let the enhanced tax credit subsidies expire — they’re set to expire next year. That would also be on Congress. But a president who is opposed to it could have a role in that; they could slash call center assistance. They could do a lot. So I think we should be thinking not only about could a bill get through Congress, but also what could happen at all of the federal agencies.

Rovner: And we should point out that we know that he could do some of these things because he did them in his first term.

Ollstein: He did them the first time, and they had an impact. The uninsured rate went up for the first time under Trump’s first term, for the first time since Obamacare went into effect. So it can really make a difference.

Rovner: And then it obviously went down again. But that was partly because Congress added these extra subsidies and even the Republican Congress required people to stay on Medicaid during the pandemic. Well, I know elsewhere, like on abortion, Trump has been all over the place, both since he was in office and then since he left office. And then now, Alice, do we have any idea where he is on this whole very sensitive abortion issue?

Ollstein: He has been doing something very interesting recently, which is he’s sort of running the primary message and the general message at the same time. So we’re used to politicians saying one thing to a primary audience. These are the hard-core conservatives who turn out in primaries and they want to hear abortion is going to be restricted. And then the general audience — look at how all of these states have been voting — they don’t want to hear that. They want to hear a more moderate message and so Trump has been sort of giving both at once. He’s both taking credit for appointing the Supreme Court justices, who overturned Roe v. Wade. He has said that he is pro-life, blah, blah, blah. But he has also criticized the anti-abortion movement for going too far in his view. He criticized Ron DeSantis’ six-week ban for going too far. He has said that any restrictions need to have exemptions for rape and incest, which not everyone in the movement agrees with. A lot of people disagree with that in the anti-abortion movement. And so it has been all over the place.

But his campaign is in close contact with a lot of these groups and the groups are confident that he would do what they want. So I think that you have this interesting tension right now where he is saying multiple mixed messages.

Rovner: Which he always does, and which he seems to somehow get away with. And again, just like with the ACA, we know that all of these things that he could do just from the executive branch about reproductive health, because he did them when he was president the first time. Meanwhile, President Biden, in addition to taking a victory lap on the Affordable Care Act enrollment, is doubling down on abortion and contraception, which is pretty hard because, first, as executive, he doesn’t have a ton of power to expand abortion rights the way Trump would actually have a lot of power to contract them.

And, also, because as we know, Biden is personally uncomfortable with this issue. So Alice, how well is this going to work for the Biden administration?

Ollstein: So what was announced is mostly sort of reiterating what is already the law, saying we’re going to do more to educate people about it and crack down on people who are not following it. So this falls into a few different buckets. Part of it is Obamacare’s contraception mandate. There have been lots of investigations showing that a lot of insurers are denying coverage for contraceptives they should be covering or making patients jump through hoops. And so it’s not reaching the people it should be reaching. And so they’re trying to do more on that front.

And then, on the abortion front, this is mostly in this realm of abortions in medical emergencies. They’re trying to educate patients on “you can file this complaint if you are turned away.” Of course, I’m thinking of somebody experiencing a medical emergency and needing abortion and being turned away, and I don’t think “I’m going to file an EMTALA [Emergency Medical Treatment and Active Labor Act] complaint with the federal government and hope that they do something” is maybe the first thing on their mind. But the new executive order also includes education for providers and hospitals on their obligations.

This is also something a Trump administration could completely change. They could come in and say, “Forget that guidance. Here’s our guidance, which is no abortions in these circumstances.” So this is a really sensitive issue, but I think that the Biden campaign has seen how people have been voting over the last two years and feels that this is a really good message for them to do something on.

Rovner: Meanwhile, one issue both Republicans and Democrats are trying to campaign on is bringing down the cost of prescription drugs. Stat News has a story this week suggesting that all the lawsuits against the Medicare drug negotiation program could actually help Biden with voters because it shows he’s going after Big Pharma. Frankly, it could also tell voters that the Biden administration actually did something to challenge Big Pharma. Polls show most people have no idea, but Trump can point to lots of lawsuits over things he tried to do to Big Pharma.

Does one or the other of them have an advantage here, Anna? I mean, I know they’re going in different directions, but when you sort of boil it into campaign-speak, it’s going to sound pretty similar, right?

Edney: I think that that’s true, but one of the differences is, at least currently, what Biden’s done and doing some price negotiation through Medicare so far for 10 drugs under his administration is going forward. And you can name the drugs, name the prices, talk about it a little bit more specifically. What Trump ran up against was the lawsuits not falling in his favor. So he wanted more transparency as far as the drug companies having to say the price of their drugs in TV ads, and that wasn’t able to happen. And also reference pricing, so that the prices would be benchmarked to other countries. And certainly that never went forward either. And Trump really used the going after pharma hard in the last campaign, I would say, in 2016. And it worked in the beginning, and you would see the stock of these companies start going down the second he said pharmaceutical companies are getting away with murder or whatever big comment he was making. But it eventually lost any real effect because there didn’t seem to be plans to do anything drastic.

He talked about potentially doing negotiation, like is happening currently, but then that never came to fruition once he was in office. So I don’t know if that will come across to voters, but certainly the pharma industry doesn’t seem to be as afraid of Trump as what Biden’s doing right now.

Rovner: Jessie, I know Congress is still working on this PBM [pharmacy benefit managers] transparency, big bill. Are we getting any closer to anything? I think members of Congress would also like to run on being able to say they’ve done something about prescription drug prices.

Hellmann: I was just talking to [Sen.] Chuck Grassley [R-Iowa] about this because he is the “OG PBM hater.” And he was like, “Why is nothing happening?” He was just very frustrated. There are several bills that have passed House and Senate committees, and so I think, at this point, it’s just a matter of cobbling them all together, finding ways to pay for things. And since there’s also so many other health care things that people want to get done, it’s a matter of “Do we have enough money to pay for everything? What’s going to save money? What’s going to cost money?”

There’s also these health care transparency measures that Congress is looking at. There’s this site-neutral hospital payments thing that could be a money saver. So I think there’s just a lot going on in trying to figure out how it all fits together. But PBMs, I could definitely see them doing something this year.

Rovner: Sometimes, I mean, often it’s like you can’t get things onto the agenda. In this case, it sounds like there’s lots of things on the agenda, but they’re going to need to pay for all of them and they’re going to fight over the few places where they could presumably get some savings.

Edney: I was going to say, I saw that Grassley and some other senators wrote the Federal Trade Commission because they are due for a report on PBMs they’ve been working on for about a year and a half. And I think that the senators who want to go after PBMs are kind of looking for that sort of backup and that deep dive into the industry to make those statements about cost savings and what this would do for pharmaceutical prices.

Rovner: Well, to ratchet this up one more step, the Biden administration has proposed a framework for when march-in rights might be used. Is this the real deal or a threat to get pharma to back down on complaints about the Medicare price negotiations? Anna, why don’t you explain what march-in rights are?

Edney: March-in rights, which have never been used on a pharmaceutical company, were something that were put into law — I think it was around 1980 with the Bayh-Dole Act — and what it allows the government to do is say we invested a ton of money, either through giving money to university research or in the company itself, to do the very basic science that got us to this breakthrough that then the company took across the finish line to get a drug on the market. But usually, I think the main reason you might use it is because then the company does nothing with it.

Say they bought it up and it could be a competitor to one of their drugs, so they don’t use it. But it seems like it could also be used if the price is prohibitive, that it’s something that’s really needed, but Americans aren’t getting access to it. And so the government would be able to take that patent back and lower the price on the drug. But I haven’t heard a specific drug that they want to use this on. So I don’t know if they’re serious about using the march-in rights.

There is a request for information to find out how people feel about this, how it might affect the industry. The argument being that it could hamper the innovation, but we hear that a lot from the pharmaceutical industry as well. So unclear if that’s a true defense to not using march-in rights.

Rovner: Although march-in rights are a pretty big gun. There’s a reason they’ve never been used. I’ve seen them … lawmakers sometimes trot it out kind of as a cudgel, but I’ve never … the only time I think I saw them come close was after the anthrax scare, right after 9/11, when there was potentially a shortage of the important antibiotic needed for that. There was muttering about this, but then I think the drug company decided on its own to lower the price, which got us over that.

Well, yet another tack is being pursued by Sen. Bernie Sanders, chairman of the Senate Health Committee. He’s going to make the committee vote next week on whether to subpoena the CEOs of Johnson &  Johnson and Merck to require them to “provide testimony about why their companies charge substantially higher prices for medicine in the U.S. compared to other countries.” Well, we all know the answer to that. Other countries have price controls and the U.S. does not. So is this a stunt or not? And is he even going to get the rest of the committee to go along with the subpoena?

Edney: This wouldn’t be the first hearing on high drug prices pulling in CEOs. And it’s so opaque that you never get an answer. You never get something … I mean, certainly, they’ll blame PBMs and talk about that, and the finger-pointing will go somewhere else, but you never have some aha insight moment. So when the CEOs are coming in, it does feel a bit more like a show. And Bernie Sanders, the ones he wants to subpoena are from companies that are suing the Biden administration.

So there’s talk about whether that’s sort of a bit of a revenge him for that as well. I don’t know what exactly he would expect to hear from them that would change policy or what legislation they’re trying to work out by having this hearing.

Rovner: For an issue that everybody cares about, high drug prices. It sure has been hard to figure out a way into it for politicians.

Ollstein: We have seen public shaming, even without legislation behind it, can have a difference. I think we’ve seen that on the insulin front. And so I think it’s not completely a fool’s errand here, what Bernie’s trying to do. It will be interesting to see if the rest of the committee goes along with it. There’s been some tensions on the committee. There’s been bipartisan support for some of his efforts, and then others — less on the health front, I think more on the labor front — you’ve had a lot of pushback from the Republican members, and so it’ll be very telling.

Rovner: I was actually in the room when the tobacco industry CEOs came to testify at the House Energy and Commerce Committee, and that was pretty dramatic, but I feel like that was a very different kind of atmosphere than this is. I know everybody’s been trying to repeat that moment for — what is it? — 25, 30 years now. It was in the early 1990s, and I don’t think anybody really successfully has, but they’re going to keep at it.

All right, well, let us turn to abortion. Last Saturday would have been the 51st anniversary of Roe v. Wade, and the day before was the annual March for Life, the giant annual anti-abortion demonstration that used to be a march to the Supreme Court to urge the justices to overrule Roe. Well, that mission has been accomplished. So now what are their priorities, Alice?

Ollstein: Lots of things. And a lot of the effort right now is going towards laying the groundwork, making plans for a potential second Trump administration or a future conservative president. They see not that much hope on the federal level for their efforts currently, with the current president and Congress, but they are trying to do the prep work for the future. They want a future president to roll back everything Biden has done to expand abortion access. That includes the policies for veterans and military service members. That includes wider access to abortion pills through the mail and dispensing at retail pharmacies, all of that.

So they want to scrap all of that, but they also want to go a lot further and are exploring ways to use a lot of different agencies and rules and bureaucratic methods and funding mechanisms to do this, because they’re not confident in passing a bill through Congress. We’ve seen Congress not able to do that even under one-party rule in either direction. And so they’re really looking at the courts, which are a lot more conservative than they were several years ago.

Rovner: Largely thanks to Trump.

Ollstein: Exactly, exactly. So the courts, the executive branch, and then, of course, more efforts at the state level, which I know we’re going to get into.

Rovner: We are. Before that, though, one of the things that keeps coming up in discussions about the anti-abortion agenda is something called the Comstock Act. We have talked about this before, although it’s been a while, but this is an 1873 law, which is still on the books, although largely unenforced, that banned the mailing of anything that could be used to aid in an abortion, among other things. Could an anti-abortion administration really use Comstock to basically outlaw abortion nationwide?

I mean, even things that are used for surgical abortion tend to come through … it’s not just the mail, it’s the mail or FedEx or UPS, common carrier.

Ollstein: Yes. So this is getting a lot more attention now and it is something anti-abortion groups are absolutely calling for, and people should know that this wouldn’t only prohibit the mailing of abortion pills to individual patients’ homes, which is increasingly happening now. This would prevent it from being mailed to clinics and medical facilities. The mail is the mail. And so because abortion medication is used in more than half of all abortions nationwide, it could be a fairly sweeping ban.

And so the Biden administration put out a memo from the Justice Department saying, “Our interpretation of the Comstock Act is that it does not prohibit the mailing of abortion pills.” The Trump administration or whoever could come in and say, “We disagree. Our interpretation is that it does.” Now, how they would actually enforce it is a big question. Are you going to search everyone’s mail in the country? Are you going to choose a couple of people and make an example out of them?

That’s what happened under the original Comstock Act. Back in the day, they went after a few high-profile abortion rights activists and made an example out of them. I think nailing them down on how it would be enforced is key here. And of course there would be tons of legal challenges and battles no matter what.

Rovner: Absolutely. Well, let us turn to the states. It’s January, which is kind of “unveil your bills” time in state legislatures, and they are piling up. In Tennessee, there’s a bill that would create a Class C felony, calling for up to 15 years in prison, for an adult who “recruits, harbors or transports a pregnant minor out of state for an abortion.” There’s a similar bill in Oklahoma, although violators there would only be subject to five years in prison.

Meanwhile, in Iowa, Republican lawmakers who are writing guidelines for how to implement that state’s six-week ban, which is not currently in effect, pending a court ruling, said that the rape exception could only be used if the rape is “prosecutable,” without defining that word. Are these state lawmakers just failing to read the room or do they think they are representing what their voters want?

Edney: I don’t really know. I think clearly there are a lot of right-wing Republicans who are elected to office and feel that they have a higher calling that doesn’t necessarily reflect what their constituents may or may not want, but more is that they know better. And I think that that could be some of this, because certainly the anti-abortion bills or movements have been rejected by voters in places you might not exactly expect it.

Rovner: It feels like we’re getting more and more really “out there” ideas on the anti-abortion side at the same time that we’re getting more and more ballot measures of voters in both parties wanting to protect abortion rights, at least to some extent.

Ollstein: And I think going off what Anna said, I think that anti-abortion leaders, including lawmakers, are being more upfront now, saying that they don’t believe that this should be something that the democratic process has a voice in. The framing they use is that fetuses are an oppressed minority and their rights should not be subject to a majority vote. That’s their framing, and they’re being very upfront saying that these kinds of ballot referendums shouldn’t be allowed, and that states that do allow them should get rid of that. We’ll see if that happens. There are obviously lots of attempts to thwart specific state efforts to put abortion on the ballot. There are lawsuits pending in Nevada and Florida. There are attempts to raise the signature threshold, raise the vote threshold, just make it harder to do overall. But I found it very interesting and a pretty recent development that folks are coming out and saying the quiet part out loud. Saying, “We don’t believe The People should be able to decide this.”

Rovner: Well, obviously not an issue that is going away anytime soon. All right, well that is this week’s news. Now we will play my interview with Sarah Somers, and then we will come back and do our extra credits.

I am pleased to welcome to the podcast Sarah Somers, legal director of the National Health Law Program. She’s going to explain, in English hopefully, what’s at stake in the big case the Supreme Court heard earlier this month about herring fishing. Sarah, welcome to “What the Health?”

Sarah Somers: Thank you for having me, Julie. I’m glad to be here.

Rovner: So this case, and I know it’s actually two cases together, is really about much more than herring fishing, right? It seems to be about government regulation writ large.

Somers: That’s right. The particular issue in the case is about a national marine fisheries regulation that requires herring fishing companies to pay for observers who are on board — not exactly an issue that’s keeping everyone but herring fishermen up at night. And the fishing company challenged the rule, saying that it wasn’t a reasonable interpretation of the statute. But what they also asked the court to do was to overrule a Supreme Court case that requires courts to defer to reasonable agency interpretations of federal statutes. That’s what’s known as “Chevron deference.”

Rovner: And what is Chevron deference and why is it named after an oil company?

Somers: Why aren’t we talking about oil now? Yes, Chevron deference is the rule that says that courts have to defer to a reasonable agency interpretation of a federal statute. So, under Chevron, there’s supposed to be a two-step process when considering whether, say, a regulation is a reasonable interpretation. They say, “Does the statute speak directly to it?” So in this case, did the statute talk about whether you have to pay for observers on herring boats? It didn’t.

So the next question was, if it doesn’t speak directly to it or if it’s ambiguous or unclear, then the court should defer to a reasonable interpretation of that statute. And what’s reasonable depends on what the court determines are sort of the bounds of the statute, whether the agency had evidence before it that supported it, whether it showed the proper deliberation and expertise.

Rovner: One of the reasons that regulations are sometimes 200 pages long, right?

Somers: Exactly. And sometimes courts do say, “You know what? The statute spoke right to this. We don’t have to go any further. We know what Congress wanted.” Other times they take a step further. And the reason it’s called Chevron is it’s named after a case that was decided 40 years ago in 1984 during the Reagan administration, and it was Chevron Inc. USA v. the Natural Resources Defense Council. That case was about a regulation interpreting the Clean Air Act and about regulating air pollution.

Rovner: So, as you point out, you helped write one of the amicus briefs in the case about what overturning Chevron would mean for health care. It’s not just about herring fishing and Clean Air Act. Can you give us the CliffsNotes version of what it would mean for health care?

Somers: One of the purposes of our amicus brief was just to give another angle on this, because we were talking a lot about regulations in the context of air pollution, clean water, and the environment, but it touches so many other things, and this is just one aspect of it. So this brief, which we authored along with the American Cancer Society Action Network, and a Boston law firm called Anderson Kreiger, was signed by other health-oriented groups: the American Lung Association, American Heart Association, Campaign for Tobacco-Free [Kids], and then the American Academy of Pediatrics, American Academy of Public Health.

You get the picture. These are all groups that have a vested interest in programs of the Department and Health and Human Services. The brief talks about regulations promulgated by the Centers for Medicare & Medicaid Services. I’m going to call them CMS for short when we’re talking. And CMS is responsible for regulating the vast and complex Medicare and Medicaid programs. And, as you know, Medicare and Medicaid cover more than half of the population and touch the lives of almost everyone, regulating hospitals, some aspects of insurance, some aspects of practice of medicine.

You can’t escape the consequences of problems with these programs. And so that’s why the agency … Congress specifically gave HHS and CMS the power to regulate all of the issues in its purview. So that already have the power, and so the question is whether they use it wisely. We are arguing in this brief that for 40 years it’s worked just fine. That Congress has set the outer limits and been content to let the agency determine the specifics of these programs to fill in the gaps, as one Supreme Court case said. And this has implications for how hospitals operate, how insurance programs operate, and whether they operate smoothly.

And in our brief, we’re not really arguing for or against a particular interpretation or either for or against what the agency says. It’s just a matter of stability and certainty. The agency has the expertise, has the time, has the resources, and has the duty to figure out what these particular terms and statutes mean and how the programs should work. Just two examples we gave in the brief of the kind of issues that the agency should be determining are: What’s the definition of geographic area in the Medicaid Act for the purpose of setting hospital wages?

If your listeners are still listening, I hope, because that is boring, arcane, hyper-technical, and courts don’t have the expertise, much less the time, to do that. And CMS does. Or another question in a different area, whether feeding activities in a nursing home regulated by Medicaid: Are those nursing or nursing related services? The court’s not going to know. The courts doesn’t have expertise or time. And again, that’s what CMS is for.

So not only is this something that you need these interpretations in these rules to have the programs operate smoothly and consistently, and that’s the first part that’s important. But the second part is that you need consistency across the country. As you know well, there are hospital systems that operate across multi-states. There are Medicaid managed-care plans operating across multi-states. All aspects of health care is nationalized. If you have hundreds of district courts and courts of appeals coming up with different interpretations of these terms, you’re going to have a lot of problems. It’s not going to operate smoothly. So I heard some of the justices arguing, “Well, Congress just needs to do its job.”

Congress has obstacles to doing even the big, mega issues that are before them, these kinds of arcane specific issues. They don’t have the time or again, the expertise. That’s why they said, “CMS, you go do this.”

Rovner: When they were writing the Affordable Care Act, there were so many times in that legislation where it says, “The secretary shall” or “The secretary may.” It’s like, we’re going to punt all this technical stuff to HHS and let them do what they will.

Somers: Exactly. You figure out what the definition of a preventive service is, that’s not something that we are going to do. And there are also questions raised about is this … these unelected agency personnel, well, agencies — they are political appointees, and they also serve at the pleasure of the head of the agency. So they’re accountable to the executive branch and indirectly to the voters. The courts, at this point, once they’re on the court and the federal courts, they’re not accountable to the voters anymore. And so this would be a big shift of power towards the courts, and that is what we argued would be antithetical to the system working well.

Rovner: What would be an example of something that could get hung up in the absence of Chevron?

Somers: I thought that Justice [Ketanji Brown] Jackson, during the argument, gave a really good example. Under the Food and Drug Administration’s power to regulate new drugs and determining what is an adequate and well-controlled investigation. The idea of courts, every single drug that’s challenged in every single forum, having to delve into what that means without deference to the agency would be just a recipe for chaos, really.

Rovner: So some people have argued that Chevron is already basically gone, as far as the Supreme Court is concerned, that it’s been replaced by the major questions doctrine, which is kind of what it sounds like. If a judge thinks a question is major, and they will assume that the Congress has not delegated it to the agency to interpret. So what difference would it make if the court formally overturned Chevron or not here? I guess what you’re getting at is that we’re more worried about the lower courts at this point than the Supreme Court, right?

Somers: That’s right. The Supreme Court has not cited Chevron in something like 15 years. And they talked about that in the argument, but it’s for the lower courts. The lower courts still follow it. It is still very commonly cited and gives them a lot of guidance not to have to decide these issues in the first instance. It’s true that the major questions doctrine — and there are other threats to the power of the administrative agencies, and we should all be concerned about them. But this one is really the grease that keeps the machine going and keeps these systems going. And throwing all that up in the air would make a big difference. If only because the question in all of these Chevron cases, and so many of them was not the ultimate issue — about whether the regulation was a good policy — but the question was, was the statute ambiguous or not? And so that’s the part that would be up in the air and everyone can go back and re-litigate these, including the big interests that have a lot of time and resources to devote to litigation. And that would cause a great deal of uncertainty, a lot of disruption, and a lot of problem for the courts and for all the entities that function under these systems.

Rovner: And that’s a really important point. It’s not just going forward. People who are unhappy with what a regulation said could go back, right?

Somers: Oh yeah. They could go back. They could go to different courts. We’ve seen how litigants can forum-shop. They can find a judge that they think is going to be sympathetic to their argument and make a determination that affects the whole country.

Rovner: Well, we will be watching. Sarah Somers, thanks so much for joining us.

Somers: My pleasure. Thank you for having me.

Rovner: 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. Jessie, you were the first to join in this week. Why don’t you tell us about your extra credit?

Hellmann: Yeah. Mine is from North Carolina Health News. They wrote about how congenital syphilis is killing babies in the state. They had eight cases of deaths last year — compared to a decade ago, they had one. So it’s something that’s been on the rise in North Carolina, but also nationwide, and it’s caused a lot of alarm among public health officials because it’s pretty preventable. It’s something that doesn’t need to happen, but the story is about what the state is doing to improve their outreach to pregnant people. They’re doing media campaigns, they’re trying to make sure that people are doing their prenatal care and just trying to stop this from happening. So I thought that was a good story. It’s definitely kind of an under-reported issue. It’s something that public health officials have been raising an alarm about for a while now, but there’s just not enough funding or attention on the issue.

Rovner: For all the arguing about abortion, there’s not been a lot of discussion about maternal and child health, which obviously appears to be the one place that both sides agree on. Anna.

Edney: Mine’s in The New Yorker by Rachael Bedard. It’s “What Would It Mean for Scientists to Listen to Patients?” And it’s interesting, it’s about two Yale researchers who are doing a long-covid study, but it’s unique in the sense that when the CDC or anyone else does a long-covid study, they typically are trying to say, “Here are the exact symptoms. We’re going to work with 12 of them.” Whereas we know long covid, it’s seemingly a much more expansive symptom list than that, but researchers really like to have kind of metrics to go by.

But what these Yale researchers are doing is letting all of that go and just letting anybody in this and talking to them. They’re holding monthly town halls with people who are in this, whoever wants to show up and come and just talk to them about what’s going on with them and trying to find out, obviously, what could help them. But they’re not giving medical advice during these, but just listening. And it just was so novel, and maybe it shouldn’t be, but I found it fascinating to read about and to get their reactions. And it’s not always easy for them. I mean, the patients get upset and want something to happen faster, but just that somebody is out there doing this research and including anybody who feels like they have long covid. It was really well-written too.

Rovner: It’s a really good story. Alice.

Ollstein: So I’m breaking my streak of extremely depressing, grim stories and sharing kind of a funny one, although it could have some serious implications. This is from Stat, and it’s from an inspector general report about how the White House pharmacy, which is run by basically the military, functioned under President Trump. And it functioned like sort of a frat house. There was no official medical personnel in charge of handing out the medications, and they were sort of handed out to whoever wanted them, including people who shouldn’t have been getting them. People were just rifling through bins of medications and taking what they wanted. These included pills like Ambien and Provigil, sort of uppers and downers in the common parlance. And so I think this kind of scrutiny on something that I didn’t even know existed. The White House pharmacy is pretty fascinating.

Rovner: It was a really, really interesting story. Well, I also have something relatively hopeful. My extra credit this week is a journal article from Health Affairs with the not-so-catchy headline “‘Housing First’ Increased Psychiatric Care Office Visits and Prescriptions While Reducing Emergency Visits,” by Devlin Hanson and Sarah Gillespie. And if they will forgive me, I would rename it, calling it maybe “Prioritizing Permanent Housing for Homeless People Provides Them a Better Quality of Life at Potentially Less Cost to the Public.”

It’s about a “Housing First” experiment in Denver, which found that the group that was given supportive housing was more likely to receive outpatient care and medications and less likely to end up in the emergency room. The results weren’t perfect. There was no difference in mortality between the groups that got supportive housing and the groups that didn’t. But it does add to the body of evidence about the use of so-called social determinants of health, and how medicine alone isn’t the answer to a lot of our social and public health ills.

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

Edney: Mostly just on Threads, so @anna_edneyreports.

Rovner: Alice?

Ollstein: @AliceOllstein.

Rovner: Jessie.

Hellmann: @jessiehellmann on Twitter.

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

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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.

As this election year begins in earnest, making it harder for Congress to pass bills, lawmakers on Capitol Hill are still struggling to fund the government for the fiscal year that began last October. And many health priorities hang in the balance.

Meanwhile, the Supreme Court is again wading into the abortion debate, accepting a case out of Idaho that pits a federal law requiring emergency care, including for pregnant women, against the state’s strict abortion ban.

This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Tami Luhby of CNN, and Alice Miranda Ollstein of Politico.

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Sarah Karlin-Smith
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Tami Luhby
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Alice Miranda Ollstein
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Among the takeaways from this week’s episode:

• In Washington, lawmakers have reportedly reached a deal that could pave the way for passing necessary government spending bills. But it is unlikely they will pass a full package before the current extensions end, leaving many federal health programs hanging. And ahead of next week’s Iowa caucuses, it bears asking what Republicans would do in health if the party reclaims the White House.
• The Supreme Court is again stepping into the fray over abortion rights, choosing to review the conflict between Idaho’s abortion ban and a federal law requiring emergency medical care. It is notable that justices did not have to take this case and, by swooping in now, are setting up another major abortion ruling before the 2024 election.
• The Biden administration announced it will scale back so-called conscience protections for health providers that the Trump administration sought to beef up. The back-and-forth over the policy — which was created during the George W. Bush administration — reinforces the importance of pressing presidential candidates about what they would do administratively on abortion policy, rather than asking what bills they might sign into law.
• News out of Florida this week: Newly introduced legislation there would, among other things, classify abortion as a felony and penalize those outside the state involved in the sale or distribution of abortion pills if they are “likely to be used in Florida” — a concerning example of a state effort to regulate access to abortion nationwide.
• And the FDA approved Florida’s request to import drugs from Canada, a change for which Republican Gov. Ron DeSantis is taking credit — though both President Joe Biden and former president Donald Trump could also claim some of that credit. But there are a lot of hurdles left before the state receives its first shipments, and due to the way the policy will be implemented, it may not save the state much money anyway.

“This Week in Health Misinformation” highlights Olympic gold medalist and medical crowdfunding beneficiary Mary Lou Retton, who said this week she could not afford health insurance before her headline-grabbing bout of pneumonia because her preexisting conditions made having insurance too expensive. But a decade into the existence of the Affordable Care Act, the fact is that patients can no longer be penalized on the insurance market for preexisting conditions — and, as the record 20 million Americans who enrolled in ACA coverage this year may attest, there are plenty of federal subsidies available to help afford insurance, too.

Also this week, Rovner interviews American Medical Association President Jesse Ehrenfeld, whose focus is helping the nation’s physicians navigate a rapidly changing health care system.

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

Julie Rovner: CNN’s “Bottled Water Contains Thousands of Nanoplastics So Small They Can Invade the Body’s Cells, Study Says,” by Sandee LaMotte. Also, ScienceAlert’s “It Turns Out Paper Straws Might Pose a Serious Problem Too,” by Carly Cassella. Also, The Washington Post’s “How Plastic Hides in Supposedly Eco-Friendly Laundry Products,” by Michael J. Coren.

Tami Luhby: KFF Health News’ “Most People Dropped in Medicaid ‘Unwinding’ Never Tried to Renew Coverage, Utah Finds,” by Phil Galewitz.

Alice Miranda Ollstein: Stat’s “Texas Taxpayers Wanted to Help the Poor Get Health Care. Instead They’re Funding a Medical School at a Wealthy University,” by Rachel Cohrs.

Sarah Karlin-Smith: The New York Times’ “The F.D.A. Warned an Asthma Drug Could Induce Despair. Many Were Never Told,” by Christina Jewett and Benjamin Mueller.

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Transcript: All About the (Government) Funding

KFF Health News’ ‘What the Health?’Episode Title: 329Episode Number: All About the (Government) FundingPublished: Jan. 11, 2024

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Jan. 11, 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 Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Hello.

Rovner: Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: And Tami Luhby of CNN.

Tami Luhby: Good morning.

Rovner: Later in this episode, we’ll have my interview with Jesse Ehrenfeld, this year’s president of the American Medical Association. It’s a bumpy time to be a doctor, and the AMA is more relevant than it’s been for quite a few years. But first, this week’s news. So we heard over the weekend that House and Senate negotiators reached a deal on top-line spending ceilings for defense and non-defense discretionary spending.

Actually, they were kind of the top lines, I believe, that they agreed to last summer, and then the House Republicans tried to change. That is all well and good, and it is definitely a prerequisite for passing full-year appropriations bills, but that’s not going to happen between now and Jan. 19, when the first of two temporary spending bills expires. So what do we expect to happen?

Ollstein: I was up on the Hill yesterday, and it’s a very “what they’re saying vs. what they’re doing” situation. They’re talking a lot about, “We got this top line. We’re moving forward. People are somewhat warming to the idea of another short-term CR [continuing resolution] to give them a little breathing room to get this done.” But then Republicans who were pissed about the entire process voted down an unrelated rule on an unrelated bill just to say, “We’re mad.” So that’s obviously not a good sign for getting big things done quickly in the next few weeks.

An issue I’m tracking is also conservatives who are disgruntled about the level of spending being higher than they wanted, saying, “Well, if we’re going to agree to this, we might as well get some policy wins out of it.” And they’re digging in harder on some of these anti-abortion provisions, other culture war things. I think the health care ones are being somewhat overshadowed right now by the immigration border stuff, but the health care things are still in the mix, for sure.

Rovner: Yeah. The CR that expires first also includes continuing authorizations for a bunch of health programs like community health centers and a delay of a bunch of scheduled Medicare payment cuts. Tami, you’re following WIC [Women, Infants, and Children nutrition program], I know, and food stamps. Do we have any idea what the fate is going to be of these things that will also expire when that first CR expires? Do we expect they’ll continue until Congress decides what to do?

Luhby: Well, actually things are looking a little better for WIC participants in terms of a shutdown, not necessarily in terms of full-year funding. But if the government had shut down in October, the USDA warned that it actually only had a few days left of money to provide for WIC. But if the government does shut down next week, then the USDA has told me that SNAP participants, food stamp participants, and WIC participants can expect to continue to get their benefits for food stamps January and February and for WIC January, February, March.

But separate from that, one of the issues that WIC participants have — and WIC, by the way, is the program that provides funding for pregnant women, new moms, infants, and young children to buy groceries. The WIC program is underfunded because there’s actually a big growth in enrollment. And so, even though the Senate provided some more money in their initial bill, they actually need more than a billion dollars more to continue the program at the current participation levels.

And a lot of folks are warning that if Congress doesn’t provide more money, there could actually be waiting lists for the first time in decades. So it’s a big issue that’s continuing because, as we know, the Republicans are not looking to add more money to nutrition assistance.

Rovner: Jumping ahead, it’s a little bit to the abortion debate. This is the argument that if you’re basically going to force women to have babies, you’re going to need to help support them if the women otherwise would’ve had an abortion because they couldn’t afford it. I think where we are with WIC, I think, is sort of the leading edge of this.

Luhby: And WIC is actually very important to that because it also provides breastfeeding assistance and guidance as well as other supports for new moms.

Rovner: So there were things, though, that didn’t even make it into the CR. One of them is the 3.4% cut in Medicare doctor pay. That took effect Jan. 1. Doctors I know would like to get that rolled back. There’s other things that are hoping to catch a ride on whatever the next vehicle is, right?

Karlin-Smith: I mean, one thing I had been watching is PBM [pharmacy benefit manager] reform. There seemed like there was some bipartisan and bicameral momentum to try and tack that on to the next big moving package. And one positive thing for that is that it does offer some amount of savings that then could be applied to other areas like spending, including potentially helping maybe with some of the Medicare cuts. So that’s something in the mix to look for.

Rovner: Yeah. Something that actually is proceeding on a separate track, right? We don’t expect that to be folded into the appropriations — unless we do. My impression was that was proceeding on its own, at least for the moment.

Karlin-Smith: I think it was proceeding on its own, but there’s been talk of could they fold it into any deal that struck to fund the government, because I think the likelihood that it really does fully clear both the House and Senate on their own is small.

Rovner: Yes, it is an election year. It is harder for Congress to get anything done. Speaking of which, on the campaign trail, the Iowa caucus is next week. Boy, that sort of snuck up on us. Former President [Donald] Trump still seems very likely to win, and he’s once again vowing to undo the Affordable Care Act, which, by the way, hit an all-time enrollment record of 20 million this week. And open enrollment isn’t even quite over. Tami, do we know what Trump would do instead? That seems to be the part. He doesn’t ever say.

Luhby: No. It’s pretty much the same plan that he probably has from 2016 and 2017, which we never really fully learned about. So, no, it’s just going to be replaced with a “better plan” because, in his view, Obamacare is failing, and as we know, [Florida Gov.] Ron DeSantis also jumped on the same bandwagon, saying that he would actually also come up with a better plan, but he needs a few months to think about it.

Rovner: Because it’s always been right about to happen, of course.

Luhby: Well, as you may have heard, health care is complicated.

Rovner: And we’ll see something in two weeks.

Luhby: Right. Along with his block grant proposal for Medicaid that he mentioned at last night’s CNN debate.

Rovner: Yes. I was sort of taken by the comments of how they would fix health care in that debate, because Nikki Haley says, “We can fix it with tort reform and transparency.”

Luhby: Transparency. Yes.

Rovner: Right. Which are nice things, and as we say, almost every week, Congress is working on those things, but they are not going to solve what ails the health care system. All right, let us turn to abortion. Remember last week when I said we were still waiting to hear from the Supreme Court on the emergency petition from Idaho regarding the conflict between its state abortion ban and the federal Emergency Medical Treatment & Active Labor Act, EMTALA?

Well, on Friday, the court not only took the case, it overturned the stay of Idaho’s ban. So, at least for now, doctors cannot even provide abortions in medical emergencies unless the woman is at immediate risk of death. Alice, I assume that gives us a hint of where the court might be going with this case, and I imagine also that similar case out of Texas.

Ollstein: Yeah. So again, with the Supreme Court, you kind of have to read the tea leaves and make educated guesses. They’re obviously very secretive. But people who are following this case closely that I’ve spoken to, they think that both the stay of the lower-court ruling and the fact that they took this case at all is the sign that they’re really gunning for ruling on the side of the state abortion restrictions. Because this is really about the state-federal clash. When state abortion bans run into federal protections for patients in emergency circumstances, and which will prevail in that circumstance. So they didn’t have to take this case. The thinking was there is eventually going to be a circuit split on this issue between the 9th Circuit and the 5th Circuit. But the 9th Circuit hasn’t had a chance to rule yet. And so they could have waited, let this play out, allowed the 9th Circuit to hear the case and issue a decision, that would’ve probably punted this case until after the election. So it’s really interesting that they instead wanted to swoop in, allow Idaho to leapfrog the 9th Circuit, and also insert themselves into this really politically volatile case, and now they’re poised to issue a ruling right before the 2024 election that could have major implications for the whole country.

Rovner: They’re going to hear the mifepristone case before this summer too, right?

Ollstein: Absolutely. And so even people who had sort of assumed on the mifepristone case like, “Oh, the Supreme Court’s going to kind of punt. They’re going to dismiss on standing.” Now, because of how aggressive they’re being in this other case, I have experts telling me, “Well, now I’m not so sure about the mifepristone case. Maybe they don’t care about optics as much as they used to.”

Rovner: Well, also, I think this is this Supreme Court’s theme, of “let states do whatever they want.” Even though federal law is supposed to trump state law, they seem to be reversing that in a rather aggressive fashion.

Ollstein: Yes. A big theme is definitely skepticism of federal rulemaking power. This falls under that same category as well.

Rovner: Well, speaking of federal rulemaking power, those who follow abortion policy in D.C. know that every time an administration changes parties, the so-called Mexico City policy that bans funding to international groups that support abortion rights gets either canceled or restored, depending on which party is in power. Well, now we have another policy that seems to be flip-flopping every time an administration changes. It was a rule first issued at the end of the George W. Bush administration. The so-called conscience rule made it easier for medical professionals and others in health care to decline to provide care that violates their religious or moral beliefs. So not just abortion but transgender care, in some cases, just treating people with AIDS. The Obama administration scaled back the Bush rule, and then the Trump administration broadened it. Then it got blocked by the courts, and now the Biden administration has formally rolled back the Trump changes that never really took effect. Alice, where are we with this?

Ollstein: Like you said, this is a back-and-forth, and I think this is why a lot of the questions being asked of candidates on the campaign trail right now, related to abortion, are the wrong questions. They keep getting asked about what kind of bills they would sign. That’s not the question. The question is what would they do administratively, which they could do so much. They could undo this. They could reverse all kinds of things. I follow the Title X stuff. I follow the Mexico City policy on restrictions on international spending on reproductive health. There’s just so much, obviously — FDA regulation of abortion pills — but these are the things we should be focused [on], not a bill that Congress has shown itself unable to pass even with one-party control of Congress.

Rovner: Nikki Haley keeps correctly saying there aren’t 60 votes for anything in the Senate related to abortion.

Ollstein: Right. But then, she also is saying that to mean a future Republican president couldn’t really do much, and that part is not true. They could do a lot.

Rovner: Exactly. Well, moving on, it’s January, and state legislatures are coming back into session. And we’re seeing some pretty eye-popping bills introduced in Florida, where abortion rights supporters just secured enough signatures to get a referendum protecting abortion rights on the 2024 ballot. Republican state Rep. David Borrero introduced a bill that would not only ban abortion, it would classify it as a third-degree felony with penalties of up to 10 years in prison. It also seeks to reach anyone outside the state who makes, sells, or mails abortion pills if they are, quote, “likely to be used in Florida.” The bill also defines personhood as beginning at the moment of fertilization, which would, among other things, make most birth control illegal and give fetuses constitutional rights. Alice, this bill is obviously not likely to pass, but legislators are playing the long game here by trying to make these things look sort of not out of the ordinary, right?

Ollstein: Yeah, the pill one, I think, is more the one to watch there. I’m curious if other states try to do that as well. Obviously, that runs into legal concerns about regulating interstate commerce, et cetera. But I think that we’ve seen these sort of nation attempts to restrict the movement of both people and medications across state lines, since that is a huge way that people are managing to terminate pregnancies despite bans right now. And so I think there’s only going to be more and more activity in that area to try to close off those remaining outlets for people. But yes, on the personhood front, that’s something that states have been attempting to do for a long time now, obviously more recently. And I think there’s sort of a strategy of, “Let’s just put it in everything we can. Let’s throw it in everything we can. Let’s throw it in bills. Let’s throw it in amicus briefs.” And the hope is to eventually force this issue in court and to get a court to rule on whether the 14th Amendment covers fetuses, basically. Will that happen and when remains to be seen, but there’s definitely an effort to sort of seed it in the landscape.

Rovner: Sarah, this obviously — not so much the personhood part, although maybe that too — but trying to ban the movement of medication is something that clearly impacts the FDA. They seem to have been pretty quiet about this, but there’s an awful lot that seems to be sort of threatening the basic core procedures of what the FDA does. Are you hearing anybody whispering about this? Is there concern?

Karlin-Smith: I think the mifepristone case at the Supreme Court is a concern for people who watch FDA’s power and regulation, not just because of abortion but because it is seen as depending on how the court decides that case is something that really could touch on all of its regulatory authority as well. Certainly, this provision that Florida is trying to put in is really something where they seem like they’re effectively trying to regulate the abortion pill throughout the entire country and regulate manufacturers. So that would be concerning, again, if that somehow came to pass and was not struck down by courts, as Alice mentioned, for interstate commerce regulation, which is not some power that is usually given to the states, but so, in general, the abortion pill controversy makes anybody who’s impacted by the FDA regulation nervous.

Rovner: Well, meanwhile, the Federal Trade Commission has entered the chat. This week, it barred a tech company from selling data on people’s visits to medical centers and other health facilities. This was not affecting abortion. They were actually just trying to help people figure out where people are and help them sort of get through their medical undertakings. But this seems like kind of a big deal enforcing privacy post-Dobbs. It’s the first one of these I’ve seen. Have you seen any of these, Alice?

Ollstein: I’m in the same camp as you. Yeah. This is sort of the first I’ve seen of this. But as has been the trend over the last couple of years, it’s a very “throw things against the wall and see what sticks” kind of environment, and so you can’t dismiss the outliers because the outliers can very quickly become the norm.

Rovner: This obviously was not a company that was trying to get women’s menstrual data and figure out whether they’re pregnant and whether they’re going to have an abortion. But there is a lot of concern that because there’s so much medical data floating out now in the metaverse, shall we say, that it would not be that hard to do that. And I guess the FTC is trying to plant a flag and say, “Mm-mm, don’t even try.” Although I’m sure people will …

Ollstein: Again, circling back to our previous theme, like, who a presidential administration installs at places like the FTC that you might not think that has anything to do with health care and abortion, but it certainly does. It certainly can. Same with DOJ, Labor Department. A lot of these things touch on reproductive health in ways that aren’t always obvious.

Rovner: That’s right. Well, turning to prescription drug news, the FDA has approved Florida’s request to import cheaper drugs from Canada. But, Tami, you wrote about this. This comes with a long list of caveats, right? It’s not like they just opened the borders and said, “OK, buy what you want.”

Luhby: No, and Florida has also put forth a fairly restricted proposal. It’s only going to be for people in their public payer program, people like inmates and people who are cared for by the county health systems and, later, Medicaid. And it’s also a pretty small list of drugs, drugs for HIV/AIDS and mental illness, and certain ones. But no, there’s a lot of hurdles before the state can actually start importing drugs. There’s going to likely be a lawsuit by PhRMA. They came out pretty strongly against it. They don’t want this, and Canada doesn’t necessarily want this. They said this in 2020 when the Trump administration first indicated that they were going to move in this direction, and then Health Canada on Friday put out a pretty strong statement saying they are clear in its position. “Bulk importation will not provide an effective solution to the problem of high drug prices in the U.S.” So there’s a long path before Florida will be able to actually see this and an even longer path before its general residents will see it. People may think, “Oh, I can go up to CVS now and order my Canadian version of the drug, which will be much cheaper.” And that’s not at all the case.

Rovner: Sarah, this has been going on for more than 20 years — I think I covered it first time in 1998 — because it’s really popular among Republicans and Democrats because it sounds so good. “We’ll just buy cheaper drugs from other countries where they have the same drugs, and they sell them for less money because they have price controls.” But Canada can’t even supply Florida, much less the rest of the country, right?

Karlin-Smith: Right. I think people, sometimes you look at Canada on a map geographically. It’s a very large area, but the population compared to the U.S. is much smaller. So the supply chain that’s feeding Canada is very different. And then you get into why HHS and FDA has usually pushed back against this idea is because they’re concerned about securing the supply-chain safety and making sure people are actually getting what they … think they’re getting and know how to use the drug. And what’s basically happened under starting the Trump administration and then Biden’s kind of continued it is they came up with a pathway to sort of make importation potentially possible. But they put in so many hoops that these states will have to go through and so many processes in place to ensure the safety of it that by the time Florida does all of this, and again, as Tami mentioned, FDA hasn’t cleared any specific drugs for Florida to import yet; each drug product still is going to have to go through a bunch of steps to get that OK. So by the time they do all of that, it doesn’t look like it’s going to save very much money. Florida’s estimating maybe not quite $200 million for the first year and about the same the second year. If you look at just their Medicaid spending in a year on outpatient drugs, it’s like $1.-something billion. So you can see how tiny a savings that is.

Rovner: Yes. This is one of those things that’s not been partisan. It’s always been sort of the FDA wanting to protect the integrity of the supply chain, whether it’s controlled by Democrats or Republicans versus Democrats and Republicans who would like to find a way to help their constituents get cheaper drugs.

Luhby: One thing also to note that’s going to be interesting, because there’ve been so many people involved in this, we saw Ron DeSantis say yesterday at the debate that he took credit for pushing the federal government and beating the federal government, I think he said, to be allowed to import drugs. But this is also going to be a talking point that Trump and Biden will also be able to say on the campaign. So basically, everyone is probably going to try to take credit for this.

Rovner: Right. Everybody’s going to take credit for something that’s probably only going to happen in a very small way, if it happens at all.

Luhby: If it all happens at all.

Rovner: That’s right. Well, also this week, drug maker Eli Lilly said it is setting up its own telehealth service to help patients access not only its soon-to-be blockbuster weight loss drug Zepbound but also other diabetes and migraine drugs, basically cutting out the doctor or at least cutting out the patient’s regular doctor, if they have one. Sarah, this feels to me like a really big sea change. Is the FDA going to let this happen? Is the AMA going to let this happen?

Karlin-Smith: It’s really interesting. I think the first headline of it makes it seem a little bit more extreme or maybe novel than once you actually look into the details because Lilly’s …

Rovner: Kind of like drug importation.

Karlin-Smith: Right. Although I think more patients maybe will actually be served by this program. But, basically, Eli Lilly is setting up a website that will then connect patients to outside telehealth companies that have the ability to prescribe the drug. Again, these telehealth companies are supposedly prescribing all different drugs, not just Eli Lilly products. The doctor’s supposed to make sure you actually qualify for the product, and so forth. And then Lilly also seems to have developed partnerships with a couple online pharmacy companies that could then directly mail you the product. So Eli Lilly is sort of helping facilitate these connections for patients. But I think probably to avoid various scrutinies by the federal government, they’ve tried to disconnect themselves a few steps, but certainly make the process of getting a drug and their drug easier for patients. Also helping ease the process of getting any copay support or coupons the company offers. So they seem to be kind of taking advantage of a trend that we’ve seen in other areas, with ADHD, like male sexual health products, and so forth, of people wanting to do this through telehealth. And so they’re trying to, I think, get at least a cut of it or at least help steer their product there. But there’s definitely going to be questions, I think, around how you handle advertising and other things for the government to look at.

Rovner: Yeah, it’s definitely a space that, now, we’re going to have to start watching as well as everything else. All right. Well, now it is time for “This Week in Health Misinformation,” which is going to Olympic gold medalist gymnast Mary Lou Retton. Retton, who is now in her mid-50s, contracted a rare form of pneumonia, ended up in the hospital for a month, and became the subject of a crowdfunding effort launched by her daughter because she didn’t have health insurance. Retton, who has been very closed-mouthed about her illness and what happened to the half a million dollars the crowdfunding campaign raised, as is her right, did do an interview this week with the “Today” show on NBC in which she said she couldn’t afford health insurance because her preexisting conditions made it too expensive. For the record, if you’re uninsured, you can still sign up for an Affordable Care Act Plan in most states, and you can’t be charged more due to preexisting conditions. And there are still extra subsidies that we talked about earlier that were implemented during covid that makes insurance even more affordable. Why is it that people don’t know this yet?

Ollstein: Well, as we saw with record-breaking enrollment, a lot of people do know it, but the people who don’t are still loud.

Rovner: We’re 10 years into the ACA!

Ollstein: Yes. It’s funny. I mean, living in D.C. and doing this work, I always try to think about what of all of our reporting actually breaks through around the country. And it’s always interesting to see what does and what doesn’t.

Rovner: I used to stomp around the NPR newsroom when the ACA was just getting up and running, saying, “It is not my job to do the administration’s publicity. It’s really not my job.” But …

Luhby: Yeah.

Rovner: … they are still working on it.

Luhby: It also may be selective ignorance, because I’m sure if she actually asked anyone about health insurance or called any agent or insurer and said, “Well, I have this preexisting condition,” they may have said, “Well, on the ACA, it doesn’t matter anymore.”

Rovner: Yes. And that if she said she didn’t have the money after her divorce, it’s like those are the people who are eligible for big subsidies. All right. Well, that is this week’s news. Now, we will play my interview with AMA President Jesse Ehrenfeld, and then we will come back and do our extra credits.

I am pleased to welcome to the podcast, in person here in our D.C. studio, Dr. Jesse Ehrenfeld, president of the American Medical Association. Dr. Ehrenfeld is an anesthesiologist, medical school professor, researcher on medical information technology, and director of a statewide health philanthropy in Wisconsin, among other activities. He’s an Afghanistan combat veteran twice over, as well as the first openly gay president of the AMA and a national advocate for LGBTQ+ rights. Dr. Ehrenfeld, thank you so much for coming in. You are a very busy person.

Jesse Ehrenfeld: Well, thanks for having me. It’s great to talk to you today.

Rovner: So I want to start on Capitol Hill, since we’re here in D.C.

Ehrenfeld: Sure.

Rovner: And Congress is coming back and working on a budget, or so we hear.

Ehrenfeld: We hope they’re working.

Rovner: I know physicians are facing, again, a cut in Medicare pay, but that’s not the only AMA priority here in Washington at the moment, right?

Ehrenfeld: Well, it’s a big one for us. And, you know, it’s really painful that you turn the clock back, Jan. 1, and 3.37% Medicare cut to physician payments. It’s unconscionable. And so we’re optimistic that we can get a fix, hopefully retroactive, as the omnibus consolidation work goes forward, short of this Jan. 19 deadline coming up. But we can’t have it. Physicians continue to struggle. My parents lost their own primary care physician because of a challenge with their primary care doctor not being able to take Medicare anymore. And what we’re seeing is more and more doctors just stopping seeing new Medicare patients, or opting out of the program entirely. So, every other provider under Medicare is actually fighting for how many increase they’re getting while doctors are getting cut. So we’re hopeful that we can solve this, but it really is something that’s just urgent for us as an association.

Rovner: I thought we took care of this in 2015. I feel like it’s Groundhog Day. I covered it every year from about 2003 to about 2015, and then we solved it briefly.

Ehrenfeld: We solved one problem and replaced it with another, unfortunately. And the doomed SGR did die in 2015 — the unsustainable “sustainable growth rate” problem — that did lead to those year-end patches. And, unfortunately now, though, because of budget neutrality rules and other — we’ll call them “features” — of the program, we’re in the situation again. We do have optimism, though, that we might get some standing inflationary updates. There was the introduction of a bill last session. And we hope that that can be something that does move forward once we get through this time-sensitive issue to deal with the 3.37% cut.

Rovner: So I feel like the physician shortage is kind of like climate change. People have been warning about it for decades, and suddenly it’s here.

Ehrenfeld: It’s here.

Rovner: With people having to wait weeks or sometimes months to see a doctor. Obviously, like with climate change, it’s going to take a while to get out of the hole that we have dug. I know we’ve seen the establishment of several new medical schools, both allopathic and osteopathic, in the past decade. How soon might we be able to see some relief, and what more will it take beyond training more doctors?

Ehrenfeld: Well, we’re opening more medical schools, but we’re not actually training more doctors. And that’s the problem. We haven’t expanded GME [Graduate Medical Education] residency programs. And unfortunately, because, as you know, GME funding through the federal government is tied to a fixed cap, set in the 1990s by Medicare, we’ve opened all these new schools and the students don’t have a place to go to train. So that’s a problem that we need to solve. We’ve had a little tiny, tiny increase these past few years, a couple of hundred spots here and there. We need thousands more training spots open. We need the GME dollars to come from Medicare. We also need to solve some of the issues around how we get international medical graduates here and ready to practice in the U.S. Twenty-five percent of practicing physicians in the U.S. were trained abroad. Most people don’t know that. We already have a huge international workforce, but we do silly things, like we’ll let an international doctor train their residency here, and then we make them go away for two years to their home country before they can come back. There are H-1B visa waiver bills that are circulating around the Conrad 30 extension. We need to do those things as well. Unfortunately, as you’re aware, immigration reform is a challenging issue here in Washington. But there are commonsense solutions that have bipartisan support. And we’re hopeful that we can get some workforce pressure reductions, not just by expanding GME for U.S.-trained individuals, but also those international graduates.

Rovner: Yeah, I feel like people forget that immigration is about more than just people coming across the southern border. There are a lot of skilled-worker issues in the immigration debate.

Ehrenfeld: In lots of industries, health care, technology, other places as well.

Rovner: I know the rise — or should I say the “re-rise” — of prior authorization requirements from insurance companies is something that contributes to physician burnout and the physician shortage by driving doctors out of practice, just from frustration. The Biden administration has a new regulation to limit prior authorization in the pipeline. Assuming that that regulation is finalized soon, how close will that come to fully addressing the problem for your members?

Ehrenfeld: You know, we hope it’ll move the needle a little bit, but we need wholesale reform, and we need to do more than Medicare Advantage plans. Unfortunately, I hear every week from colleagues who are just at their wits’ end, and it’s frustrating. I see it with my own parents. I’m an anesthesiologist. I have a habit now, I ask my patients: “So how long did it take your surgery to get scheduled?” Eh, it’s a couple weeks or a month. I said, “And how long did it take for your insurance company to approve the procedure?” And it’s months. And often what they tell me is they approved it, and then they denied it after they approved it. And they have to go through all of this rigmarole that just doesn’t make sense.

Rovner: You think that Congress is going to need to step in at some point, or is this something that can be worked out?

Ehrenfeld: I think we’re going to have to have regulatory relief from Congress, and we’re pushing for that through our grassroots network. Certainly, we try to bring all the third-party payers together. We have a set of principles that, theoretically, third-party payers have agreed to, and yet they ignore them, and they continue to just harass patients, really to improve their bottom line, but not doing what’s in their best interests.

Rovner: So I want to talk a little bit about physician autonomy. Since the overturn of Roe v. Wade, we’ve seen an increasing level of what I call legislators practicing medicine. Now we have the Supreme Court …

Ehrenfeld: It’s OK if they have an MD.

Rovner: [laughs] That’s true. Now we have the Supreme Court — none of whom have an MD as far as I know — about to decide whether doctors facing women with pregnancy emergencies should obey state abortion bans, the federal EMTALA law, or their medical ethics, all of which may conflict. What’s the AMA doing to help doctors navigate these very choppy and changing legal waters?

Ehrenfeld: “Choppy” is a good word for it. It’s confusing. And since the decision, the Dobbs decision, came out, we have been working with all of our state and federation partners to try to help physicians navigate this. And I can tell you, it’s unbelievable that now physicians are having to call their attorneys, the hospital legal counsel to figure out what they can and can’t do. And obviously, this is not a picture that is a picture that supports women’s health. So we are optimistic that we might get a positive ruling with this EMTALA decision on the Supreme Court. But, obviously, there’s a long way that we need to go to make sure that we can maintain access for reproductive care.

Rovner: You’re younger than I am, but when I was growing up and covering this, the AMA didn’t want to talk about abortion because it was controversial. And now, certainly in the last five or 10 years, the AMA has come out. Do you think that’s something that has dawned on the rest of the members of the AMA that this is not necessarily about abortion, this is about the ability to practice medicine?

Ehrenfeld: Well, you know, look, if you look at some of these socially charged restrictive laws, whether it’s in transgender health or abortion access, or other items, we take the same foundational approach, which is that physicians and patients ought to be making their health care decisions without legislative interference.

Rovner: So it’s not just abortion and reproductive health where lawmakers are trying to dictate medical practice but also care for transgender kids and adults and even treatment for covid and other infectious diseases. How big a priority is this for the AMA, and what are you doing to fight the sort of “pushing against” scientific discourse?

Ehrenfeld: Well, we will always stand up for science. And it’s so important that as an association we do that. Our foundation in 1847 was to get rid of quackery and snake oil salesmen in medicine. And yet here we are trying to do some of those same things with misinformation, disinformation. And obviously, even if you look at the attack on PrEP, preexposure prophylaxis for HIV prevention — you know, an important part of the Affordable Care Act, right? Making it basically zero out-of-pocket cost for many Americans — those things are just unconscionable. We have treatments. We know that they work. We ought to make sure that patients and their physicians can have access to them.

Rovner: What about doctors who are pushing things that you know to be not helpful?

Ehrenfeld: We call them out, and we would encourage others to call them out. If somebody is trying to sell something that’s inappropriate or do something that doesn’t follow the evidence, we need to call it for what it is, which is inappropriate.

Rovner: It’s not just legislators who want to practice medicine these days. We also have the rise of artificial intelligence, which I know promises both huge advances …

Ehrenfeld: I’m real, by the way.

Rovner: [both laugh] Yes, I can attest that you’re real. At least you seem real. But, obviously, our artificial intelligence can portend huge advances and also other issues, not all of which are good. How is the AMA trying to push the AMA more towards the former, the good things, and less towards the latter, the unintended consequences?

Ehrenfeld: Well, we’re really excited about it. I’m excited about it. I have an informatics background. So, you know, I believe that there is so much power that these technologies and tools can bring, but we need to make sure that the technology is an asset, not a burden. And we have all lived through the painful rollout of electronic health records where that just was not the case. So we did survey — we do routine surveys, data that’s a nationally representative sample — in August of this year, it’s on our website. An equal number of physicians are excited about AI as they are terrified about AI, anxious, concerned, right? And we need to make sure that we have the right regulatory framework. We’re very appreciative of the ONC [Office of the National Coordinator for Health Information Technology] rule that came out, out of HHS [the Department of Health and Human Services], at the end of last year. Certainly, the Biden administration’s, whole of government’s approach we think is important, but that is no substitution for regulation. And we need to make sure that we have appropriate regulation. The FDA doesn’t have the framework that they need. The system set up in the ’60s and ’70s for drugs and biologics and devices hasn’t held up. So we know that there have to be changes. We just need to make sure that those changes only let safe and effective algorithms, AI tools, AI-powered products come to the marketplace.

Rovner: Dr. Ehrenfeld, that’s all the time we have. Thank you so much for joining us.

Ehrenfeld: Oh, thanks for having me. It’s been a treat.

Rovner: OK, we are 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. Tami, why don’t you go first this week?

Luhby: OK. Well, my extra credit is titled “Most People Dropped in Medicaid ‘Unwinding’ Never Tried to Renew Coverage, Utah Finds,” by KFF Health News’ Phil Galewitz. And as many of our podcast listeners know, states are reviewing the eligibility of their residents in Medicaid and terminating the coverage of those they deem ineligible. Roughly 14.4 million people have been disenrolled. And the big question is, what has happened to them? Did they return to Medicaid? Did they find coverage elsewhere, or did they become uninsured? And that’s the question that many actually Medicaid directors have been unable to answer.

So Phil’s story looks at a first-of-its-kind study conducted in October by Utah’s Medicaid agency. And in Utah, 94% of those disenrolled were dropped for procedural reasons, such as not returning their paperwork, rather than being deemed ineligible. And the study found that 57% of respondents did not attempt to renew their Medicaid coverage. Thirty-nine percent shifted to employer plans, and 15% signed up for Affordable Care Act coverage. So they remained insured, but 30% became uninsured. The story also shows that many Medicaid enrollees said that they had trouble reapplying for Medicaid coverage. They didn’t get the documents. They didn’t have the necessary paperwork. They couldn’t get their questions answered. And these are all things that we’ve heard about anecdotally, but the Utah study and Phil’s story actually put some numbers to it. And interestingly, Utah officials also confirmed that the U.S. Department of Health and Human Services is conducting two audits of the state’s Medicaid unwinding. So we’ll see what happens and what we find out from Utah may inform us about what’s happening in the rest of the country.

Rovner: Yes, we have noted before that HHS has been very close-mouthed about how it is trying to get states to maintain coverage for these people who are, if not eligible for Medicaid anymore, eligible for something else. Alice, you have kind of a related story, so why don’t you go next?

Ollstein: Yeah, I have something from our own Rachel Cohrs at Stat. It’s called “Texas Taxpayers Wanted to Help the Poor Get Health Care. Instead They’re Funding a Medical School at a Wealthy University.” It’s a great accountability story about how taxpayers were convinced to put up tens of millions of dollars that they thought was going to provide care for very poor people in the area around Austin, Texas. And instead, basically, none of that money is going to … directly to provide that care to people. And instead, it’s gone to build fancy buildings at this medical school, and overhead, and recruiting faculty. And the school and hospital insist that all of this trickles down eventually to patients. But it’s not what taxpayers feel they were promised. And so they’re getting upset about that.

Rovner: It is a very nice medical school. Sarah.

Karlin-Smith: I looked at a New York Times story from Christina Jewett and Benjamin Mueller, “The F.D.A. Warned an Asthma Drug Could Induce Despair. Many Were Never Told,” and it’s about Singulair, a now generic asthma medicine. Over 20 years after it was first approved, FDA added what’s known as its strictest warning, a black box warning, warning of very serious mental health side effects, including suicidal thoughts. And The New York Times investigation seems to have found out that really these messages are not reaching doctors. They’re not reaching patients, or parents, and many young kids who are taking this medicine. And that has led to many ill effects, including some very young people who have died by suicide. And it’s a really good dive into the challenges that FDA faces and kind of translating their regulatory action into something that then gets communicated to a doctor, and then a doctor translates to a patient. In many ways, it’s not that surprising a story to me because I think it’s kind of well known that not a lot of people read drug labels and then certainly not on an individual level, but even on a doctor level. And I think a lot of the risk-benefit conversations that FDA envisions happen between doctors and patients before people take drugs don’t actually happen in the real world. I once actually had a doctor who told me, “This medicine has a box warning, but don’t worry about it.” Which I always find as a pretty funny story as a drug reporter. And it just also raises a lot of issues, this story, about how drugs are studied on children and what’s done to make sure that as a drug goes generic, the safety is still being monitored, and somebody is responsible again for ensuring people are aware of new safety updates. So it’s a really good dive. I think the thing I was most struck by, though, is I think the solutions perhaps here are not ones that would be very popular in the U.S., which is that by design, the FDA does not regulate the practice of medicine. And, in most cases, I don’t think Americans would want FDA pushing the boundaries much further to get at the safety hurdles this story maybe flags.

Rovner: Yeah. More along our theme of the federal government and its role in society. Well, my extra credit this week is actually a collection of stories. It’s sparked by the headline on this month’s issue of Consumer Reports, which is “How to Eat Less Plastic.” The first story is from CNN reporting on a study in the proceedings of the National Academy of Sciences called “Bottled Water Contains Thousands of Nanoplastics So Small They Can Invade the Body’s Cells, Study Says.” And it basically says that plastic sheds just like skin cells do. So anything you eat or drink that’s stored or wrapped in plastic is going to get into whatever it is you’re putting into your body. If that’s not enough to give you pause, my second story is from ScienceAlert, which is a website, called “It Turns Out Paper Straws Might Pose a Serious Problem Too.” And it’s about a study that found that many paper straws contain those forever chemicals we keep hearing about, called PFAS, which, of course, are also in many plastics. Finally, if that’s not enough plastic for you, here’s a story from The Washington Post called “How Plastic Hides in Supposedly Eco-Friendly Laundry Products.” Basically, those laundry sheets that can replace the use of all those plastic bottles that we keep seeing ads for? Apparently, even many of those sheets that claim to be, quote, “plastic-free” contains something called polyvinyl alcohol, which is, you guessed it, a plastic that’s been found in drinking water and breast milk. I think the message here is everything you do is probably bad for you in some way, so be humble and do the best you can.

OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our technical guru, Francis Ying, and our editor, my fellow happy Michigan Wolverine this week, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner, or @julierovner at Bluesky and @julie.rovner at Threads. Sarah, where are you these days?

Karlin-Smith: I’m trying to be places, but then it’s hard to be at all of them. So mostly Twitter and Bluesky, @SarahKarlin or @sarahkarlin-smith.

Rovner: Tami?

Luhby: The best place to find me is cnn.com.

Rovner: There you go. Alice.

Ollstein: Still on X @AliceOllstein, and @alicemiranda on Bluesky.

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

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In this episode of “An Arm and a Leg,” Dan Weissmann goes toe-to-toe with Scott Purcell, CEO of ACA International, a trade association for the collection industry, on the effects these lawsuits have on patients.

With help from The Baltimore Banner and Scripps News, Weissmann pulls back the curtain on hospital bill lawsuits in three states — Maryland, Wisconsin, and New York — and discovers some good news for a change.

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Transcript: ‘An Arm and a Leg’: When Hospitals Sue Patients (Part 2)

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there – So, this is part two of a two-part story. If you missed part one, or just want a refresher, here’s three quick things: 

First: Some hospitals – definitely not all – sue a LOT of patients over unpaid bills. Hundreds or even thousands every year. 

Second: There’s very little money in it for these hospitals. When reporters and researchers add up the total amounts they’re suing for, it looks tiny compared to, say, their annual surplus. Or what they pay executives. Tiny.

Third: There’s data showing a LOT of the people being sued are … pretty hard up already. 

That a lot of them would qualify for charity care under the hospitals’ own financial-assistance policies.

In fact, as we reported last time, a guy named Nick McLaughlin, who spent a decade working for a medical-bill collections agency… now runs a business telling hospitals they’d be better off – financially – writing these bills off through charity care or financial assistance programs. 

And I should point out: Nick’s not a do-good crusader. He has started a business, to help hospitals do this. And he’s staked his family’s financial future on it.

Nick: I had a good but challenging conversation with my wife. And she said, hey, so is the reason we’re not doing this full time because we’re scared the money’s not gonna come in? And I said, well as the sole provider of a family of five that’s kind of a big deal. She said, yeah, I think we should do it.

Dan: And at the end of our last episode, I asked Nick: So, why would some hospitals make the decision to sue people, if there’s no money in it? What’s behind that decision:

Nick: It’s really, I would say, philosophically based.

Dan: So, in this episode, we’ll do two things: One, we’ll try to get a peek at that philosophy – inside the heads of the people who might hold it.

And TWO: We’re gonna share some hard data about what’s going on with these lawsuits in three states. We partnered with two awesome news organizations to get this data. 

And I’m gonna tell you: we found what really looks like some good news.

And the whole inquiry really drove home ways we can help ourselves, and each other. 

Here we go.

With Scripps News and the Baltimore Banner, this is An Arm and a Leg – a show about why health care costs so freaking much, and what we can may be do about it. 

I’m Dan Weissmann. I’m a reporter, and I like a challenge. So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life and bring you something entertaining, empowering, and useful.

So, let’s talk about that philosophy. You could call it a form of… not thinking too hard. Let’s start with a witness. 

These days, Ruth Lande works for a nonprofit you may have heard of – RIP Medical Debt – to get hospital bills forgiven.

But WE talked with her because she spent more than 25 years working in hospital billing, most of it at Memorial Sloan-Kettering Cancer Center. And by the way, she loved it.

Ruth Landé: In general, I think it’s good if a job has three things. It’s for a good mission. Two, it should be hard. It should be complicated so it engages your brain every day. And third, it should be with really good colleagues. And I got to tell you, working revenue cycle satisfied all three of those for me. 

Dan: And of course, during her quarter-century in the business, the question of whether or not to file lawsuits over hospital bills did come up. 

When she got a promotion. 

In her earlier role, she’d run one part of the billing department, where they never sued. Now she was taking over another part of the billing department, a bigger one, where sometimes they did. 

She says her new colleagues were aware that in her earlier position, she’d taken a no-lawsuits approach.

Ruth Landé: There was an assumption, oh yeah, Ruth won’t allow that. 

Dan: But, she told me, she didn’t want to be in conflict with her new colleagues from Day One. 

Ruth Landé: And so I said, well, I’m not going to just ban it, but you know, bring me cases. If you believe that we should be suing a person, then just bring me the case so I can review it. And they never brought a case to me ever. 

Dan: Never ever. She thinks those colleagues maybe hadn’t stopped to look at who they were suing.

Ruth Landé: When you really examine closely you see the harm. I They would have probably imagined that they’re only suing some really rich people sitting up in a mansion somewhere, not bothering to pay their bills.

You might imagine: It would be interesting to talk with someone who thinks this way – really talk with them, push them on their point of view.

And that did happen. Kind of. 

It was honestly one of the most confusing conversations I’ve ever had. It was with this guy. 

Scott Purcell: My name is Scott Purcell. I’m the CEO of ACA International.

Dan: That’s the industry association for folks in the bill-collection business. Scott was super-accommodating – got on Zoom with me within a day of my first email to him. So quickly that it wasn’t till we got on that I realized we hadn’t set a length. 

Dan: How long do I actually have you for?

Scott Purcell: How long do you need us for?

Dan: Uh, I like to talk to people for a long time, but we start with a half an hour and maybe…

Scott Purcell: um, bum bum bum. I just need to change one meeting. 

Dan: We talked for more than an hour. 

The first half-hour was one kind of frustrating. 

I’d describe our findings and findings from other people’s reports — for instance, how little money hospitals seem to gain from these lawsuits — and ask if he had data to help understand what we’re seeing, and he kept saying, effectively: 

Hey, let’s not jump to policy conclusions. How would a new policy on debt collection affect a medical office with just three doctors? 

Scott Purcell: And I would say that three person doctor office is different from one of the top 10 nonprofit health care system. Their economics are completely different. And yet we’re talking about policy positions. that impact both

Dan: And then, in retrospect I’ve figured out a spot where we really, really lost each other. I was talking about one observer’s take on why these lawsuits don’t bring in much money:

Dan: A lot of the people that end up as your defendants are effectively indigent. Um, you know, they don’t have a lot of income. They may not have W2 employment that you could garnish. They don’t have other assets you can take. So, the amount that you get is not, not what you might expect from looking at the number of cases and the number of judgments. So that was another…

Scott Purcell: If I could stop you there, I’d love to see that data. Do you know that it takes a lot of money to file a lawsuit? I can’t think. And so my lived experience, I cannot think of one instance where either the hospital or the collection agency or the attorney would choose to sue an indigent person because if they are going to have a low probability of being able to repay that that over time, why would you invest? 

Dan: What I didn’t realize then, was: when I said some people were “effectively indigent,” Scott Purcell had latched onto the word “indigent” and had a very specific image in his mind, of absolute destitution. From that point forward, anything I would say about people being sued who were hard up, who qualified for charity care, who really couldn’t pay – was gonna run through this filter. 

And: Any example I’d bring up of someone being sued who got put in an extremely tough position… was just gonna sound to him like a novel anecdote.

A half-hour in, I got pretty direct with Scott, so I asked:

Dan: How did this happen? How did it happen that we, like, got to the point where so many people are being sued over debts they can’t pay? What do you know about that?

And this is where things got really confusing to me. Because here’s how Scott responded:

Scott Purcell: Well, if you just sued somebody who can’t pay, they’re not going to pay you. So, they’re not out any money. So you made a bad business decision, but truly Dan, what is the harm they’re experiencing? The fact that they got sued and they can’t pay?

Dan: I didn’t see that coming – the idea that being sued could be “harmless”?. Here’s what I said:

My gosh. Well, I can tell you that, you know, people, by the time they’ve been sued, they’ve been getting tons of collections calls, their credit may have suffered, and they have a judgment against them that says like any money that shows up in their bank account can be seized or that, you know, the next time they get a job, their wages can be garnished. That’s pretty significant harm. 

I described to Scott the story of Liz Jurado, a woman on Long Island who says she found out, years after the fact, that she had been sued over a bill relating to the birth of one of her kids. A bill she says she thought insurance had paid. Her husband was the main breadwinner, until he got laid off. Liz took a job working for DoorDash to support the family – her first W2 paycheck – and she says that’s how she found out about the lawsuit. Because once she starts the job, she starts getting letters, saying her wages are going to be garnished. And she’s like:

Liz Jurado: What is this? Where did it come from? How could they not tell me about it until now?  I get a job and three months later, you’re coming after me. I mean, this is my family’s bread and butter.  This is horrible.

Dan: I said to Scott: That seems bad, right?

Dan: So I’m, I’m, I’m trying to give you the opportunity to respond to that point that lots of people make that. If you get sued over a debt you can’t pay, there’s harm. That’s, that’s a lot of people’s positions, and I find it fairly persuasive. How do you respond to that? 

Scott Purcell: You and I were using a hypothetical. You said somebody got sued who’s indigent. Has no money.

Dan: Do you think that doesn’t happen?

Scott Purcell: I don’t understand the business case as to why that would. 

Dan: But, like, do you think it doesn’t happen because, like, do you think the reports that show that it happens a lot are wrong? I mean, I talked to a couple, a couple months ago who got sued over a debt. I mean, their story was like, they got hit with a bunch of medical problems.

I described to him the story of Casey and Ron Gasior, who we met in our last episode. The bills for those medical adventures threw their finances completely out of whack.

Casey: We would dig little bit out of our hole, and then we’d go right back down. 

Dan: … until they were in danger of losing their house. They filed for chapter 13 bankruptcy – wrapping everything they owed into a five year payment plan. They’d just about made it through, when they got a letter from a law firm earlier this year: They were being sued over a medical bill, that had arrived just after their bankruptcy started. I was getting a little worked up. 

Dan: So, these are not hypothetical, and these are not, like, you know, these stories are just entirely consistent with the data that, that gets collected. So, when you ask me, like, what’s the harm? I want to give you this opportunity to say, like, you sure that’s your position?

Scott Purcell: So, first of all, that was on a different, that was a different question. I made an assumption of that story that they were indigent now and would be indigent – I was saying, I don’t know why that decision got made if indeed that person, um, is indigent, why a particular, um, provider has whatever parameters they’ve set for their lawsuit program. I can’t speak to the business decisions they’re making. I can speak to, societally, what do we expect people to pay and not pay? 

Dan: With the case of the couple in Wisconsin, if they couldn’t pay ever, if their chapter 13 hadn’t worked out, and they’d lost their house, and they’d lost their jobs, and they couldn’t pay ever, are you saying they wouldn’t be harmed?

Scott Purcell: I’m saying the answer lies in taking those stories to the table. And let’s take a look at what are the other policy changes that should be made in order to get better outcomes. So, in the situation you did outline, I am sure that individual actually went through emotional stress. But there’re safeguards throughout. 

Dan: So you’re saying you view this as a kind of exceptional case and that generally there are, from what you know, guidelines and guardrails, as you say, to prevent this sort of thing from happening.

Scott Purcell: It’s the thing I don’t have data to answer it. 

Dan: Yeah, it’s — I mean, I just need to say: It’s striking, um, that you asked — you’re, yeah, like: Where’s, where’s the harm?

Scott Purcell: I made an assumption of that story that they were indigent now and would be indigent–

Dan: Well, I guess I just don’t understand, I, I don’t really quite understand the difference. Can you explain the distinction between someone being indigent right now, being indigent forever, I don’t really get the distinction at all. And I don’t know in which case, in which case there is harm, in which case there isn’t in your view.

Scott Purcell: So, um, I wasn’t being flippant. I was taking a very extreme… um, I’m in D.C. I see homeless people now. So when I heard you say indigent, I’m thinking somebody who’s living under a bridge. They deserve to be treated with dignity and respect. I was thinking that level of indigency. You’re talking about, I think, the, the working class, and people beyond that. And up to the higher end scale is your question. And for that, my question or my answer is back to there are safeguards that should be occurring. And if those safeguards don’t occur, harm does happen. And we collectively need to look at why there are gaps in those safeguards.

Dan: So in retrospect – knowing how Scott Purcell took that word indigent – I’m a little less mystified. But the conversation still seems really… striking to me.

For one thing, there’s the idea — even if it’s not a conscious philosophy  — that some people are beyond hope, so they’re beyond harm. So morally, it wouldn’t matter if, say, you sued them.

But the other thing that strikes me is the difficulty Scott Purcell had understanding – believing – that people being really harmed is something that happens at scale. That last thing he said: “There are safeguards that should be occurring, and IF those safeguards don’t occur, harm does happen.”

That word “IF” seems to be doing a lot of work there. 

Beyond the mountains of data that folks have compiled – showing that people get sued who qualify for charity care, and that people who get sued over medical bills tend to live in neighborhoods where poverty is high – there’s the finding that’s practically a cliche: 

About four out of ten Americans don’t have enough money on hand to cover a 400 hundred dollar emergency expense. Maybe I should have explained that to Scott Purcell. 

But I just didn’t think I’d need to. He’s sitting atop a whole industry that NEEDS to know, basically, how much money people have. Since we talked, I’ve seen a report for folks in his industry – third-party collections – that goes into a lot of detail on that topic. 

Of course, third-party collections agencies are for-profit businesses. And at least for some of them, lawsuits like these are part of the business. 

So, I guess I’m starting to understand – maybe belatedly – how hard it is to get some people to reconsider business as usual. Is business as usual a philosophy?

But sometimes business as usual does change. In fact, I’m about to share some much more cheerful news with you. It’s what our partners found when we went looking for details on these hospital bill lawsuits in three states. 

Because the big surprise was in what we DIDN’T find.

That’s coming right up. 

This episode is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health care in America. Their incredible journalists win all kinds of awards every year. I’m so glad to get to work with them. 

This investigation builds directly on reporting by KFF reporters like Jay Hancock, Noam Levey and Jordan Rau. Respect. 

OK, so this whole inquiry — into why some hospitals sue so many patients who could just get charity care — started a couple of years ago. 

That’s when I spotted what looked like a clue – in a big report done by National Nurses United. It looked at 145 thousand hospital lawsuits against patients in Maryland over a ten-year period.

And in addition to documenting how little money hospitals were getting from these suits — compared to the million-dollar salaries they paid a lot of executives — 

This report also noted– just kind of by-the-way, on page 18 of a 68-page report – that a relatively small number of attorneys were filing most of these lawsuits.

Just five attorneys filed almost two-thirds of the cases.

And just one attorney filed more than 40,000 cases. 

I was like, huh! Maybe that’s a clue. 

It seems like hospitals don’t get a lot of benefit from these lawsuits. But maybe we’re looking at someone who does. We should find out more. 

Starting with the names of those lawyers, which weren’t in the report.

And I was gonna want a big update on Maryland.

That report was part of a big advocacy campaign – which really worked. 

In 2021, Maryland enacted a new law saying hospitals couldn’t sue anybody without checking to see if they qualified for free care.

Which in retrospect, may seem like an obvious requirement. Here’s Malcolm Heflin, one of the organizers who worked on the campaign.

Malcolm Heflin: It’s like reading the postscript in a Dickens novel almost. It’d be like, “Oh yeah. Hey, look, now we can’t chain children to factory machines.” Like what? Wait, what? That was legal before? 

Dan: Anyway, if that report was the “before” picture, what would “after” look like? I was gonna need help. And I got some.

Ryan Little: my name is Ryan Little and I am the data editor at the Baltimore Banner.

Dan: The Banner is a new nonprofit daily newspaper – without the paper. Data reporting is a big specialty, and Ryan is the big specialist. Pulling a LOT of Maryland courts data was already on his to-do list.

Ryan Little: And so I said, maybe there’s a way that we can make a partnership happen. And then many months later, you’ve probably regretted that, but we’ve had a good time doing it. Anyways…

Dan: No way. Are you kidding me?

Ryan’s amazing. I am so lucky to get to work with him. 

But I wanted to know about more than just Maryland. And I got lucky there too. 

Maryland’s not the only state where advocates compiled a bunch of court data to push for change. You might remember Elisabeth Benjamin in New York from our last episode. 

She’s the one who pointed out how little money is involved in these suits – for hospitals she has looked at.

Elisabeth Benjamin: They’re suing people for pennies. right. The average law suits maybe 1900 bucks. So they’re suing them for chump change, but that $1,900 is like life ruining for the patient.

Dan: She knew that because she had pulled more than 50 thousand hospital-bill lawsuits from across the state. She used that data in a series of reports that got new laws passed – like one banning wage garnishment to pay medical debts. 

And she shared a giant spreadsheet with me, which included the names of attorneys in 40 thousand cases.

And guess what? Just three law firms handled the majority of those cases. So now we knew: This wasn’t just a Maryland thing.

But we were gonna want to look somewhere else too. Someplace where no new laws had been passed. Someplace that was still a “before” picture. Someplace like Wisconsin.

I’d been getting reports from a public-interest lawyer there named Bobby Peterson. He’d been publishing some data about lawsuits, but hadn’t gotten laws passed. And he also wasn’t able to share data. I was gonna need MORE help. 

Rosie Cima: My name is Rosie Cima and I manage a data reporting team at Scripps News. I also report for them. 

Dan: YES! More data help. Scripps News came aboard as a partner, and Rosie started looking for the data we’d need in Wisconsin.

And at this point, it may be getting clearer why it has taken us more than a year to bring this story to you. Let’s just recap for a second all the moving parts we’ve got in play here:

We’ve got Ryan, pulling cases in Maryland, Rosie doing the same in Wisconsin, and me with some New York cases.

We’re looking to see what the “after” picture looks like in Maryland and New York, and we’re looking at the role of a few lawyers.

And this is where I admit: that initial hypothesis? That the lawyers were driving these lawsuits, sweet-talking hospitals to drum up business?

It didn’t really pan out. As far as I can tell, after talking with a bunch of people and looking at a bunch of reports, it doesn’t seem to work that way. 

A lot of the time, anyway, it seems like the lawyers are often freelancers. They get hired by the collection agencies.

Who get their marching orders from the hospital revenue office.

But I’m so glad we went looking, because of what we did find. 

Or, you could say, what we didn’t.

In Maryland, Ryan spent months and months and months collecting hundreds of thousands of cases, then weeks and weeks crunching the numbers. And then… 

Ryan Little: On Wednesday, September 6th, I sent this email. I find this hard to believe. But it may be that there were zero medical debt lawsuits filed by hospitals against individuals in 2022 and 2023. 

Dan: He found it hard to believe – like, it must be wrong – so he went back to try to find his mistake. That took almost a week.

Ryan Little: On Monday, September 11th, I emailed, Hey Dan, news that hospital debt collection lawsuits had ended in Maryland was wrong. It looks like the Maryland Judiciary is somehow suppressing them in case search. Either intentionally or not, I’m rewriting the code to account for this.

Dan: He thought the Maryland court system was HIDING these cases. Not only did he rewrite the code, he went to the courthouse to go hunt for whatever was missing. 

It took him another week. And then I got one more email.

Ryan Little: So on September 18th, I said, Maryland hospitals are dot, dot, dot. Basically not suing anyone for medical debt anymore. 

Dan: Basically not suing anyone for medical debt this year. WOW. I mean, we had expected a significant drop– if only because Maryland had passed that 2021 law, which required hospitals to see if people were eligible for charity care before suing them. 

But zero was a much bigger drop than we’d expected. 

Next stop, New York. A few months ago, we looked at those three law firms – the ones that handled the majority of hospital-bill cases there. 

And as far as we could tell, two of them were just not doing any work for hospitals at all anymore.

But OK, again: We’d expected an “after” picture in both these states. What about Wisconsin?

Well, for one thing, it turned out to be TOUGH. 

Rosie Cima: When we took this on the first time, it definitely seemed like it’d be a lot easier than it ended up being. 

Dan: You can pull some case data from the web, but there’s a problem: Once a case has been dismissed, it gets taken off that website after a few years. 

Rosie Cima: So all the data that we had from before 2020 was missing some unknown number of cases

We can laugh about it now, but that sucked. We did find some guys who had data on older cases socked away. From them, we got the full caseloads for two lawyers we’d heard did a lot of medical-bill lawsuits.

Rosie Cima: We found more than 8000 cases in one year, um, for two lawyers, 

Dan: That was 2019. Pre-pandemic. 

Rosie Cima: And in 2022, There were fewer than 1400 for both of them.

Dan: In other words, these two lawyers were doing less than a quarter as much medical-bill business as they’d been doing three years earlier.

And Rosie pulled numbers year by year, client by client, which was super-revealing. 

Because for both of them, many of their biggest clients – hospitals and medical practices for whom they had been filing hundreds of cases a year – weren’t filing any cases.

Which wasn’t totally conclusive. We knew these lawyers were getting less work…

Rosie Cima: The thing that we didn’t know was, like, whether, Hospital A had stopped suing, or whether they just stopped hiring this lawyer.

Dan: Right. So Rosie went back to the public data website to see whether those hospitals A, B, C and so on were suing. And for the most part, they weren’t — at least not like they used to. 

Rosie Cima: Yeah, we now know that those cases weren’t going to a different lawyer. Right? They’re just not, they’re just not being filed.

Dan: Just not. Being filed. And it wasn’t just the hospitals that had been using these two lawyers that had fallen away. Other hospitals that had been suing tons of patients had cut way back. 

From more than a thousand in 2019 to a few dozen, or less than a dozen. Or one. Or zero. 

One hospital system sued more than 47 hundred people in 2019. In 2023 so far, they’ve sued one.

And remember, because older cases get wiped from the web, there’s some unknown number of cases from 2019 we aren’t seeing. The decline is probably bigger than what we see.

So, one thing to say is: We don’t know WHY this is happening. In any of these states. Our colleagues at the Baltimore Banner called every hospital in Maryland to ask about these changes, and got a bunch of no-comment. We emailed dozens of hospitals in Wisconsin and basically got the same answer.

So we’re left with some guessing – and here are some of our best guesses: 

Those new laws in New York and Maryland didn’t outlaw lawsuits… but the Maryland law made them more difficult, and the New York laws made it harder to collect. 

And the campaigns that led to those laws brought a LOT of negative attention to hospitals that filed a lot of lawsuits. So one way or another, it seems like a lot of hospitals decided it wasn’t worth it.

And in Wisconsin? Laws didn’t change, but the reports that the lawyer Bobby Peterson put out there did get some attention locally. 

We know in Wisconsin, lawsuits halted altogether for a while when the pandemic started. Maybe hospitals noticed that they weren’t exactly losing a ton of money when that happened?

Here’s one last data point from Rosie. She looked closely at the cases she had for those two lawyers from 2019. The ones where the hospital was awarded a judgment.

Rosie Cima: We found that the majority of those awards were never fulfilled, like, I, I feel like that’s important, a judge said, yes, you defendant owe this case. company, the plaintiff, this much money and in a lot of cases, the plaintiff hasn’t paid out. And it’s been years.

Dan: Which I don’t think is evidence that “Wow, these folks were really good at dodging payment!” No, because in a lot of these old cases, the judge gave an OK to garnish these folks’ wages: To take money directly from their paycheck.

So if these debts haven’t been paid, years later – and remember, these are often amounts of a thousand dollars or less – it seems like these folks may be earning so little that garnishing their wages for years doesn’t get you much. 

So, to start wrapping up: There’s a TON we don’t know. For one thing, there’s 47 other states we haven’t looked at. And we don’t know if hospitals in these three states will start suing again, when they think nobody’s looking.

But here’s something I do know: A surprising number of those other states have been passing new laws and regulations in the last couple years, to prevent hospitals from filing so many lawsuits against folks who qualify for charity care: 

Illinois, Arizona, Colorado, Minnesota, Washington, Oregon. I’m probably missing some. 

But here’s the single biggest thing I’m taking away from this whole adventure: A LOT more people qualify for charity care– free or discounted care from the hospital– than we think.

And we can help ourselves and each other, just by spreading the word.

I called Casey Gasior in Wisconsin a couple weeks ago. It wasn’t a great day for her.

Casey: Everybody in my house is sick and I just tested positive for covid. And now we’re going to lose work time.

Dan: Right.

Casey: I tell you, it never ends.

Dan: I was calling because I knew: Casey and her husband Ron have had more medical adventures this year. More knee trouble for him, emergency surgery for her, time away from work and lost income for both of them. And thousands of dollars of new medical bills. 

I said to her: It seems like maybe you and Ron might qualify to have some of those bills forgiven through charity care.

Casey: I think my, my husband makes too much. 

And I was like, well, maybe. But as we learned from Nick McLaughlin in our last episode, almost 60 percent of Americans qualify for charity care at a bunch of hospitals. 

And the nonprofit Dollar For has created a database of the charity care policies of almost every hospital in the country – and they’ve built it into their website. 

So you can type in a few details – where you were treated, how much you make – and it’ll tell you whether you’re likely to qualify for help.

Dan: So, I’m looking at their website right now.

And would it be okay with you to just kind of walk through kind of what they’re asking you, what they, um…

Casey: Yeah, sure.

Dan: Questions included: Where’d you get seen, and when?

Casey: Um, my surgery was July 24th.

Dan: Casey and I went line by line, filling out the form. I had her hunting for tax returns, and other documents

Casey: Hey, Ron. Can you send me a, um, a pay stub? Can you send me a picture of it? Like, now?

Dan: Okay. Alright, I’m going to add those up. There we go.

And yeah, so Dollar For thinks that you would qualify, 

Casey: Wow. That surprises me. 

Dan: This is good.

Casey: This is really…

Dan: Yeah. I’m really glad that we took this step.

Casey: Yeah, me too, because I was kind of, I didn’t know where to go and like, it, it seems so weird asking for charity.

Dan: But Casey was ready to take the next step.

Casey: Now this application that I’m filling out now do I have to do one for myself and one for Ron. 

Dan: Yes. Yeah. 

Casey: Okay, I’m going to work on this

Dan: Okay. Fantastic.

And this is a thing that we can do for ourselves, and each other. Spread the word: The majority of people qualify for at least some charity care – at least partially wiping out your bill – at a LOT of hospitals. 

The Dollar For website is set up to tell you if you’re likely to qualify, and to help you apply. They’ve also got actual human beings on staff to help if you get stuck.

Their website is Dollar For – that’s Dollar F-O-R dot org. Dollar F-O-R dot org. 

And that is our story. We never got all the way to the bottom of the question of WHY these bulk lawsuits happened – or why they seem to have stopped in some places – but we did get a peek into the process. 

And we learned some things that are heartening – a lot fewer lawsuits in these three states!

I’ve learned a lot more, along the way – there’ll be follow-ups. 

This has been a HUGE project for our little outfit. We got a ton of help from our partners, and we put a TON of resources into it: Travel to Wisconsin and Michigan, MONTHS of phone calls, 1600 bucks to get court records. 

We’ve been able to do that because you’ve been supporting us– giving us the resources to do the job. And this is the absolute best time to pitch in: 

Every dollar you give is matched. A few generous Arm and a Leg listeners have put up more than 10 thousand dollars in matching funds ON TOP of what the Institute for Nonprofit News does through their NewsMatch program – and I want to max it out. 

The place to go is Arm and a Leg Show, dot org, slash support. And there’s a link in the show notes – pretty much anywhere you’re listening to this. 

We’ll be back next week with a quick little coda to this story.

Meanwhile, thank you so much for helping us make this show. I’m gonna give that address one more time: Arm and a Leg show dot com, slash support. 

I’ll catch you next week.

Till then, take care of yourself.

This episode of An Arm and a Leg was produced by me, Dan Weissmann, with Emily Pisacreta and Bella Czakowski. 

In partnership with Scripps News, thanks to Rosie Chima, Amber Strong, Claire Malloy, Jacqueline Baylon and Zach Toombs and the Baltimore Banner, thanks to Ryan Little, Meredith Cohn, Brenna Smith and Kimi Yoshino and the McGraw Center for Business Journalism at the Craig Newmark Graduate School of Journalism at the City University of New York, with thanks to Jane Sasseen.

Our work on this story is supported by the Fund for Investigative Journalism, and edited by Ellen Weiss. 

Big thanks also to Jared Walker, Bobby Peterson, Luke Messac, Jeff Bloom, Emily Stuart, Berneta Hayes, Matt Szaflarski, Amanda Dunkler, and Marceline White! Plus Barry and Jo from Court Data Techologies, in Wisconsin.

Gabrielle Healy is An Arm and a Leg’s managing editor for audience – she edits the First Aid Kit newsletter.

Sarah Ballema is our Operations Manager. Bea Bosco is our Consulting Director of Operations.

An Arm and a Leg is produced in partnership with KFF Health News. 

That’s a national newsroom producing in-depth journalism about health care in America, and a core program at KFF — an independent source of health policy research, polling, and journalism. 

You can learn more about KFF Health News at arm and a leg show dot com, slash KFF. 

Zach Dyer is senior audio producer at KFF Health News. He is an editorial liaison to this show. 

Thanks to the INSTITUTE FOR NONPROFIT NEWS for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about INN at I-N-N dot org. 

And thanks to everybody who supports this show financially. 

If you haven’t yet, we’d love for you to pitch in to join us. Again, the place for that is arm and a leg show dot com, slash support.

And now, time for one of my favorite parts: Shouting out some of the folks who have made donations since our last episode. Thanks this time to…

[DAN READS NAMES]

Thank you so much!

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

This episode was produced in partnership with Scripps News, The Baltimore Banner, and the McGraw Center for Business Journalism at the Craig Newmark Graduate School of Journalism at the City University of New York.

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The Host

Julie Rovner
KFF Health News

@jrovner

Read Julie's stories.

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

Even without covid dominating the headlines, 2023 was a busy year for health policy. The ever-rising cost of health care remained an issue plaguing patients and policymakers alike, while millions of Americans lost insurance coverage as states redetermined eligibility for their Medicaid programs in the wake of the public health emergency.

Meanwhile, women experiencing pregnancy complications continue to get caught up in the ongoing abortion debate, with both women and their doctors potentially facing prison time in some cases.

This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Sandhya Raman of CQ Roll Call, and Joanne Kenen of Johns Hopkins University and Politico Magazine.

Panelists

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories

Among the takeaways from this week’s episode:

• As the next election year fast approaches, the Biden administration is touting how much it has accomplished in health care. Whether the voting public is paying attention is a different story. Affordable Care Act enrollment has reached record levels due in part to expanded financial help available to pay premiums, and the administration is also pointing to its enforcement efforts to rein in high drug prices.
• The federal government is adding staff to go after “corporate greed” in health care, targeting in particular the fast-growing role of private equity. The complicated, opaque, and evolving nature of corporate ownership in the nation’s health system makes legislation and regulation a challenge. But increased interest and oversight could lead to a better understanding of the problems of and, eventually, remedies for a profit-focused system of health care.
• Concluding a year that saw many low-income Americans lose insurance coverage as states reviewed eligibility for everyone in the Medicaid program, there’s no shortage of access issues left to tackle. The Biden administration is urging states to take action to help millions of children regain coverage that was stripped from them.
• Also, many patients are all too familiar with the challenges of obtaining insurance approval for care. There is support in Congress to scrutinize and rein in the use of algorithms to deny care to Medicare Advantage patients based on broad comparisons rather than individual patient circumstances.
• And in abortion news, some conservative states are trying to block efforts to put abortion on the ballot next year — a tactic some used in the past against Medicaid expansion.
• This week in health misinformation is an ad from Florida’s All Family Pharmacy touting the benefits of ivermectin for treating covid-19. (Rigorous scientific studies have found that the antibacterial drug does not work against covid and should not be used for that purpose.)

Also this week, Rovner interviews KFF Health News’ Jordan Rau about his joint KFF Health News-New York Times series “Dying Broke.”

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

Julie Rovner: Business Insider’s “‘I Feel Conned Into Keeping This Baby,’” by Bethany Dawson, Louise Ridley, and Sarah Posner.

Joanne Kenen: The Trace’s “Chicago Shooting Survivors, in Their Own Words,” by Justin Agrelo.

Rachel Cohrs: ProPublica’s “Doctors With Histories of Big Malpractice Settlements Work for Insurers, Deciding if They’ll Pay for Care,” by Patrick Rucker, The Capitol Forum; and David Armstrong and Doris Burke, ProPublica.

Sandhya Raman: Roll Call’s “Mississippi Community Workers Battle Maternal Mortality Crisis,” by Lauren Clason.

Also mentioned in this week’s episode:

• Stat News’ “Humana Used Algorithm in ‘Fraudulent Scheme’ to Deny Care to Medicare Advantage Patients, Lawsuit Alleges,” by Casey Ross and Bob Herman.
• USA Today’s “Cigna Denied a Lung Transplant for a Cancer Patient. Insurer Now Says That Was an Eerror.’ By Ken Alltucker.
• Politico’s “Conservatives Move to Keep Abortion off the 2024 Ballot,” by Alice Miranda Ollstein and Megan Messerly.
• The New York Times’ “Why Democracy Hasn’t Settled the Abortion Question,” by Kate Zernike.

click to open the transcript

Transcript: 2023 Is a Wrap

KFF Health News’ ‘What the Health?’Episode Title: 2023 Is a WrapEpisode Number: 327Published: Dec. 21, 2023

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

Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Dec. 21, 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 Joanne Kenen of the Johns Hopkins University and Politico Magazine.

Joanne Kenen: Hi, everybody.

Rovner: Sandhya Raman of CQ Roll Call.

Sandhya Raman: Good morning.

Rovner: And Rachel Cohrs of Stat News.

Rachel Cohrs: Hi.

Rovner: Later in this episode, we’ll have my interview with KFF Health News’ Jordan Rau, co-author of a super scary series done with The New York Times about long-term care. It’s called “Dying Broke.” But first, this week’s news. I thought we would try something a little bit different this week. It just happened that most of this week’s news also illustrates themes that we’ve been following throughout the year. So we get a this-week update plus a little review of the last 12 months, since this is our last podcast of the year. I want to start with the theme of, “The Biden administration has gotten a ton of things done in health, but nobody seems to have noticed.”

We learned this week that, with a month still to go, Affordable Care Act plan sign-ups are already at historic highs, topping 15 million, thanks, at least in part, to extra premium subsidies that the administration helped get past this Congress and which Congress may or may not extend next year. The administration has also managed to score some wins in the battle against high drug prices, which is something that has eluded even previous Democratic administrations. Its latest effort is the unveiling of 48 prescription drugs officially on the naughty list — that’s my phrase, not theirs — for having raised their prices by more than inflation during the last quarter of this year, and whose manufacturers may now have to pay rebates. This is something in addition to the negotiations for the high-priced drugs, right, Rachel?

Cohrs: Yeah, this was just a routine announcement about the drugs that are expected to be charged rebates and drugmakers don’t have to pay immediately; I think they’re kind of pushing that a little further down the road, as to when they’ll actually invoice those rebates. But the announcement raised a question in my mind of — certainly they want to tout that they’re enforcing the law; that’s been a big theme of this year — but it brought up a question for me as to whether the law is working to deter price hikes if these companies are all doing it anyway, so just a thought.

Rovner: It is the first year.

Cohrs: It is. This started going into effect at the end of last year, so it’s been a little over a year, but this is assessed quarterly, so the list has grown as time has gone on. But just a thought. Certainly there’s time for things to play out differently, but that’s at least what we’ve seen so far.

Rovner: They could say, which they did this week, it’s like, Look, these are drugs because they raised the prices, they’re going to have to give back some of that money. At least in theory, they’re going to have to give back some of that money.

Cohrs: In Medicare.

Rovner: Right. In Medicare. Some of this is still in court though, right?

Cohrs: Yes. So I think at any moment, I think this has been a theme of this year and will be carrying into next year, that there are several lawsuits filed by drugmakers, by trade associations, that just have not been resolved yet, and I think some of the cases are close to being fully briefed. So we may see kind of initial court rulings as to whether the law as a whole is constitutional. It is worth noting that most of those lawsuits are solely challenging the negotiation piece of the law and not the inflation rebates, but this could fall apart at any moment. There could be a stay, and I expect that the first court ruling is not going to be the last. There’s going to be a long appeals process. Who knows how long it’s going to take, how high it will go, but I think there is just a lot of uncertainty around the law as a whole.

Rovner: So the administration gets to stand there and say, “We did something about drug prices,” and the drug companies get to stand there and say, “Not yet you didn’t.”

Cohrs: Exactly. Yes, and they can both be correct.

Rovner: That’s basically where we are.

Cohrs: Yes.

Rovner: That’s right. Well, meanwhile, in other news from this week and from this year, the Federal Trade Commission, the Department of Justice, and the Department of Health and Human Services are all adding staff to go after what Biden officials call “corporate greed” — that is their words — in health care. Apparently these new staffers are going to focus on private equity ownership of health care providers, something we have talked about a lot and so-called roll-ups, which we haven’t talked about as much. Somebody explain what a roll-up is please.

Kenen: Julie, why don’t you?

Rovner: OK. I guess I’m going to explain what a roll-up is. I finally learned what a roll-up is. When companies merge and they make a really big company, then the Federal Trade Commission gets to say, “Mmm, you may be too big, and that’s going to hurt trade.” What a roll-up is is when a big company goes and buys a bunch of little companies, so each one doesn’t make it too big, but together they become this enormous — either a hospital system or a nursing home system or something that, again, is not necessarily going to make free trade and price limits by trade happen. So this is something that we have been seeing all year. Can the government really do anything about this? This also feels like sort of a lot of, in theory, they can do these things and in practice it’s really hard.

Cohrs: I feel like what we’ve seen in this space — I think my colleague Brittany wrote about kind of this move — is that the corporate structures around these entities are so complicated. Is it going to discourage companies from doing anything by hiring a couple people? Probably not. But I think the people power behind understanding how these structures work can lay the groundwork for future steps on understanding the landscape, understanding the tactics, and what we see, at least on the congressional side, is that a lot of times Congress is working 10 years behind some of the tactics that these companies are using to build market power and influence prices. So I think the more people power, the better, in terms of understanding what the most current tactics are, but it doesn’t seem like this will have significant immediate difference on these practices.

Kenen: I think that the gap between where the government is and where the industry is is so enormous. I think the role of PE [private equity] in health care has grown so fast in a relatively short period of time. Was there a presence before? Yes, but it’s just really taken off. So I think that if those who advocate for greater oversight, if they could just get some transparency, that would be their win, at the moment. They cannot go in and stop private equity. They would like to get to the point where they could curb abuse or set parameters or however you want to phrase it, and different people would phrase it in different ways, but right now they don’t even really know what’s going on. So, even among the Democrats, there was a fight this year about whether to include transparency language between [the House committees on] Energy and Commerce and Ways and Means, and I don’t think that was ever resolved.

I think that’s part of the “Let’s do it in January” mess. But I think they just sort of want not only greater insight for the government, but also for the public: What is going on here and what are its implications? People who criticize private equity — the defenders can always find some examples of companies that are doing good things. They exist. We all know who the two or three companies we hear all the time are, but I think it’s a really enormous black box, and not only is it a black box, but it’s a black box that’s both growing and shifting, and getting into areas that we didn’t anticipate a few years ago, like ophthalmology. We’ve seen some of these studies this year about specialties that we didn’t think of as PE targets. So it’s a big catch-up for roll-up.

Rovner: Yeah, and I think it’s also another place that the administration — and I think the Trump administration tried to do this too. Republicans don’t love some of these things either. The public complains about high health care costs. They’re right; we have ridiculously high health care costs in this country, much higher than in other countries, and this is one of the reasons why, is that there are companies going in who are looking to simply do it to make a profit and they can go in and buy these things up and raise prices. That’s a lot of what we’re seeing and a lot of why people are so frustrated. I think at very least it at least shows them: It’s like, “See, this is what’s happening, and this is one of the reasons why you’re paying so much.”

Kenen: It’s also changing how providers and practitioners work, and how much autonomy they have and who they work for. It’s in an era when we have workforce shortages in some sectors and burnout and dissatisfaction. There are pockets at least, and again, we don’t really know how big, because we don’t have our arms around this, but there are pockets; at least we do know where the PE ownership and how they dictate practice is worsening these issues of burnout and dissatisfaction. I’m having dinner tomorrow night with a expert on health care antitrust, so if we were doing this next week, I would be so much smarter.

Rovner: We will be sure to call on you in January. Workforce burnout: This is another theme that we’ve talked about a lot this year.

Kenen: It’s getting into places you just wouldn’t think. I was talking to a physical therapist the other day and her firm has been bought up, and it’s changing the way she practices and her ability to make decisions and how often she’s allowed to see a patient.

Rovner: Yeah. Well, another continuing theme. Well, yet another big issue this year has been the so-called Medicaid unwinding, as states redetermine eligibility for the first time since the pandemic began. All year, we’ve been hearing stories about people who are still eligible being dropped from the rolls, either mistakenly or because they failed to file paperwork they may never have received. Among the more common mistakes that states are making is cutting off children’s coverage because their parents are no longer eligible, even though children are eligible for coverage up to much higher family incomes than their parents. So even if the parents aren’t eligible anymore, the children most likely are.

This week, the federal government reached out to the nine states that have the highest rates of discontinuing children’s coverage, including some pretty big states, like Texas and Florida, urging them to use shortcuts that could get those children’s insurance back. But this has been a push-and-pull effort all year between the states and the federal government, with the feds trying not to push too hard. At one point, they wouldn’t even tell us which states they were sort of chiding for taking too many people off too fast. And it feels like some of the states don’t really want to have all these people on Medicaid and they would just as soon drop them even if they might be eligible. Is that kind of where we are?

Raman: You can kind of look to see the tea leaves at what some of these states are. The states that the health secretary wrote to, that have 60% of the decline in the kids being disenrolled, align pretty well with the states that have not expanded Medicaid. So they’re already going to have much fewer people enrolled than states where the eligibility levels are a lot more generous. So it’s not surprising, and some of these states have been just a little bit more aggressive from the get-go or said that they wanted to do the eligibility redeterminations a lot faster than some of the other states that wanted to take the longer time, reevaluate different ways to see if someone was still eligible, whether they were maybe getting SNAP [Supplemental Nutrition Assistance Program] benefits or other things like that. So it’s not surprising.

Rovner: You mean do it more carefully.

Raman: Yeah, yeah, so I think that the letter is one step, but if those states are really going to take up implementing these other strategies to kind of decrease that drop-off, unclear, just because they have been pretty proactive about doing this in a quick process.

Rovner: I also noticed that the states that the HHS secretary wrote to kind of tracked with the states that didn’t expand Medicaid under the Affordable Care Act, but interestingly, that meant that there would’ve been fewer parents who were eligible in the first place. So there shouldn’t have been as many children cut off, because there weren’t as many parents who ever got onto Medicaid in those states, which is why it made me raise my eyebrows a little bit. Again, I think this is something that we shall continue to follow going into next year.

Kenen: But we should also point out that even the more pro-Medicaid, liberal states have not done a great job with unwinding. It’s been bumpy pretty much across the board. It’s been very problematic. It’s a clumsy process in a normal year, and trying to catch up on three years’ worth — this is a population where people’s income varies a lot. Are you just over the line? Are you just under the line? It’s fluctuating, the eligibility changes. But you try to do three years at once after all the chaos, with political undercurrents such as the nonexpansion states, and it makes it harder and messier.

Rovner: Which was predicted and came true. So yet another theme from this year is what I’m calling the managed care backlash redux. In the late 1990s, when lots of people were herded into managed care for the first time, there were lots of horror stories about patients being denied care, doctors being put through bureaucratic hoops, unqualified people making medical decisions. There’s a bipartisan bill that almost came to fruition in 2001 for what was called a patient’s bill of rights, but it was pushed off the agenda by 9/11. Most of the protections in that bill, however, were eventually included in the Affordable Care Act.

So now it’s 2023, and lo and behold, those same issues are back. A top issue for the American Medical Association this year is reining in prior authorization requirements, which require doctors to actually get permission before their patients can get recommended care. In one particularly painful story recently, a woman who’d been approved for a lung transplant had her surgery canceled by her insurer, literally on the way to the OR [operating room]. Later, and not coincidentally after a public outcry, the insurer, Cigna, called the whole thing, quote, “An error.” So she did finally get her lung transplant. Joanne, you covered the patient’s bill of rights fight with me back in the day. Most things that are being complained about now are now illegal. So why are we seeing so much of it again?

Kenen: Because there’s confusion about — patients don’t know what their rights are. All of us are savvy and all of us have had something in our own insurance that we don’t understand, or maybe we end up navigating it, but it’s not ever easy. Things like prior authorization — they say, “Well, we have to make sure people are getting appropriate care.” There is an element of truth there; there is overuse in American health care. There are people who get things they don’t really need or should try something less intrusive and less expensive first. So you have this genuine issue of overtreatment, back surgery being the classic example. Many people will do just as well with physical therapy and things like that than they will with an $80,000 operation. In fact, they might do better with the PT and not with the $80,000 operation.

So is there any validity to the idea of making sure people get appropriate care? Yes, but they say no to stuff that they should be covering. That’s clear, and that patients don’t always know what the right pathway is, because doctors also have incentives, or just the way they’re trained and the way they look at their — surgeons like to cut. It’s what they’re trained to do. They trained for years. So it’s really complicated, because there’s this collision between overuse and overtreatment and overcharging and all the over, over, over stuff that comes from the provider world and the no, no, no, no, no, no, no, “you can’t have that” stuff that comes from the insurer world, sometimes appropriately, but often not appropriately.

Rovner: Then I guess you load onto that the private equity and now the providers whose overlords are in it to make a profit. Then you have sort of private equity butting heads with insurance, which is one of the reasons I think we are sort of ending up here. But it certainly does feel very reminiscent of things that I’ve been through before. We’re seeing yet a similar story with Medicare Advantage, which is the private Medicare managed care program that now enrolls more than half of the Medicare population and makes lots of money for its private insurance companies that offer them.

Rachel, your colleagues wrote about a Humana algorithm that was being used to deny care after a patient had received it for, quote-unquote, “an average period of time, regardless of the patient’s condition,” meaning that if patient is sicker than average, they were saying, “Too bad, we’re only going to give this to you for 18 days because that’s what the average patient needs. If you need more, sorry about that.” So Congress is now trying to get into the act, trying to ensure that Medicare patients, who tend to vote in disproportionate numbers, get their needed care. The insurance industry is pushing back against the pushback. What’s the outlook for Congress actually getting something done on this issue? I’ve heard a lot of talk. I haven’t seen a whole lot of action.

Cohrs: Yeah, I mean certainly there has been talk — and just to point out that the Humana lawsuit is related to the UnitedHealth Group lawsuit that we saw earlier; it’s the same company making the algorithm. Bob and Casey’s reporting was just more focused on UnitedHealth Group, because they got internal documents showing the correlation between the quote-unquote “recommendation” of this algorithm and care decisions and denials and people being cut off from their rehab services. So I think certainly, I think there has been a lot of outcry. We’re seeing this play out in the legal system beforehand. This is an issue that we’ve discussed as well.

Are we going to regulate through the courts, because everything else is too slow? I think AI is certainly a hot topic on the Hill at the moment, and there is lawmaker interest, but this is just a very complicated space. Lawmakers, though they might try their best, are not the most tech-savvy people. These are very powerful interests that I would imagine would oppose some of these regulations if they were to actually materialize. So, there’s nothing imminent. Certainly if we see these lawsuits keep piling up, if we see discovery, if we see some more examples of this happening where other companies are using the algorithms as well, a groundswell — as you mentioned, Medicare patients are an important constituency — I think we could see some action, but it’s not looking imminent at this time.

Kenen: The other thing is there’s been a number of reports from a number of media outlets, Stat and others, that these algorithms are being used without any people to work with them. Like, OK, here’s this algorithm and it’s doing these batches of like, I’m going to say no to 50,000 people in 20 seconds. I’m exaggerating a little bit there, but yes, is there legitimate questions about what is appropriate treatment? Yes.

Or you hear these stories about people told, “You can’t have this drug; you have to have that drug at first,” but they would try that drug and it didn’t work for them, and there’s just no way of — the reason we have five or six similar drugs is that in some cases, those slight differences, people respond differently, mental health being a huge example of that, right? Where it could be very hard to get people on the right drugs, if person A doesn’t respond the same way as person B, even if they have the same condition. But 50,000, I don’t know if that’s the right number, but I think I remember reading one where it was 50,000 going through an algorithm. That’s not appropriate use; that’s mass production of saying no to some legitimate needs.

Rovner: Sandhya, I see you nodding there. I know that this is something that’s kind of bipartisan, right? Members of Congress get complaints about Medicare, which is something that they do, members of Congress, oversee. It is a government program, even though these are being run by private companies. I’m sort of wondering when this is going to reach a boiling point that’s going to require something to be done.

Raman: I think with some of these issues that we face that are kind of evergreen here, there has been a bipartisan push to find kind of ways to reform the prior authorization process. We’ve had people as different as Sen. Elizabeth Warren (D-Mass.) and Sen. Mike Crapo (R-Idaho) say they want reform, or Sen. James Lankford (R-Okla.) is very different from Rep. Pramila Jayapal (D-Wash.), and they’ve both said that, similar things that …

Rovner: Some of the most conservative and the most liberal members of Congress.

Raman: Yeah, so we’ve got a broad stretch, but I think at the same time, if you look at some of the other things that we have to deal with here — Congress is out for the year, but for next year, we are fairly behind in that we have a long list of things that need to be extended by mid-January. Then we have just funding all of HHS and a number of other government things by early February. So getting something from start to finish next year, which is also an election year, is going to be tough. So I think that there’s interest there, but I don’t know that getting something hashed out is going to be the easiest next year of all years.

Rovner: Yeah, I think it’s fair to say that Congress took an incomplete in most subjects this year. Well, finally this week, the topic that I think has been in every podcast this year, which is abortion. One of the threads that has wound through this year’s coverage is the strong support for abortion rights from voters, even in red and red-ish states. This year, Ohio voters affirmed a right to abortion, twice actually; there was a technical vote back in the summer. And in Virginia, Democrats flipped the legislature by running against Republican promises to impose a compromise 15-week ban, which apparently did not seem to be a compromise to most of the voters. That was after a half a dozen states voted in favor of the abortion rights position in the 2022 midterms. So this week we have a pair of stories, one from Politico and one from The New York Times, about how anti-abortion forces are working to keep future abortion-related questions off of the ballot in states where there’s still that possibility, including Florida, Missouri, Arizona, and Nevada.

One Republican Missouri lawmaker said that the right to life, quote, “should not be taken away because of a vote by a simple majority,” which frankly felt a little breathtaking to me. He has filed a bill that would require ballot measures to pass not just statewide, but with a majority in more than half of the state’s congressional districts. So basically in the really red parts of the states, a majority there would also have to vote for this. These people are getting very creative in their attempts to stop these votes from happening, maybe because they don’t think they can win them if it’s just straight up or down.

Raman: I think one thing to look at is kind of how we see some of these similar tactics in the same way that we saw with Medicaid. When Medicaid expansion started winning on different ballots, there were states that tried to put in measures to kind of tamp that down, saying, “You need a higher threshold,” and maybe that doesn’t pass, but still putting in different tactics to reduce the likelihood of that passing. I think that’s kind of what we’ve been seeing here, whether or not it’s Ohio trying to change its threshold, or we’ve had states say that even if something passed, let’s try to tear that back so that it doesn’t actually get implemented, or ahead of the ones for next year, let us find tactics to reduce the likelihood they’ll get the signatures to be on the ballot or reduce the likelihood of it passing by changing the language or pushing for challenging the language.

So there’s kind of what we saw right after the Dobbs decision, which was just a very “throw spaghetti at the wall, see what sticks,” just kind of ramp up things and see what will work, given that the last — all of the elections that we’ve had post-Dobbs have been in the favor of abortion rights. Even when we’ve tried to pass an anti-abortion measure, it’s not passed at the ballot. In the stories that you mentioned, there was another quote that stuck out to me, where they’d also mentioned that maybe this should not be subject to majority vote, I think in the Politico piece as well. So I think that’s something that is interesting that I haven’t really seen vocalized before, that this should be done in a different manner rather than this is how the majority of people feel one way or the other.

Rovner: Yeah, it felt so ironic because when in the Dobbs decision, Justice [Samuel] Alito wrote, “Well, now we’re turning this back to the states to be decided by their voters.” Well, here are their voters deciding, and it turns out the anti-abortion side don’t like the way the voters are voting, so they’re going to try to not have the voters vote, basically. We will see how this one all plays out. The other continuing story this year is women being prosecuted basically for bad pregnancy outcomes. Last week we talked about the case of Brittany Watts, an Ohio woman who was sent home from a hospital emergency room twice, had a miscarriage, and this week had formal charges filed against her for, quote, “abusing a corpse.” This case hasn’t gotten nearly the attention of the case of Kate Cox, the Texas woman whose fetus was diagnosed with fatal defects and who filed suit to be allowed to have an abortion.

She eventually had to go to another state, and that was even before the permission that had been granted by a lower-court judge was overturned by the Texas Supreme Court. It may be at least in part because Brittany Watts is black, or that she didn’t put herself out in public the way Kate Cox did, but this is a way that prosecutors can punish women even in states where abortion remains legal. Remember Ohio voted twice this year to keep abortion legal, and this wasn’t even an abortion; it was a miscarriage. The medical examiner determined that the fetus was already dead when it passed. What are the prosecutors trying to do here? We talk about chilling effects. This is kind of the ultimate chilling effect, right?

Raman: It really is, because here we have someone that was not, as you said, seeking an abortion. She miscarried, and I think that she was 21 weeks and five days pregnant, and then they had the 21-week cutoff. So it gets sent into really murky waters here because I’m not sure what they’re going for, kind of picking this case to prosecute and go with. We’ve had this happen before where people have self-managed or miscarried, and then they’ve ended up being prosecuted. But at this point, I’m not sure why they’re making a case out of this particular woman, kind of dragging this into the debate.

Rovner: Yeah, there was a famous case in Indiana — 2013, may have been even before that — a pregnant woman who tried to kill herself and failed to kill herself, but did kill her fetus, and she was put in jail for several years. There have been, at least there was sort of the question there, were you trying to self-abort at that point? But there was nothing here. This was a woman with a wanted pregnancy whose pregnancy ended via natural circumstances, which happens, I think we’ve discovered now, a lot more than people realize.

I think people don’t talk about unhappy pregnancy outcomes, so people don’t realize how common they actually are. But I wonder — and I’ve been saying this all year — again, if women are fearing prosecution, even women who want babies, they may fear getting pregnant. I’ve seen some stories about more permanent types of birth control happening because women don’t want to get pregnant, because they don’t want to end up in a place where their health is being risked or they’re trying to get health care they need and their doctor or they could be facing prison time.

Kenen: And in this case, she had gone to the hospital. It’s complicated. She went in and out of the hospital. She went to the ER; they sent her home. I think then once they sent her home another time, she left against medical advice, but she wasn’t trying to get an abortion. She was having pregnancy complications. It’s documented. She was in and out of medical care. Pregnancies can fail, and early, the first trimester, it’s a very high rate. It’s less common later on, but it still happens. There are times when an early miscarriage, you might not even know that it’s a miscarriage. It’s early. You don’t know what’s even going on with your own body, or you’re not certain. So she didn’t know what to do at home when she did miscarry. It seems very punitive. Did she behave in an absolutely ideal, textbook-perfect, the way you wish she might have? But she did what she could do at the time.

Rovner: Yeah, it’s hard to know what to do. Well, we will watch this case, I think, even though it’s not, as I say, it’s not getting quite the attention of some of the other cases. Our final this week in health information of 2023 goes to an ad that came to my email from the All Family Pharmacy in Boca Raton, Florida. The headline is “Miracle Drug Ivermectin for Covid-19 Could Save Lives,” and it claims that, quote, “a growing body of evidence from dozens of studies worldwide demonstrates ivermectin’s unique and highly potent ability to inhibit SARS-CoV-2 replication and aid in the recovery from covid-19.”

That sounded not quite right to me, so I looked up some of the studies that they cited and found that most had been thoroughly debunked, that ivermectin is not really good treatment for covid-19. I even found one study from an open-access journal that had to publish a correction, noting that two of its authors were paid consultants to ivermectin manufacturers, though they had failed to disclose that conflict. Meanwhile, if you don’t want ivermectin or hydroxychloroquine, which the All Family Pharmacy also sells, they will also sell you semaglutide, which is the scientific name of the hard-to-get weight loss drug Ozempic. And they say their price even includes a doctor consult. I will post the links in the show notes. All right, that is this week’s news. Now we will play my interview with Jordan Rau about his long-term care financing series. Then we’ll come back with our extra credits.

I am pleased to welcome to the podcast my KFF Health News colleague Jordan Rau. I asked Jordan to join us to talk about his latest project, “Dying Broke,” done in partnership with The New York Times. It’s about the growing expense of long-term care and the declining ability of Americans to pay for it. Jordan, welcome to “What the Health?”

Jordan Rau: Glad to be here, Julie.

Rovner: So I want you to start with the 30-second elevator pitch about what you found working on this, for two years?

Rau: Just about. The big-picture view is that when you’re elderly, if you need long-term care, by which we’re talking about nonmedical things, like personal aides, if you need help in your daily activities going to the bathroom or eating or such, or if you have a cognitive impairment like dementia, it’s exceedingly expensive, except if you are destitute. The private market solutions, which are long-term care insurance, really don’t work, and most people don’t hold it. The government solution, which is Medicaid, is only available to you once you’ve exhausted just about all of your assets and have very low income. And that’s led the vast majority of people out on their own financially to either rely on themselves or their family or other people to take up the burden. And that burden is significant for the children of older people.

Rovner: So it’s not just nursing home care that costs more than all but the richest can afford; assisted living and home care, which people assume are going to be a lot cheaper and that maybe their retirement savings will cover — they’re also increasingly out of reach. Why has the price of long-term care gone up so much faster than Americans’ retirement savings?

Rau: All of medical inflation has gone up enormously, but I think a lot of it is that there’s so little regulation on prices. There’s frankly no regulation on prices of assisted living, and you don’t have a large payer that can control prices. That’s one of the good things about Medicare, is that they set their own prices and that’s helped keep prices down. That’s why it’s less expensive for Medicare to send someone to a nursing home than for someone to pay out-of-pocket. But there’s none of that. So the prices have just gone where they’ve gone, and now you have a scarcity of workers as well. So that’s driving up wages.

Rovner: People who’ve been socking away money and thinking they’re going to be able to pay for this themselves get kind of a rude awakening when they need, and it’s not — as you say, it’s not even medical long-term care; it’s just help with activities of daily living.

Rau: Yeah, yeah, yeah. I think one of the problems is that people assume they have the best-case scenario when they’re envisioning their retirement. They’re going to be off golfing, they’re going to be playing around with their grandkids, they’re going to be taking trips. The fact is, you’re very likely — if you live well into your 80s and 90s, as many people do — to not be able to live independently anymore, to need help with at least a little bit of things, and in worst-case scenario everything. People just don’t expect that that’s going to happen.

Rovner: So why do so many Americans still not know that Medicare doesn’t pay for long-term care? I feel like I’ve been saying this since 1980-something.

Rau: I wonder how much of it would’ve been different if they had decided to name Medicaid something that isn’t so close to Medicare. Maybe that would’ve helped, but realistically, everyone I think has a sense. Well, first of all, who’s paying attention to this stuff when you’re in your 30s and 40s, right? You’re not thinking about what’s going to happen to you in the 60s. And then I think that people just don’t expect that this is going to happen to them, and Medicare has a well-earned reputation as being pretty comprehensive. It doesn’t cover certain things, and there is a “donut hole” situation, so you’ve got to get supplemental. But people know that for the most part, it’s covered. And people don’t understand that long-term care, the nonmedical side, is — not just here, everywhere — it’s the backwater of health care. It’s not even considered health care in some ways.

So you just assume — I mean, I would assume, right, if Medicare is going to cover my heart transplant, why would I not think that it’s going to cover someone to come to my house a couple hours a day to help me with stuff or to put me in an assisted living facility if it covers nursing home care? It’s such a complicated, Byzantine system. You and I, we’ve been doing this probably combined, well, I don’t want to say how long, but it’s been a long time, and it’s hard for us to untangle exactly what is covered and what overlaps with what and what are the eligibility rules. So to expect a regular person, who isn’t paid to do this 50 hours a week, to know it is highly unrealistic.

Rovner: Yeah, and I was going to say the fact that Medicare actually has a home care benefit and it has a nursing home benefit; they’re just super limited. I think that sort of adds to the confusion too, doesn’t it?

Rau: Yeah. Well, even Medicare is confused about its home care benefit, right? There’s the whole Jimmo case and a whole debate about what you need to qualify for it.

Rovner: So listeners will know that long-term care and our country’s complete lack of a long-term care policy is a pet issue of mine and has been since I started writing about it in 1986. It isn’t like the government hasn’t tried to do something. There was the ill-fated Medicare Catastrophic Coverage Act in 1988 that ended up getting repealed. There were efforts to subsidize private long-term care insurance in the 1990s that didn’t really go anywhere, and there was the CLASS [Community Living Assistance Services and Supports] Act that was briefly part of the Affordable Care Act when it passed in 2010, only to be abandoned as financially unfeasible. Why has this been such a hard issue to address from a policy point of view?

Rau: The one-word answer obviously is money. It’s incredibly expensive. So to have that type of lift, it would be to expand either Medicaid or Medicare or to create a new program; would be inordinately expensive. But beyond that, I think basically, to do this, you either have to tag on something to one of those existing programs, which is a major expansion, or you have to have a mandatory insurance program. It could be a public one; it can be a private one. I think that it’s hard because it’s not universal. Auto insurance — everybody drives, right? So if you say, OK, you all know you’re going to drive, and people know like, Oh, I may get into an accident. So then you have a functioning insurance market.

Health insurance, sort of the same thing. Everyone knows that they’re going to need health insurance maybe next year. So that’s an easier sell. Even that, right, with the Affordable Care Act — that passed by just one vote. That was a heavy lift. So here you’re saying, here’s something that you may need but you very well may never tap. By the way, we want you to pay for it now or buy into it now, and it’s not relevant for your life until 30 years. I just think that’s a hard sell politically to the population, to the political system. It’s a hard sell.

Rovner: So if there was just one message that you hope people take away after reading this exhaustive series, what do you think it should be?

Rau: Printing the series out and frame it and put it on your wall would be my main message. But I would say that this stuff is so unpredictable that you really have to have some flexibility in your expectations and planning, because you can’t plan to not get early-onset dementia. You can’t plan to need help. So I think that you need to — people obviously need to have as much of a cash cushion as they can, and they need to bone up on this before it’s a crisis, because by the time it’s a crisis — and this is a problem, right, with health insurance too. By the time you’ve got the emotional and health issues, to throw on top of it a bureaucratic sort of financial issue is just so hard for most people to juggle. So there isn’t an easy solution, but it is important for people to realize that this is as much of a risk as smashing your car into a telephone pole and that you cannot have one answer.

Your answer cannot be like, “Oh, well I’m just going to stay in my house, because you may not be able to stay in your house.” Or your answer can’t be, “Well, I’m going to go into a fancy assisted living facility with a great chandelier and great food,” because unless you save an inordinate amount of money, even if you go in there, you may not be able to afford to stay there. So it’s really a recognition that you can’t really concretely plan for this, but you may very well not be able to live independently if you are lucky enough to live into your eighth and ninth decade.

Rovner: Great. Jordan Rau, anything I didn’t ask?

Rau: Never. Never, Julie.

Rovner: Jordan Rau, thank you so much for joining us.

Rau: Great to see you.

Rovner: OK. We are back, and it’s time for our last extra credit segment of the year. 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. Rachel, why don’t you go first this week?

Cohrs: Sure. The story I chose is in ProPublica. The headline is “Doctors With Histories of Big Malpractice Settlements Work for Insurers, Deciding If They’ll Pay for Care,” by Patrick Rucker at The Capitol Forum and David Armstrong and Doris Burke at ProPublica. I think this article very much fits into the larger theme we were talking about earlier about insurance denials. This was pretty shocking still to me, of these instances of doctors with big malpractice settlements that had been disciplined by medical boards failing up essentially and getting jobs. If they can’t practice anymore, then they’re getting jobs in insurance companies instead, deciding whether a much larger volume of patients get care. So I think it was just a fascinating, really well-done investigation. It sounded like it was really difficult to match up all the records with the lawsuits and the settlements, and there aren’t necessarily databases that exist of what doctors work for insurance companies. So it was just really well done and just a really important space that we’ll continue to talk about.

Kenen: That was a great piece. These doctors are making $300,000 to $400,000 a year, these people who failed up, as Rachel just put it. Yeah.

Rovner: Yeah. That’s the perfect phrase. Sandhya.

Raman: My extra credit this week is called “Mississippi Community Workers Battle Maternal Mortality Crisis,” and it’s from my colleague at Roll Call Lauren Clason. This story also illustrates a combination of themes from this year. It touches on some of the maternal health inequities, the racial inequities, and rural health inequities, and how politics kind of comes into all of that. Mississippi Black women die at a rate four times higher than white women, and the state also leads in infant mortality rates nationwide. At the same time, it’s also a nonexpansion state for Medicaid. So Lauren went to Mississippi to look at some of the community and state-led groups that are trying to reduce these inequities that are caused by the different racial, socioeconomic, and access factors that are happening at the same time that an increasing number of hospitals are closing in the state.

Rovner: Also another really good story. Joanne?

Kenen: The theme of the day is yearlong, or decades-long in some cases, but ongoing health stories that have dominated the year. Another one that we didn’t touch on today but clearly is an ongoing multiyear health crisis is gun violence, which is a public health problem as well as a criminal justice problem. The Trace did a fantastic end-of-year project by Justin Agrelo. It’s called “Chicago Shooting Survivors, in Their Own Words.” They worked with both people who had survived shootings as well as people who had lost family members to shootings, and they worked with them about how to write and tell stories.

These five stories are in these people’s own words, and it was partnered with a bunch of other Chicago-based publications. They’re very powerful. In the introduction, they wrote that the Chicago media has been really good about trying to cover every homicide but that these people end up being defined by their death, not everything else about their life. These essays, they didn’t just talk about grief, which is obviously a huge — grief and trauma — but also the lives, not just the deaths. It’s really, really worth spending some time with.

Rovner: Yeah, and we haven’t talked as much as we probably should have about gun violence, but we will put that on the list for 2024. My extra credit this week is from Business Insider. It’s called “I Feel Conned Into Keeping This Baby.” It’s by Bethany Dawson, Louise Ridley, and Sarah Posner. It’s about an anti-abortion group that promised pregnant women financial support for their babies if they agreed not to get an abortion. But even though the women signed contracts, the group, called Let Them Live, did not provide the aid promised. Apparently they promised more money than they could raise in contributions. Now, I have heard of pregnancy crisis centers promising things like diapers and formula, but this group said it would help with groceries and rent and other significant expenses until it didn’t. Apparently the small print in the contract said the benefits could be reduced or stopped at any time. This was supposed to help answer the criticism that anti-abortion groups don’t actually care about the women, particularly after they give birth, except maybe promising things that you can’t deliver isn’t the best way to do that.

OK. That is our show for this week and for this year. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can still find me at X, @jrovner, or @julierovner at Bluesky and @julie.rovner at Threads. Sandhya, where are you on social media these days?

Raman: I’m @SandhyaWrites on both X and Bluesky.

Rovner: Rachel.

Cohrs: I’m @rachelcohrs on X, @rachelcohrsreporter on Threads.

Rovner: Joanne.

Kenen: @joannekenen1 on Threads. I’m occasionally on X — or, as you all know, I’ve been calling it Y — @JoanneKenen.

Rovner: We will be back in your feed in 2024. Until then, have a great holiday season, and be healthy.

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This story can be republished for free (details).

SAN DIEGO — Erinn Maury knew Remicade wasn’t the right drug for Patti Schulte, a rheumatoid arthritis patient the physician saw at her Millersville, Maryland, practice. Schulte’s swollen, painful joints hadn’t responded to Enbrel or Humira, two drugs in the same class.

But the insurer insisted, so Schulte went on Remicade. It didn’t work either.

What’s more, Schulte suffered a severe allergic reaction to the infusion therapy, requiring a heavy dose of prednisone, a steroid with grave side effects if used at high doses for too long.

After 18 months, her insurer finally approved Maury’s drug of choice, Orencia. By then, Schulte’s vertebrae, weakened by prednisone, had started cracking. She was only 60.

Schulte’s story of pain, drug-hopping, and insurance meddling is all too common among patients with rheumatoid arthritis, who often cycle agonizingly through half a dozen drugs in search of one that provides a measure of relief. It’s also a story of how doctors are steered by pharmacy benefit managers — the middlemen of the drug market — as well as by insurers.

Once people with inflammatory conditions such as rheumatoid arthritis reach a certain stage, the first prescription offered is typically Humira, the best-selling drug in history, and part of a class known as tumor necrosis factor inhibitors, or TNFis, which fail to significantly help about half of the patients who take it.

“We practice rheumatology without any help,” said Vibeke Strand, a rheumatologist and adjunct clinical professor at Stanford. She bemoaned the lack of tools available to choose the right drug while bristling at corporate intervention in the decision. “We are told by the insurer what to prescribe to the patient. After they fail methotrexate, it’s a TNF inhibitor, almost always Humira. And that’s not OK.”

If there’s a shred of hope in this story, it’s that a blood test, PrismRA, may herald an era of improved care for patients with rheumatoid arthritis and other autoimmune conditions. But first, it must be embraced by insurers.

PrismRA employs a predictive model that combines clinical factors, blood tests, and 19 gene patterns to identify the roughly 60% of patients who are very unlikely to respond to a TNFi drug.

Over the past 25 years, drug companies have introduced five new classes of autoimmune drugs. TNFis were the first to market, starting in the late 1990s.

Some 1.3 million Americans have rheumatoid arthritis, a disease in which a person’s immune system attacks their joints, causing crippling pain and, if improperly treated, disfigurement. The newer drugs, mostly so-called biologics, are also used by some of the 25 million or more Americans with other autoimmune diseases, such as lupus, Crohn’s disease, and psoriasis. Typically costing tens of thousands of dollars annually, the drugs are prescribed after a patient fails to respond to older, cheaper drugs like methotrexate.

Until recently, rheumatologists have had few ways to predict which of the new drugs would work best on which patients. Often, “it’s a coin flip whether I prescribe drug A or B,” said Jeffrey Curtis, a rheumatology professor at the University of Alabama-Birmingham.

Yet about 90% of the patients who are given one of these advanced drugs start on a TNFi, although there’s often no reason to think a TNFi will work better than another type.

Under these puzzling circumstances, it’s often the insurer rather than the doctor who chooses the patient’s drug. Insurers lean toward TNFis such as adalimumab, commonly sold as brand-name Humira, in part because they get large rebates from manufacturers for using them. Although the size of such payments is a trade secret, AbbVie is said to be offering rebates to insurers of up to 60% of Humira’s price. That has enabled it to control 98.5% of the U.S. adalimumab market, even though it has eight biosimilar competitors.

PrismRA’s developer, Scipher Medicine, has provided more than 26,000 test results, rarely covered by insurance. But on Oct. 15, the Centers for Medicare & Medicaid began reimbursing for the test, and its use is expected to rise. At least two other companies are developing drug-matching tests for rheumatoid arthritis patients.

Although critics say PrismRA is not always useful, it is likely to be the first in a series of diagnostics anticipated over the next decade that could reduce the time that autoimmune disease patients suffer on the wrong drug.

Academics, small biotechs, and large pharmaceutical companies are investing in methods to distinguish the biological pathways involved in these diseases, and the best way to treat each one. This approach, called precision medicine, has existed for years in cancer medicine, in which it’s routine to test the genetics of patients’ tumors to determine the appropriate drug treatment.

“You wouldn’t give Herceptin to a breast cancer patient without knowing whether her tumor was HER2-positive,” said Costantino Pitzalis, a rheumatology professor at the William Harvey Research Institute in London. He was speaking before a well-attended session at an American College of Rheumatology conference in San Diego in November. “Why do we not use biopsies or seek molecular markers in rheumatoid arthritis?”

It’s not only patients and doctors who have a stake in which drugs work best for a given person.

When Remicade failed and Schulte waited for the insurer to approve Orencia, she insisted on keeping her job as an accountant. But as her prednisone-related spinal problems worsened, Schulte was forced to retire, go on Medicaid, and seek disability, something she had always sworn to avoid.

Now taxpayers, rather than the insurer, are covering Schulte’s medical bills, Maury noted.

Precision medicine hasn’t seemed like a priority for large makers of autoimmune drugs, which presumably have some knowledge of which patients are most likely to benefit from their drugs, since they have tested and sold millions of doses over the years. By offering rebate incentives to insurers, companies like AbbVie, which makes Humira, can guarantee theirs are the drugs of choice with insurers.

“If you were AbbVie,” Curtis said, “why would you ever want to publish data showing who’s not going to do well on your drug, if, in the absence of the test, everyone will start with your drug first?”

What Testing Could Do

Medicare and commercial insurers haven’t yet set a price for PrismRA, but it could save insurers thousands of dollars a year for each patient it helps, according to Krishna Patel, Scipher’s associate director of medical affairs.

“If the test cost $750, I still only need it once, and it costs less than a month of whatever drug is not going to work very well for you,” said Curtis, a co-author of some studies of the test. “The economics of a biomarker that’s anything but worthless is pretty favorable because our biologics and targeted drugs are so expensive.”

Patients are enthusiastic about the test because so many have had to take TNFis that didn’t work. Many insurers require patients to try a second TNFi, and sometimes a third.

Jen Weaver, a patient advocate and mother of three, got little benefit from hydroxychloroquine, sulfasalazine, methotrexate, and Orencia, a non-TNFi biologic therapy, before finding some relief in another, Actemra. But she was taken off that drug when her white blood cells plunged, and the next three drugs she tried — all TNFis — caused allergic reactions, culminating with an outbreak of pus-filled sores. Another drug, Otezla, eventually seemed to help heal the sores, and she’s been stable on it since in combination with methotrexate, Weaver said.

“What is needed is to substantially shorten this trial-and-error period for patients,” said Shilpa Venkatachalam, herself a patient and the director of research operations at the Global Healthy Living Foundation. “There’s a lot of anxiety and frustration, weeks in pain wondering whether a drug is going to work for you and what to do if it doesn’t.” A survey by her group found that 91% of patients worried their medications would stop working. And there is evidence that the longer it takes to resolve arthritis symptoms, the less chance they will ever stop.

How insurers will respond to the availability of tests isn’t clear, partly because the arrival of new biosimilar drugs — essentially generic versions — are making TNFis cheaper for insurance plans. While Humira still dominates, AbbVie has increased rebates to insurers, in effect lowering its cost. Lower prices make the PrismRA test less appealing to insurers, since widespread use of the test could cut TNFi prescriptions by up to a third.

However, rheumatologist John Boone in Louisville, Kentucky, found to his surprise that insurers mostly accepted alternative prescriptions for 41 patients whom the test showed unlikely to respond to TNFis as part of a clinical trial. Boone receives consulting fees from Scipher.

Although the test didn’t guarantee good outcomes, he said, the few patients given TNFis despite the test results almost all did poorly on that regimen.

Scientists from AbbVie, which makes several rheumatology drugs in addition to Humira, presented a study at the San Diego conference examining biomarkers that might show which patients would respond to Rinvoq, a new immune-suppressing drug in a class known as the JAK inhibitors. When asked about its use of precision medicine, AbbVie declined to comment.

Over two decades, Humira has been a blockbuster drug for AbbVie. The company sold more than $3.5 billion worth of Humira in the third quarter of 2023, 36% less than a year ago. Sales of Rinvoq, which AbbVie is marketing as a treatment for patients failed by Humira and its class, jumped 60% to $1.1 billion.

What Patients Want

Shannan O’Hara-Levi, a 38-year-old in Monroe, New York, has been on scores of drugs and supplements since being diagnosed with juvenile arthritis at age 3. She’s been nauseated, fatigued, and short of breath and has suffered allergic reactions, but she says the worst part of it was finding a drug that worked and then losing access because of insurance. This happened shortly after she gave birth to a daughter in 2022, and then endured intense joint pain.

“If I could take a blood test that tells me not to waste months or years of my life — absolutely,” she said. “If I could have started my current drug last fall and saved many months of not being able to engage with my baby on the floor — absolutely.”

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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The House voted Dec. 11, 320-71, for legislation that would require the PBMs to change some of the ways they do business. The big three — CVS Health, Express Scripts, and OptumRx — have all announced their own reform measures in recent months. 

The bill looks unlikely to pass the Senate, though some of its provisions might eventually become law. Meanwhile, some of the most baffling contradictions of PBM drug pricing are coming to a head. 

Take AbbVie’s Humira, the highest-earning drug ever. Eight biosimilars — what ordinary people would call generics — came onto the market this year, raising hopes of big savings for patients and insurers. Some cost as little as $995 a month, compared to Humira’s wholesale price of $6,992.  

The Pharmaceutical Care Management Association, which represents the big PBMs, told KFF Health News in a statement that its members are pushing to use more of the biosimilars. Why then, asks Juliana Reed, CEO of the Biosimilars Forum trade group, did Humira account for 98.5 percent of all sales of the drug and its biosimilars as recently as November?

I’ve been told that AbbVie has threatened to withhold rebates it pays PBMs for some of its other medicines unless they give Humira good placement on formularies, the all-important lists of drugs available to their customers. The PBMs say their formularies provide the best deal for employers, but these are “assertions impossible to verify,” says James Gelfand, president and CEO of The ERISA Industry Committee, which represents large employers.

The PBMs’ strategy is purposefully obscure. Negotiations with drugmakers constitute their special sauce and they aren’t sharing the ingredients. But given that it costs up to $300 million to develop a biosimilar, the Humira battle is key to the future of biosimilars in general, and to more competition to lower expensive drug prices.

“If you can’t break into anti-inflammatory drugs it will be hard to break into any model,” Gelfand said. “It’s the weather vane, the shape of things to come.”

There’s more weird stuff going on with biosimilars. To get Inflectra, its biosimilar to Johnson & Johnson’s blockbuster Remicade, onto formularies, Pfizer pays large rebates to insurers, I’ve been told.

That’s driven down average net prices for Inflectra as well as other versions of the drug. 

Good, right? Not according to rheumatologists, the doctors who typically administer these complicated, infused drugs in their offices.

The doctors say they still have to pay much higher prices to obtain Inflectra from distributors. But their reimbursement from Medicare is reduced because of the rebates, they say. Several rheumatologists told me that the way the math works out — or rather, doesn’t — they could lose as much as $20,000 a year on each patient. 

The choice is “lose money, or divert the patient to a hospital infusion center,” said Chris Phillips, a doctor in Paducah, Ky., who chairs the American College of Rheumatology’s insurance subcommittee. The latter is “more expensive and usually not as good an experience for the patient.”

Payment imbalances also have developed for Amgen’s Avsola, another Remicade biosimilar, and for biosimilar forms of Genentech’s Rituxan, a cancer drug also infused to treat autoimmune conditions, rheumatologists say.

“The whole point of biosimilars is to make these drugs more accessible, but they’re becoming unaffordable,” said Madelaine Feldman, immediate past president of the Coalition of State Rheumatology Organizations. 

Spokespeople for Pfizer and for the Pharmaceutical Care Management Association acknowledged the rheumatologists’ dilemma. Each said it was up to the other to resolve the problem.

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

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This story can be republished for free (details).