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Julie Rovner
KFF Health News

@jrovner

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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.

If Congress fails to raise the nation’s debt ceiling in the next few months, the U.S. could default on its debt for the first time in history. Republicans in Congress, however, say they won’t agree to pay the nation’s bills unless Democrats and President Joe Biden agree to deep cuts to health and other programs. Among the proposals in a bill House Republicans passed April 26 is the imposition of new work requirements for adults who receive Medicaid.

Meanwhile, many of the states passing restrictions on abortion are also passing bills to restrict the ability of trans people to get health care. The two movements — both largely aimed at conservative evangelicals, a key GOP constituency — have much in common.

This week’s panelists are Julie Rovner of KFF Health News, Jessie Hellmann of CQ Roll Call, Shefali Luthra of The 19th, and Sarah Karlin-Smith of the Pink Sheet.

Panelists

Jessie Hellmann
CQ Roll Call

@jessiehellmann

Read Jessie's stories

Shefali Luthra
The 19th

@Shefalil

Read Shefali's stories

Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories

Among the takeaways from this week’s episode:

• The Republican-controlled House’s proposal to raise the debt ceiling contains enough politically poisonous measures that the plan is a non-starter in the Senate. They include substantial funding cuts to major federal health programs, including the FDA and the National Institutes of Health — cuts that would force the federal government to cut back on grants and other funding.
• The proposal would also impose work requirements on adults enrolled in Medicaid — which covers low-income and disabled Americans, as well as pregnant women — and in the Supplemental Nutrition Assistance Program, which helps needy families buy food. Under the plan, the government would save money by cutting the number of people helped. But most beneficiaries cannot work or already do so. Experience shows the change would mostly affect people who struggle to report their work hours through what can be complicated online portals.
• Multiple congressional committees have released plans to fight high drug costs, promoting efforts to explore how pharmacy benefit managers make decisions about cost and access, as well as to encourage access to cheaper, generic drugs on the market. And during congressional testimony this week, the administrator of the Centers for Medicare & Medicaid Services, Chiquita Brooks-LaSure, said the agency would no longer issue warnings to hospitals that fail to comply with a law that requires them to post their prices, but instead would move directly to fining the holdouts.
• Also in news about cost-cutting legislation, a plan to address an expensive glitch in Medicare payments to hospital outpatient centers and physician offices is gaining steam on Capitol Hill. Hospital consolidation has helped increase costs in the health care system, and lawmakers are eager to keep health spending under control. But the hospital industry is ramping up advertising to make sure lawmakers think twice before legislating.
• In abortion news, it will likely be at least a year before the Supreme Court rules on whether the abortion pill mifepristone should remain accessible. Some justices suggested in last summer’s Dobbs decision, which overturned abortion rights, that they would leave further abortion questions to the states, yet the nation is finding that overturning a half-century of legal precedent is messy, to say the least. Meanwhile, reporting and polling are revealing just how difficult it is for doctors in states with abortion bans to determine what constitutes a “medical emergency” worthy of intervention, with a grim consensus emerging that apparently means “when a woman is near death.”

Also this week, Rovner interviews Renuka Rayasam, who wrote the latest KFF Health News-NPR “Bill of the Month” feature, about a pregnant woman experiencing a dangerous complication who was asked to pay $15,000 upfront to see one of the few specialists who could help her. If you have an outrageous or exorbitant medical bill you want 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: The Nation’s “The Poison Pill in the Mifepristone Lawsuit That Could Trigger a National Abortion Ban,” by Amy Littlefield.

Shefali Luthra: The Washington Post’s “The Conservative Campaign to Rewrite Child Labor Laws,” by Jacob Bogage and María Luisa Paúl.

Jessie Hellmann: Politico’s “Gun Violence Is Actually Worse in Red States. It’s Not Even Close,” by Colin Woodard.

Sarah Karlin-Smith: The Wall Street Journal’s “Weight-Loss Drugmakers Lobby for Medicare Coverage,” by Liz Essley Whyte.

Also mentioned in this week’s episode:

• In Oklahoma, a Woman Was Told to Wait Until She’s ‘Crashing’ for Abortion Care,” by Selena Simmons-Duffin.
• Anti-Trans Bills Have Doubled Since 2022. Our Map Shows Where States Stand,” by Annys Shin, N. Kirkpatrick, and Anne Branigin.

click to open the transcript

Transcript: Dancing Under the Debt Ceiling

KFF Health News’ ‘What the Health?’

Episode Title: Dancing Under the Debt Ceiling

Episode Number: 295

Published: April 27, 2023

[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent at 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, April 27, at 10 a.m. As always, news happens fast — really fast this week — and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Jessie Hellmann of CQ Roll Call.

Jessie Hellmann: Good morning.

Rovner: Sarah Karlin-Smith, the Pink Sheet.

Sarah Karlin-Smith: Hi, everybody.

Rovner: And Shefali Luthra of The 19th.

Shefali Luthra: Hello.

Rovner: Later in this episode, we’ll have our KFF Health News-NPR “Bill of the Month” interview with Renuka Rayasam. This month’s patient had a happy ending medically, but a not-so-happy ending financially. But first, the news. We’re going to start this week with the budget and, to be specific, the nation’s debt ceiling, which will put the U.S. in default if it’s not raised sometime in the next several weeks, not to panic anyone. House Republicans, who have maintained all along that they won’t allow the debt ceiling to be raised unless they get spending cuts in return, managed to pass — barely — a bill that would raise the debt ceiling enough to get to roughly the middle of next year. It has no chance in the Senate, but it’s now the Republicans’ official negotiating position, so we should talk about what’s in it. It starts with a giant cut to discretionary spending programs. In health care that includes things like the National Institutes of Health, most public health programs, and the parts of the FDA that aren’t funded by user fees. I mean, these are big cuts, yes?

Hellmann: Yeah, it’s about a 14% cut to some of these programs. It’s kind of hard to know exactly what that would mean. But yeah, it’s a big cut and there would have to be, like, a lot of changes made, especially to a lot of health care programs, because that’s where a lot of spending happens.

Rovner: Yeah, I mean, sometimes they’ll agree on cuts and it’ll be like a 1% across the board, which itself can be a lot of money. But I mean, these are, these are sort of really deep cuts that would seriously hinder the ability of these programs to function, right?

Karlin-Smith: NIH for a number of years was operating on only getting budget increases that were not keeping up kind of with inflation and so forth. And they just finally, over the last few years, got back on track. Even though their budget seemed like it was going up, really, if you adjusted for inflation, it had been going down. And then when you have an agency like FDA, which, the line is always that they do an incredible amount of work on really a shoestring budget for the amount they regulate, so they never get — NIH sometimes gets, you know, that bipartisan popularity and does get those bigger increases back, and they never really get those big increases, so I think it would be harder for them also to get that back later on if they did get such big cuts.

Hellmann: There are like also a lot of health programs that just operate on flat funding from year to year, like Title X.

Rovner: Yeah, the family planning program.

Hellmann: And so obviously, like HHS said last year, We are only able to fund a certain number of providers, like, less than previously, because of inflation, and stuff like that. So obviously if you take a 14% cut to that, it would make it even harder.

Rovner: All right. Another major proposal in the package would institute or expand work requirements for people on food stamps and on Medicaid. Now, we’ve had work rules for people on welfare since the 1990s, but most people on Medicaid and food stamps, for that matter, either already work or can’t work for some reason. Why are the Republicans so excited about expanding or instituting work requirements?

Hellmann: I think there are a few reasons. No. 1, it’s a big money saver. The CBO [Congressional Budget Office] came out with their analysis this week showing that it would save the federal government about $109 billion. A lot of that would be shifted to the states because the way the bill is written, states would still be allowed to cover these individuals if they can’t prove that they’re working. But they’d have to pick up the costs themselves, which, I’ve seen experts questioning if that would really happen, even in states like, you know, New York and California, who probably wouldn’t want these people to lose coverage. But I think an argument that you hear a lot too, especially during the Trump administration when they were really pushing these, is they say that work is what provides fulfillment and dignity to people. Former CMS [Centers for Medicare & Medicaid Services] administrator Seema Verma talked about this a lot. The argument I heard a lot on the Hill this week is that Medicaid and other — SNAP [Supplemental Nutrition Assistance Program], TANF [Temporary Assistance for Needy Families], programs like that — trap people in poverty and that work requirements will kind of give them an incentive to get jobs. But as you said, like, it wouldn’t apply to most — you know, most people are already working. And most people who lost coverage under some of the previous iterations of this just didn’t know about it or they were unable to complete the reporting requirements.

Rovner: And to be clear, the CBO estimate is not so much because people would work and they wouldn’t need it anymore. It’s because people are likely to lose their coverage because they can’t meet the bureaucratic requirements to prove that they’re working. Shefali, you’re nodding. We’ve seen this before, right?

Luthra: I was just thinking, I mean, the savings, yes, they come from people losing their health insurance. That’s very obvious. Of course, you save money when you pay for fewer people’s coverage. And you’re absolutely right: “This will motivate people to work” argument has always been a little bit — complicated is a generous word. I think you could even say it’s a bit thin just because people do already work.

Rovner: And they — many of them work, they don’t earn enough money, really, to bring them out of poverty. And they don’t have jobs that offer health insurance. That’s the only way they’re going to get health insurance. All right. Well, where do we go from here with the debt ceiling? So now we’ve got this Republican plan that says work — everybody has to work and prove that they work and we’re going to cut all these programs — and the Democrats saying this is not a discussion for the debt ceiling, this is a separate discussion that should happen down the road on the budget. Is there any sign that either side is going to give here?

Hellmann: It doesn’t seem like it. Democrats have been saying, like, this is a non-starter. The president has been saying, like, we’re not going to negotiate on this; we want a clean increase in the debt ceiling, and we can talk about some of these other proposals that you want to pursue later. But right now, it seems like both sides are kind of at a standstill. And I think Republicans see, like, passing this bill yesterday as a way to kind of strengthen their hand and show that they can get all on the same page. But I just do not see the Senate entertaining a 14% cut or, like, Medicaid work requirements or any of this stuff that is just kind of extremely toxic, even to some, like, moderate Democrats over there.

Rovner: Yeah, I think this is going to go on for a while. Well, so at this high level, we’ve got this huge partisan fight going on. But interestingly, this week elsewhere on Capitol Hill things seem surprisingly almost bipartisan, dare I say. Starting in the Senate, the chairman and the ranking member of the Health, Education, Labor and Pensions Committee, Democrat Bernie Sanders and Republican Bill Cassidy, announced that they’ve reached agreement on a series of bills aimed at reining in prescription drug costs for consumers, including one to more closely regulate pharmacy benefit managers and others to further promote the availability of generic drugs. Sarah, we’ve talked about the target on the backs of PBMs this year. What would this bill do and what are the chances of it becoming law?

Karlin-Smith: So this bill does three things: One is transparency. They want to pull back the cover and get more data and information from PBMs so that they can better understand how they’re working. So I think the idea would then be to take future policy action, because one of the criticisms of this industry is it’s so opaque it’s hard to know if they’re really doing the right thing in terms of serving their customers and trying to save money and drug prices as they say they are. The other thing is it would basically require a lot of the fees and rebates PBMs get on drug prices to be given back directly to the health plan, which is sort of interesting because the drug industry has argued that money should be given more directly to patients who are paying for those drugs. And when that has scored by the CBO, that often costs money because that leads to PBMs using less money to lower people’s premiums, and premiums are subsidized from the government. So I’m curious if the reason why they designed the bill this way is to sort of get around that, although then I’m not sure exactly if you get the same individual … [unintelligible] … level benefit from it. And then the third thing they do is they want to eliminate spread pricing, which is where — this is really a pharmacy issue — where PBMs basically reimburse pharmacies less than they’re charging the health plans and, you know, their customers for the drug and kind of pocketing the difference. So I think, from what I’m seeing on the Hill, there’s a ton of momentum to tackle PBMs. And like you said, it’s bipartisan. Whether it’s this bill or which particular bills it’s hard to know, because Senate Finance Committee is sort of working on their own plan. A number of committees in the House are looking at it, other parts of the Senate. So to me, it seems like there’s reasonable odds that something gets done maybe this spring or summer on PBMs. But it’s hard to know, like, the exact shape of the final legislation. It’s pretty early at this point to figure out exactly how it all, you know, teases out.

Rovner: We have seen in the past things that are very bipartisan get stuck nonetheless. Well, across the Capitol, meanwhile, the House Energy and Commerce Committee is also looking at bipartisan issues in health care, including — as they are in the Senate — how to increase price transparency and competition, which also, I hasten to add, includes regulating PBMs. But, Jessie, there was some actual news out of the hearing at Energy and Commerce from Chiquita Brooks-LaSure, who runs the federal Medicare and Medicaid programs. What did she say?

Hellmann: So they’ve instituted two fines against hospitals that haven’t been complying with the price transparency requirements. So I think that brings the number of hospitals that they’ve fined to, like, less than five. Please fact-check that, but I’m pretty sure that I can count it on one hand.

Rovner: One hand. They have, they have actually fined a small number of hospitals under the requirement. Yeah. I mean, we’ve known — we’ve talked about this for a while, that these rules have been in effect since the beginning of 2022, right? And a lot of hospitals have just been not doing it or they’re supposed to be showing their prices in a consumer-understandable way. And a lot of them just haven’t been. And I assume CMS is not happy with this.

Hellmann: Yeah, so Brooks-LaSure said yesterday that CMS is no longer going to issue warnings for hospitals that aren’t making a good-faith effort to comply with these rules. Instead, they’ll move straight to what’s called the corrective action phase, where basically hospitals are supposed to, like, say what they’re going to do to comply with these. And after that, they could get penalized. So we’ll see if that actually encourages hospitals to comply. One of the fines that they issued is like $100,000. And so I think some hospitals are viewing this, you know, as a cost of doing business because they think it would cost them more to comply with the price transparency rules than it would to not comply with them.

Rovner: So transparency here is still a work in progress. There’s also a fight in the House over the very wonky-sounding site-neutral payment policy in Medicare, which, like the surprise bill legislation from a few years back, is not so much a partisan disagreement as a fight between various sectors in the health care system. Can you explain what this is and what the fight’s about?

Hellmann: So basically hospital outpatient departments or, like, physician offices owned by hospitals get paid more than, like, independent physician’s offices for providing things like X-rays or drug administration and stuff like that. And so this is —

Rovner: But the same care. I mean, if you get it in a hospital outpatient or a doctor’s office, the hospital outpatient clinic gets paid more.

Hellmann: Yeah. And there’s not much evidence that shows that the care is any different or the quality is better in a hospital. And so this has kind of been something that’s been getting a lot of attention this year as people are looking for ways to reduce Medicare spending. It would save billions of dollars over 10 years, I think one think tank estimated about 150 billion over 10 years. It’s getting a lot of bipartisan interest, especially as we talk more about consolidation in hospitals, you know, buying up these physician practices, kind of rebranding them and saying, OK, this is outpatient department now, we get paid more for this. There are fewer independent physician’s offices than there used to be, and members have taken a really big interest in how consolidation increases health care prices, especially from hospitals. So it does seem like something that could pass. I will say that there is a lot of heat coming from the hospital industry. They released an ad on Friday last week warning about Medicare cuts, so, they usually do whenever anyone talks about anything that could hurt their bottom lines. Very generalist ad and kind of those “Mediscare” ads that we’ve been talking about. So it’ll be interesting to see if members can withstand the heat from such a powerful lobbying force.

Rovner: As we like to say, there’s a hospital in every single district, and most of them give money to members of Congress, so anything that has the objection of the hospital industry has an uphill battle. So we’ll see how this one plays out. Let us turn to abortion. The fate of the abortion pill mifepristone is still unclear, although the Supreme Court did prevent even a temporary suspension of its approval, as a lower court would have done. Now the case is back at the 5th Circuit Court of Appeals, which has swiftly scheduled a hearing for May 17. But it still could be months or even years before we know how this is going to come out, right, Shefali?

Luthra: It absolutely could be. So the fastest that we could expect to see this case before the Supreme Court again, just — what from folks I’ve talked to is, I mean, we have this hearing May 17, depending on how quickly the 5th Circuit rules, depending on how they rule, there is a chance that we could see if we get, for instance, an unfriendly ruling toward mifepristone, the federal government could appeal to the Supreme Court this summer. We could see if the Supreme Court is willing to take the case. The earliest that means that they would hear it would be this fall, with a decision in the spring a year from now, but that would be quite fast. I think what’s striking about it is that we may all recall last year, when the Supreme Court issued its decision in the Dobbs case, they said this will put the issue of abortion back in the hands of the states, out of the judiciary, we will no longer be involved. And anyone at the time could have told you there’s no way that this would happen because it is too complicated of an issue, when you undo 50 years of precedent, to assume there will be no more legal questions. And here we are. Those critics have been proven right, because who could have seen that, once again, we’d have the courts being asked to step in and answer more questions about what it means when a 50-year right is suddenly gone?

Rovner: Indeed. And of course, we have the … [unintelligible] … This is going to be my next question, about whether this really is all going to be at the state level or it’s going to be at the state and the federal level. So as red states are rushing to pass as many restrictions as they can, some Republicans seem to be recognizing that their party is veering into dangerously unpopular territory, as others insist on pressing on. We saw a great example of this over the weekend. Former vice president and longtime anti-abortion activist Mike Pence formally split on the issue with former President Trump, with Pence calling for a federal ban and not just leaving the issue to the states. Nikki Haley, the former governor of South Carolina and the lone woman in the Republican field so far, managed to anger both sides with the speech she made at the headquarters of the hard-line anti-abortion group the Susan B. Anthony List. Haley’s staff had suggested ahead of time that she would try to lay out a middle ground, but she said almost nothing specific, which managed to irritate both full abortion abolitionists and those who support more restrained action. Is this going to be a full-fledged war in the Republican Party?

Luthra: I think it has to be. I mean, the anti-abortion group is still very powerful in the Republican Party. If you would like to win the nomination, you would like their support. That is why we know that Ron DeSantis pursued a six-week ban in Florida despite it being incredibly unpopular, despite it now alienating many people who would be his donors. This is just too important of a constituency to annoy. But unfortunately, you can’t really compromise on national abortion policy if you’re running for president. A national ban, no matter what week you pick, it’s not a good sound bite. We saw what happened last year when Sen. Lindsey Graham put forth his national 15-week ban: Virtually no other even Republicans wanted to endorse that, because it’s a toxic word to say, especially in this post-Dobbs environment, especially now that we have all of this polling, including NPR polling from yesterday, that showed us that abortion bans remain quite unpopular and that people don’t trust Republicans largely on this issue. I think this is going to be incredibly interesting because we are going to eventually have to see Nikki Haley take a stance. We will have to see Donald Trump, I think, frankly, be a bit more committal than he has been, because meanwhile, he has lately told people publicly that he would not issue any federal policy, would leave this up to the states, we also know that he has said different things in other conversations. And at some point those conflicts are going to come to a head. And what Republicans realize is that their party’s stance and the stance they need to take to maintain favor with this important group is just not a winning issue for most voters. People don’t want abortion banned.

Rovner: Yeah, it’s a real problem. And Republicans are seeing they have no idea how to sort of get out of this box canyon, if you will. Well, back in the states, things seem to be getting even more restrictive. In Oklahoma this week NPR has another of those wrenching stories about pregnant women unable to get emergency health care. This time, a woman, a mom of three kids already with a nonviable and cancerous pregnancy who was told literally to wait in the hospital parking lot until she was close enough to death to obtain needed care. And that case turned out not to be an outlier. A quote-unquote “secret shopper” survey of hospitals in Oklahoma found that a majority of the 34 hospitals contacted could not articulate what their policy was in case of pregnancy complications or how they would determine if the pregnant person’s life was actually in danger. I can’t imagine Oklahoma is the only state where this is the case. We have a lot of these bans and no idea where sort of the lines are, even if they have exceptions.

Luthra: We know that this is not isolated to Oklahoma. There is a lawsuit in Texas right now with a group of women suing the state because they could not access care that would save their lives. One of those plaintiffs testified in Congress about this yesterday. Doctors in virtually every state with an abortion ban have said that they do not know what the medical exceptions really are in practice other than that they have to wait until people are on death’s door because there isn’t — medical emergency isn’t really a technical term. These bills, now laws, were written without the expertise of actual physicians or clinicians because they were never really supposed to take effect. This really has been just another example of a way that the dog chased the car and now the dog has the car.

Rovner: And the dog has no idea what to do with the car. Well, meanwhile, in Iowa, the attorney general has paused the state’s policy of paying for abortions as well as emergency contraception for rape victims. This is where I get to rant briefly that emergency contraception and the abortion pill are totally different, that emergency contraception does not cause abortion — it only delays ovulation after unprotected sex and thus is endorsed for rape victims in Catholic health facilities across Europe. OK, end of rant. I expect we’re going to see more of this from officials in red states, though, right, with going — not just going after abortions, but going after things that are not abortion, like emergency contraception.

Luthra: And I mean, if we look at what many of the hard-line anti-abortion groups advocate, they don’t just want to get rid of abortion. They specifically name many forms of hormonal contraception, but specifically the emergency contraception Plan B, and they oppose IUDs [intrauterine devices]. It would just be so, so surprising if those were not next targets for Republican states.

Rovner: So abortion isn’t the only culture war issue being fought out in state legislatures. There’s also a parallel effort in lots of red states to curtail the ability of trans people, mostly but not solely teenagers, to get treatment or, in some cases, to merely live their lives. According to The Washington Post, as of the middle of this month, state legislators have introduced more than 400 anti-trans bills just since January. That’s more than the previous four years combined. Nearly 30 of them have become law. Now, I remember in the early aughts when anti-gay and particularly anti-gay marriage bills were the hot items in red states. Today, with some notable exceptions, gay marriage is as routine as any other marriage. Is it possible that all these attacks on trans people, by making them more visible, could have the same effect? In other words, could this have the opposite effect as the people who are pushing it intended? Or am I just looking for a silver lining here?

Luthra: I think it’s too soon to say. There isn’t incredible polling on this issue, but we do know that in general, like, this is not an issue that even Republicans pick their candidates for. It’s not like they are driven to the ballot box because they hate trans people this much. I wouldn’t at all be surprised if there is a backlash, just because what we are hearing is so, frankly, horrific. What I have been really struck by, in addition to the parallels to anti-gay marriage, have been the ways in which restrictions on access to health care for trans people really do parallel attacks to abortion in particular, thinking about, for instance, passing laws that restrict access to care for minors, passing laws that restrict Medicaid from paying for care, that restrict how insurance covers for care. It’s almost spooky how similar these are, because people often think minors are easier to access first. People often think health insurance is an easier, sort of almost niche issue to go for first. And what we don’t often see until afterward is that these state-by-state laws have made care largely inaccessible. The other thing that I think about all the time is that these are obviously, in both cases, forms of health care restriction that are largely opposed by the medical community, that are often crafted without the input of actual medical expertise, and that target health care that does feel incredibly difficult to extricate from the patient’s gender.

Rovner: Yeah. The other thing is that people are going from state to state, just like with abortion. In order to get health care, they’re having to cross state lines and in some cases move. I mean, we’re starting to see this.

Luthra: The high-profile example being Dwyane Wade, formerly of the Miami Heat, moving away from Florida because of his child.

Karlin-Smith: The other thing, Julie, you were saying in terms of how optimistic to be, in terms of maybe the other side of this issue sort of pushing back and overcoming it, is that Politico had this good story this week about doctors in states where this care is perfectly legal and permissible but they’re getting so many threats and essentially their health care facilities feel that they’re so much in danger that they are concerned about how to safely provide and help these people that they do want to help and give care, while also not putting their families and so forth in danger, which perhaps also has a parallel to some of how there’s tons of, like, constant protests outside abortion clinics. And people have volunteered for years just to kind of escort people so they can safely feel comfortable getting there, which of course is, you know, can be very traumatic to patients trying to get care.

Rovner: Yeah, the parallels are really striking. So we will watch that space too. All right. That is the news for this week. Now, we will play my “Bill of the Month” interview with Renuka Rayasam. Then we will come back and share our extra credit. We are pleased to welcome to the podcast Renuka Rayasam, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” story. Renu, welcome to “What the Health?”

Renuka Rayasam: Thanks, Julie. Thanks for having me.

Rovner: So this month’s patient was pregnant with twins when she experienced a complication. Tell us who she is, where she’s from, and what happened.

Rayasam: Sure. Sara Walsh was 24 weeks pregnant with twins — it was Labor Day weekend in 2021 — and she started to feel something was off. She had spent a long time waiting to have a pregnancy that made it this far — eight years, she told me. But instead of feeling excited, she started to feel really nervous and she knew something was off. And so on Tuesday, she went to her regular doctor. And then on Wednesday, after that Labor Day, she went to her maternal fetal specialist, who diagnosed her with a pretty rare pregnancy complication that can occur when you have twins, when you have multiple fetuses that share blood unevenly through the same placenta. And it’s called twin-to-twin transfusion syndrome. And, you know — and this was Wednesday — she went into the office in the morning and she waited a long time for the doctor to kind of come back with the results, she and her husband, and just kind of spent the morning sort of back-and-forth between her maternal fetal specialist and her OB-GYN. And they told her she needed to get treatment immediately, that if she didn’t have treatment that she could lose one or both twins, she herself could even die. She needed to keep her fluid intake low. So they referred her to a specialist about four hours away from where she was. She was in Winter Haven, Florida, and they referred her to a specialist near Miami. And the specialist there apparently does not contract with any private insurance. And so that afternoon, hours after her diagnosis, she was packing her bags; she was getting ready to go, figuring out a place to stay, a hotel room and all that. And she gets a call from the billing office of this specialist in Coral Gables, Florida, near Miami. And they said, “Listen, we don’t contract with private insurance. You have to pay upfront for the pre surgical consultation for the surgery and then the post-surgical consult. And you need to have that money before you show up tomorrow in our office at 8 a.m.”

Rovner: And how much money was it?

Rayasam: About $15,000 in total for the consultations and the surgery itself. She told me she burst into tears. She didn’t want to lose these twins. She wasn’t given any option of shopping around for another provider. And she spent some time trying to figure out what to do. She couldn’t get a medical credit card because I guess there’s a 24-hour waiting period and she didn’t have that long. And so finally, her mother let her borrow her credit card. She checked into a hotel at midnight and at 8 a.m. the next morning she handed over her credit card and her mother’s credit card before she could have the procedure — before she could even see the doctor, I should say.

Rovner: And the outcome was medically good, right?

Rayasam: Yeah. The provider who did her surgery is a pioneer in this field. And that was why those doctors sent Sara to this provider, Dr. Ruben Quintero. He came up with this staging system that helps assess the symptom’s severity and even pioneered the treatment for it. But he sort of used all that to kind of say, OK, you have to pay me; I’m not even going to deal with insurance in this case. And so that afternoon, it was that Thursday, the day after she was diagnosed, she had a procedure, it went well, she had a couple of follow-ups in the following weeks. And then five weeks later, she delivered premature but otherwise healthy twin girls.

Rovner: So is that even legal for a doctor to say, “I’m not even going to look at you unless you pay me some five-figure amount”?

Rayasam: Generally, no. We have the federal No Surprises Act, as you know, and that’s meant to do away with surprise billing. But that was really designed for kind of inadvertent medical bills or surprises. Things get really complicated when there’s this appearance of choice where, you know, she had time to call the insurer, she had time to call the provider. It wasn’t as if she was unconscious and sort of rushed to the nearest doctor. Technically, she had a choice here. She could have chosen not to get the procedure. She could have gone to a different state. But obviously, those are not real choices in her situation when she needed the procedure so urgently. And so in those cases, you know, the billing experts I spoke with said this is a real loophole in federal billing legislation and state surprise billing legislation because the bill wasn’t a surprise. She knew how much to expect upfront. And that’s what makes this situation tricky.

Rovner: And she knew that the doctor wasn’t in network.

Rayasam: Absolutely. She knew the doctor wasn’t in network, and she knew how much she had to pay, and she willingly forked over the money, of course, as anyone would have in that situation or tried to in that situation.

Rovner: So after the fact, she went back to her insurance company to see if they could work something out, since it was pretty much the only place she could have gone at that point to get the treatment. But that didn’t go so well.

Rayasam: That didn’t go so well, and it’s one complication in this story that I myself don’t know what to make of, but the provider does not contract with any insurer, I should say. But he did take her insurance card and — or, the billing person did — and they say that they bill as a courtesy to the patient. So they file the paperwork for the patient. They say, “OK, your insurer will reimburse you. We’re going to provide all the paperwork.” In Sara’s case, it took a long time for this doctor and his practice to get Blue Cross Blue Shield the paperwork they needed to kind of pay for her claim. And in addition to that, they didn’t really send over the right paperwork right away. So it took a long time. And eventually she got only $1,200 back and she ended up paying far more than that out-of-pocket.

Rovner: And of course, the next obvious question is, doesn’t her insurance have an out-of-pocket maximum? How did she ever end up spending this much?

Rayasam: That’s a great question. We reached out to her insurer, and they didn’t really give us much of an explanation, but they, you know, on their billing statements and what they said to her was, “Hey, you went willingly out of network; this doesn’t qualify you for those out-of-pocket maximums.” They didn’t give us an explanation as to why. This seems to be a classic case of where those maximums should apply. But like I said, I think, you know, she had very little recourse. She tried to appeal the bills. She’s, you know, been on the phone with her insurer multiple times. The thing that makes this story more complicated is that it’s such a rare procedure and there aren’t that many providers in the country that even perform this procedure. So at first she was having to struggle with billing codes and all that with her insurance, so a lot of the people she was dealing with on the insurance side were really confused. It wasn’t something that they had a playbook for, knew what to do with, and that’s what made this a little bit more complicated.

Rovner: So what’s the takeaway here? I mean, obviously this was a rare complication, but if you multiply the number of rare complications of different things, you’re talking about a lot of people. Is there any way to get around this? I mean, it sounds like she did everything she could have in this case.

Rayasam: She did. In this case, it turns out there was another provider in Florida. There was no way for her to know that. Neither her OB-GYN nor the maternal fetal specialist told her about this other provider. I found out about it. I called around and did the reporter thing. And there are now four providers in Florida that will treat this. But of course, you know, if I was a patient, I wouldn’t shop around and risk my pregnancy either. So it’s unfortunate, in this case, there’s not much a person can do other than make sure that they’re keeping all the paperwork. And, you know, one thing that one of the billing experts I spoke with told me is that when you pay upfront, it makes things a lot harder. And in this case, like I said, she didn’t have a choice. But if there’s ever a way to get the bill on the back end, then there’s more of an incentive for the provider and the insurer to work together to get paid. But once the provider was paid, the insurer is not going to rush to reimburse the patient.

Rovner: And the provider is not going to rush to help the insurer figure out what to do. Ah well, another cautionary tale. Renu Rayasam, thank you so much.

Rayasam: Thank you.

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

Karlin-Smith: Sure. I took a look at a story in The Wall Street Journal, “Weight-Loss Drugmakers Lobby for Medicare Coverage. Adding Ozempic, Mounjaro to federal plans could stoke sales.” It really documents well sort of the range of lobbying organizations and groups and where they’re sort of putting money to try and get Medicare to shift its policies and cover treatments for obesity, which was something that in the early creations of Part D was banned. And I think largely at that time it was because weight loss was seen as more of a cosmetic treatment than something that impacted health in the same way we appreciate now.

Rovner: And also, there wasn’t anything that worked.

Karlin-Smith: Right. The things that prior to this, the things that were available at different times were not very effective and in some cases turned out to be fairly unsafe. And of course, now we have treatments that seem to work very well for a number of people, but there’s a fear of just how much money it would cost Medicare. So the other interesting thing in this story is they talk about some lawmakers in Congress thinking about ways to maybe narrowly start opening the floodgates to access by potentially maybe limiting it to people with certain BMIs [body mass indexes] or things like that to maybe not have the initial cost hit they might be concerned about with it.

Rovner: And of course, whether Medicare covers something is going to be a big factor in whether private insurance covers something. So it’s not just the Medicare population I think we’re talking about here.

Karlin-Smith: Right. There’s already I know lobbying going on around that. My colleague wrote a story a few weeks ago about Cigna sort of pushing back about having those drugs be included potentially in, like, the essential health benefits of the ACA [Affordable Care Act]. So it’s going to be, yeah, a broader issue than just Medicare.

Rovner: Yeah, it’s a lot. I mean, I remember when the hepatitis C drugs came out and we were all so, you know, “Oh my God, how much this is going to cost, but it cures hepatitis C.” But I mean, that’s not nearly as many people as we’re talking about here. Jessie, why don’t you go next?

Hellmann: My stories from Politico. It’s called “Gun Violence Is Actually Worse in Red States. It’s Not Even Close.” It takes a weird twist that I was not expecting. Basically, the premise is about how gun deaths are actually higher in areas like Texas and Florida. They have higher per capita firearm deaths, despite messaging from some Republican governors that it’s actually, like, you know, cities like Chicago and New York that are like war zones, I think it’s the former president said. The author kind of makes an interesting argument I didn’t see coming about how he thinks who colonized these areas plays into kind of like the culture. And he argues that Puritans like had more self-restraint for the common good. And so areas like that have less firearm deaths where, you know, the Deep South people were — had like a belief in defending their honor, the honor of their families. So they were kind of more likely to take up arms. Not sure how I feel about this argument, but I thought it was an interesting story and an interesting argument, so —

Rovner: It is. It’s a really good story. Shefali.

Luthra: My story is from The Washington Post. It is called “The Conservative Campaign to Rewrite Child Labor Laws.” It’s a really great look at this Florida-based group called the Foundation for Government Accountability, which, despite its innocuous-sounding name, is trying to help states make it easier to employ children. This is really striking because we have seen, in states like Arkansas, efforts to make it easier to employ people younger than 16 in some cases, which is just really interesting to watch in these states that talk about protecting children and protecting life to, to then make it easier to, to employ kids.

Rovner: And in dangerous profess — in dangerous jobs sometimes. I mean, we’re not talking about flipping burgers.

Luthra: No, no. We’re talking about working in, like, in meat plants, for instance. But I think what’s also interesting is that this same organization that has made it easier to employ children has also tried to fight things like anti-poverty and try to fight things like Medicaid expansion, which is just sort of, if you’re thinking about it from an access-to-health standpoint, like, anti-poverty programs and Medicaid are shown to make people healthier. It’s sort of a really interesting look into a worldview that in many ways uses one kind of language but then advance the policy agenda that takes us in a different direction.

Rovner: Maybe we should go back to to Jessie’s story and depend on who settled that part of the country. We shall see. Speaking of history, my story’s from The Nation, and it’s called “The Poison Pill in the Mifepristone Lawsuit That Could Trigger a National Abortion Ban,” by Amy Littlefield. And it’s about the Comstock Act, which is a law from the Victorian era — it was passed in 1873 — that banned the mailing of, quote, “lewd materials,” including articles about abortion or contraception. A lot has been written about the Comstock Act of late because it was used to justify part of the opinion in the original mifepristone case out of Amarillo. But what this article makes clear is that reviving the law is actually a carefully calculated strategy to make abortion illegal everywhere. So this is not something that just popped up in this case. It’s a really interesting read. OK, that is our show. As always. if you enjoyed the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us too. Special thanks, as always, to our ever-patient producer, Francis Ying. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me, at least for now. I’m @jrovner. Sarah?

Karlin-Smith: I’m @SarahKarlin.

Rovner: Jessie.

Hellmann: @jessiehellmann.

Rovner: Shefali.

Luthra: @Shefalil.

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

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Sadé Lewis of Queens, New York, has suffered migraines since she was a kid, and as she started college, they got worse. A recent change in her insurance left the 27-year-old looking for a new neurologist. That’s when she found West 14 Street MedicalArts in New York.

MedicalArts recommended that she get an electroencephalogram (EEG) and an MRI to make sure her brain was functioning properly.

An EEG is a test to measure the electrical activity of the brain. It can find changes in brain activity that can help in diagnosing conditions including epilepsy, sleep disorders, and brain tumors. During the procedure, electrodes consisting of small metal discs with attached wires are pasted onto the scalp using adhesive, or attached to an electrode cap that you wear on your head.

A little over a week before her EEG, Lewis was given instructions that she didn’t remember getting before a previous EEG appointment.

To Lewis’ surprise, patients were told to remove all hair extensions, braids, cornrows, wigs, etc. Also, she was to wash her hair with a mild shampoo the night before the appointment and not use any conditioners, hair creams, sprays, oils, or styling gels.

“The first thing I literally did was text it to my best friend, and I was, like, this is kind of anti-Black,” Lewis said. “I just feel like it creates a bunch of confusion, and it alienates patients who obviously need these procedures done.”

The restrictions could discourage people with thick, curly, and textured hair from going forward with their care. People with more permanent styles like locs — a hairstyle in which hair strands are coiled, braided, twisted, or palm-rolled to create a rope-like appearance — might be barred from getting the test done.

Kinky or curly hair textures are typically more delicate and susceptible to damage. As a result, people with curlier hair textures often wear protective hairstyles, such as weaves, braids, and twists, which help maintain hair length and health by keeping the ends of the hair tucked away and minimizing manipulation.

After receiving the instructions, Lewis scoured the internet and social media channels to see if she could find more information on best practices. But she noticed that for people with thick and textured hair, there were few tips on best hairstyles for an EEG.

Lewis has thick, curly hair and believed that explicitly following the instructions on the preparation worksheet would make it harder, not easier, for the technician to reach her scalp. Lewis decided that her mini-twists — a protective style in which the hair is parted into small sections and twisted — would be the best way for her to show up to the appointment with clean and product-free hair that still allowed for easy access to her scalp.

Lewis felt comfortable with her plan and did not think about it again until she received a reminder email the day before her EEG and MRI appointment that restated the restrictive instructions and added a warning: Failure to comply would result in the appointment being rescheduled and a $50 same-day cancellation fee.

To avoid the penalty, Lewis emailed the facility with her concerns and attached photos.

“I got kind of worried, and I sent them pictures of my hair thinking that it would go well, and they would be, like, ‘Oh yeah, that’s fine. We see what you see,’” said Lewis.

Soon after, she received a call from the facility and was told she would not be able to get the procedure done with her hair in the twists. After the call, Lewis posted a TikTok video detailing the conversation. She expressed her frustration and felt that the person on the phone was “close-minded.”

“As a Black woman, that is so exclusionary for coarse and thick hair. To literally have no product in your hair and show up with it loose, you’re not even reaching my scalp with that,” Lewis said in her video.

The comments section on Lewis’ TikTok video is full of people sharing in her frustration and confusion or recounting similar experiences with EEG scheduling.

West 14 Street MedicalArts declined to comment for this article.

The New York medical center is not the only facility with similar EEG prep instructions. The Neurology Center, which has several locations in the Washington, D.C., area, provides EEG pretest instructions for patients reading, “Please remove any hair extensions or additions. Do not use hair treatment products such as hair spray, conditioners, or hair dressing, nor should you fix your hair in tight braids or corn rows.”

Marc Hanna, the neurophysiology supervisor at the center’s White Oak location in Silver Spring, Maryland, has more than 30 years of experience performing EEGs. He oversees 10-12 EEG technicians at the facility.

Hanna said the hair rules are meant to help a technician get an accurate reading from the test. “The electrodes need to sit flat on the scalp, and they need to be in precise spots on the scalp that are equally apart from each other,” Hanna said.

For people with thick and curly hair, this can be a challenge.

A 2020 article from Science News detailed a study that measured how much coarse, curly hair could interfere with measuring brain signals. A good EEG signal is considered to have less than 50 kilo-Ohms of impedance, but the researchers found unbraided, curly hair with standard electrodes yielded 615 kilo-Ohms.

Researchers are working to better capture brain waves of people with naturally thick and curly hair. Joy Jackson, a biomedical engineering major at the University of Miami, developed a clip-like device that can help electrodes better adhere to the scalp.

Experimentation with different braiding patterns and flexible electrode clips shaped like dragonfly wings, designed to push under the braids, has had promising results. A study, published by bioRxiv, found this method resulted in a reading well within the range for a reliable EEG measurement.

But more research has to be done before products like these are widely used by medical facilities.

Hanna said the facility where he works does not automatically ask patients to remove their protective styles because sometimes the technician can complete the test without them doing so.

“Each one of those cases are an individual case,” Hanna said. “So, at our facility, we don’t ask the patient to take all their braids out. We just ask them to come in. Sometimes, if one of the technicians are available when the patient is scheduling, they’ll just look at the hair and say, ‘OK, we can do it’ or ‘We don’t think we can do it.’ And we even might say, ‘We don’t think we can do it but come in and we’ll try.’”

In practice, Hanna said, it’s not common for hair to be an issue. But for patients whose hairstyle might make the test inaccurate, he said, it becomes a conversation between the doctor and the patient.

When Lewis arrived the following day for her MRI and EEG appointment, she was told her EEG had been canceled.

“It was just kind of baffling a little bit because, literally, as soon as I walk in, I saw about four different Black women who all had either twists, locs, braids, or something,” she said. “And on the call, the woman was saying if you come in and my hair is not loose, we’re going to charge you. And she did recommend to cancel my appointment. But I never approved that.”

After Lewis explained what happened during the phone call, she said, the receptionist was very apologetic and said the information Lewis was given was not true. Lewis said she spoke with one of the EEG technicians at the facility to confirm that her mini-twists would work for the test — and felt a sigh of relief when she saw the technician was also a Black woman.

“The technician, I think overall, they just made me feel safe,” Lewis said. “Because I felt like they could identify with me just from a cultural standpoint, a racial standpoint. So, it did make me feel a little bit more valid in my feelings.”

Lewis later returned to the facility to get the procedure done while still wearing mini-twists. This time, the process was seamless.

Her advice for other patients? “When you feel something, definitely speak out, ask questions.”

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).

Mike Lee no se arrepintió de su carrera. Había sido uno de los mejores boxeadores profesionales del mundo en su categoría. Tenía marca de 21-1, y peleó en el Madison Square Garden y frente a millones en la televisión.

Pero habían pasado más de dos años desde que pisó un ring, y cada día era un recordatorio del costo. En un momento, Lee estaba tomando ocho medicamentos recetados, todos para tratar de sobrellevar la situación.

Contó que, en su momento más bajo, en una noche en que estaba en lo más profundo de una adicción a los analgésicos, pensó en chocar su auto contra la valla de una autopista de Chicago a 140 mph.

Estaba dispuesto a hacer cualquier cosa para escapar del infierno en el que se sentía atrapado.

El impulso se desvaneció, pero el dolor permaneció.

Estaba perdido.

“Cuando tienes dolor y estás atrapado, harás cualquier cosa para salir de eso”, dijo Lee.

Ahora, había llegado a una jungla verde al final de un camino de tierra en la mitad de una montaña.

Esperaba que los hongos psicodélicos pudieran cambiar su vida.

Lee era parte de un pequeño grupo, muchos de ellos atletas retirados, que viajaron a Jamaica en marzo de 2022 para un retiro que costó hasta $5500. Cada uno de ellos había venido a Good Hope Estate, una plantación de azúcar convertida en centro turístico exclusivo, con la esperanza de librarse de la depresión, la ansiedad y el dolor crónico que habían experimentado durante años.

Dos ceremonias con hongos psicodélicos y dos sesiones de terapia les esperaban en el retiro dirigido por una empresa canadiense llamada Wake Network. Los participantes estaban nerviosos, pero también esperanzados.

Junto con Lee, había un jugador profesional de fútbol americano que estaba considerando retirarse y una ex estrella de hockey que tenía múltiples conmociones cerebrales.

Venían de todas partes de América del Norte, de diferentes orígenes y diferentes deportes, pero tenían algunas cosas en común: eran vulnerables y sentían que los medicamentos recetados les habían fallado. No sabían qué esperar, si el tratamiento funcionaría, si regresarían a casa con una solución o simplemente con otra decepción.

Lee se enteró del retiro por un amigo de la infancia que trabaja como médico en Wake. Otros habían sido reclutados por Riley Cote, un ex ejecutor de los Philadelphia Flyers y ahora un evangelista psicodélico que es asesor de Wake con una participación accionaria.

Alguna vez, Cote fue como Lee. Le encantaba golpear a la gente en la cara. Amaba la forma en que su mano aterrizaba con un ruido sordo cuando sus nudillos se conectaban con la carne y el hueso a una velocidad violenta. Romper la cabeza de alguien hacía que Cote se sintiera vivo.

“Luché contra todos. Escogía al tipo más grande que pudiera encontrar y lo desafiaba. Así fue como sobreviví, cómo me hice un nombre. Me estaba infligiendo todo este dolor e inflamación, siempre recibiendo puñetazos en la cara, y tenía que mantener este tipo de personalidad machista, como, ‘Oh, no puedes lastimarme. No puedes lastimarme’”.

Ya no era esa persona. Le daba escalofríos pensar en el hombre que alguna vez fue, alguien que bebía en exceso y usaba analgésicos para adormecer su cerebro. Hubo un tiempo en que él, como Lee, estaba en un lugar oscuro, pero con el transcurso de varios años, los hongos psicodélicos, cree Cote, lo ayudaron a regresar a la luz.

“El mundo está en una crisis, una crisis de salud mental, una crisis espiritual”, dijo Cote. “Y creo que estas son medicinas espirituales, y siento que es el camino correcto para mí. No lo considero más que mi deber, mi propósito en este planeta es compartir la verdad sobre la medicina natural”.

Durante años, han circulado rumores sobre una red clandestina de atletas, principalmente ex atletas, que usan psilocibina, el compuesto de los hongos mágicos, para tratar lesiones cerebrales traumáticas, ansiedad y depresión.

Muchos de ellos, como Cote, ven a los psicodélicos como una cura milagrosa, lo único que pudieron encontrar que podría ayudar a romper un ciclo de analgésicos y abuso de sustancias. Se reunían en pequeños grupos para ingerir hongos en privado o viajaban a países como Jamaica donde los hongos psicodélicos no están prohibidos.

Ahora, el uso de hongos psicodélicos está ganando terreno en los Estados Unidos. Varias ciudades han despenalizado la posesión de psilocibina, y los votantes de Oregon y Colorado aprobaron medidas electorales para legalizar los hongos mágicos bajo uso supervisado. Muchos investigadores predicen que la Administración de Drogas y Alimentos (FDA) aprobará un tratamiento psicodélico en los próximos cinco años.

Pero muchos de esos mismos investigadores advierten que la intensa promoción de los psicodélicos está superando a la ciencia, y que el tratamiento conlleva riesgos significativos para algunos pacientes. Temen que, a menos que la investigación se lleve a cabo de forma metódica y ética, el uso generalizado de la psilocibina podría resultar en una reacción negativa del público, como sucedió en la década de 1960, relegando un tratamiento prometedor al basurero de las sustancias prohibidas.

Están instando a las entidades corporativas como Wake, que ya se están posicionando para aprovechar la posible legalización de los psicodélicos, a que avancen lentamente, se aseguren de que la investigación se realice de la manera correcta y permitan que la ciencia se ponga al día.

“Si no haces esto de manera segura, la gente saldrá lastimada”, dijo Matthew Johnson, profesor de psiquiatría e investigador de psicodélicos en la Universidad Johns Hopkins.

Pero muchos, incluidos los ex atletas profesionales con cuerpos y cerebros maltratados, no quieren esperar el lento avance de la investigación clínica. Necesitan ayuda ahora.

Los analgésicos, los antidepresivos, las innumerables píldoras diferentes que les recetaron a lo largo de los años no han ayudado. En sus mentes, las historias de sus compañeros atletas que dicen que se han beneficiado de los psicodélicos superan cualquier incertidumbre científica.

“Cuando piensas en hongos mágicos, piensas en los hippies de Woodstock bailando al ritmo de la música”, dijo Lee. “Pensar que tienes algunos de los mejores atletas del mundo aquí que están lidiando con algunas cosas y las están tomando, te hace sentir más cómodo. Me hace sentir como, ‘Está bien, tal vez estoy haciendo lo correcto’. Es una medicina curativa; no es solo una droga de fiesta”.

***

Cote, ahora de 41 años, era un patinador de hockey decente que creció en Winnipeg, Manitoba, tenaz de punta a punta y un trabajador incansable, pero bastante promedio en el manejo del disco.

No anotó suficientes goles para ascender en el hockey junior como lo hicieron algunos prospectos. Sin embargo, a medida que crecía, a los entrenadores no les importaba tanto. Tenía hombros anchos y un largo alcance. En una era del hockey en la cual la violencia todavía era moneda corriente, había encontrado su boleto dorado para la NHL: Cote golpeaba a la gente y recibía golpes a cambio.

Como miembro de los Flyers, vio que era su deber mantener las tradiciones de los Broad Street Bullies, un grupo de jugadores de la década de 1970 que fueron celebrados por la prensa por jugar y festejar fuerte.

Se abrió camino a través de la NHL durante partes de cuatro temporadas, acumulando más de 400 minutos de penalización en su carrera y anotando solo un gol. La mayoría de sus peleas fueron situaciones brutales, bárbaras. Sus destacados muestran a un gigante corpulento, con los ojos llenos de violencia, el tipo de matón que podría romperte la mandíbula y reír como un maníaco después, la sangre goteando de su rostro y cayendo al hielo.

“Fue algo que disfruté hacer, y creo que era solo un elemento de competencia para mí”, dijo Cote. “Y probablemente también era algo que estaba haciendo por miedo: miedo de no vivir mi sueño de la infancia o de decepcionar a mis padres o a la gente”.

Dijo que se medicaba por su dolor casi todos los días con alcohol. Las cervezas eran un aperitivo de camino a los shots en la barra. Después, venían drogas duras. Él y sus compañeros de equipo se quedaban fuera hasta las 3 am, a veces más tarde, y luego intentaban sudar el veneno al día siguiente durante la práctica.

Después de unos años, su cerebro comenzó a empañarse. Se hizo más grande y más fuerte a través del levantamiento de pesas, y parecía un monstruo en el hielo, pero cada una de sus habilidades de hockey se deterioró, salvo las peleas. A medida que su carrera terminaba, dijo, se sentía como si la oscuridad se acercara sigilosamente. Se deprimió. Tenía miedo de en lo que se había convertido.

Hoy, Cote se parece poco a aquel ejecutor de los videos. Más delgado y tranquilo, imparte clases de yoga en un estudio de Delaware tres veces por semana. Con el pelo hasta los hombros, tatuajes en los brazos y el pecho, habla con una suave voz de barítono. Parece más un monje que un monstruo.

“Miro hacia atrás y tal vez solo muestra lo confundido que estaba y la realidad que estaba buscando, que supuestamente era la felicidad y la satisfacción de perseguir el sueño de mi infancia”, dijo Cote. “Pero es difícil para mí entender que estoy haciendo eso ahora, simplemente sabiendo quién soy ahora y dándome cuenta de que se necesita mucha oscuridad para hacer lo que hice”.

Cote dijo que tomó hongos de forma recreativa durante sus 20 años, pero nunca en un entorno terapéutico o con el entendimiento de que podrían ayudarlo a procesar su trauma físico y emocional. “Era solo parte de la escena o parte de la fiesta”, dijo.

Pero cuando se jubiló en 2010, sintió que estaba enfrentando una crisis de identidad. Había sido un luchador durante tanto tiempo que pensó que eso era todo lo que era. ¿Cómo podría un ejecutor fracasado criar a dos hijas?

Empezó a leer. Lo que aprendió lo sorprendió.

Los investigadores habían revivido silenciosamente el estudio sobre los hongos psicodélicos como tratamiento médico en el año 2000, y los primeros hallazgos sugirieron que la psilocibina a menudo tenía beneficios notables para las personas diagnosticadas con ansiedad y depresión. Ayudó a algunos pacientes a deshacerse de sus adicciones a las drogas o al alcohol.

Otra investigación sugirió que la psilocibina en realidad puede ser capaz de remodelar la anatomía del cerebro, restaurar las vías neurológicas y ayudar a curar lesiones cerebrales traumáticas.

Para Cote, a quien le diagnosticaron al menos tres conmociones cerebrales en su carrera de hockey y probablemente sufrió muchas más, fue transformador.

Cote ahora recluta clientes para Wake, que organiza retiros inmersivos de psilocibina fuera de los Estados Unidos.

“Algunas personas vienen a estos eventos y están al borde del suicidio”, dijo Tyler Macleod, cofundador de Wake y su director de experiencia. “No se arreglan después de una ceremonia, pero ya no están atascados en la oscuridad. Se despiertan y dicen: ‘Oh, puedo navegar de nuevo una relación con mis hijos'”.

Todos los ex atletas que asisten a estos retiros están luchando con algo, dijo Cote. Necesitan ayuda. En muchos casos, sienten que han probado todo lo demás. Les pregunta por qué tienen que esperar cuando tantos estudios y anécdotas indican resultados positivos.

“Es como con el cannabis: ¿cuántas historias tuvimos que contarnos antes de tener un programa médico?”, apuntó Cote. “Simplemente ha estado bloqueado durante tanto tiempo”.

***

En 1970, el presidente Richard Nixon promulgó la Ley de Sustancias Controladas, legislación que dividía las drogas en cinco niveles, clasificándolas en gran medida según su potencial de abuso. Los hongos mágicos se clasificaron como sustancias de la Lista 1, junto con la heroína y la marihuana, lo que significa que el gobierno creía que no tenían ningún beneficio médico y que tenían un alto potencial de generar adicción. (La cocaína, la oxicodona y la metanfetamina se clasificaron como drogas de la Lista 2).

Esas decisiones, que el asesor de Nixon, John Ehrlichman, dijo más tarde que tenían motivaciones políticas, continúan teniendo un efecto dominó en la actualidad. La investigación sobre tratamientos psicodélicos se suspendió durante 30 años.

Si bien los estudios recientes han tenido un alcance pequeño, han mostrado efectos notables. Los medicamentos recetados aprobados para afecciones como la ansiedad o la depresión ayudan, en el mejor de los casos, a entre el 40% y el 60% de los pacientes. En los primeros ensayos, los psicodélicos han alcanzado tasas de eficacia de más del 70%.

Y, a diferencia de la mayoría de los medicamentos recetados, que dejan de funcionar poco después de que los pacientes dejan de tomarlos, uno o dos tratamientos de psilocibina pueden tener efectos terapéuticos por seis meses, un año o incluso más, según un estudio de Johns Hopkins.

Con un riesgo mínimo de adicción o sobredosis y siglos de uso por parte de las culturas indígenas, muchos investigadores consideran que la psilocibina es un tratamiento innovador potencial con grandes beneficios y pocos riesgos.

Scott Aaronson, director de programas de investigación clínica en Sheppard Pratt, un hospital psiquiátrico sin fines de lucro en las afueras de Baltimore, ha estado estudiando los trastornos del estado de ánimo difíciles de tratar durante 40 años, comenzando con algunos de los primeros estudios sobre Prozac.

“Soy un ser humano cínico, escéptico y sarcástico”, dijo Aaronson. “Y te diré, nunca he visto algo así en todos mis años”.

Pero la psilocibina no está exenta de riesgos. Puede exacerbar problemas cardíacos y desencadenar esquizofrenia en personas con una predisposición genética, y la combinación de psilocibina y litio puede causar convulsiones.

Los ensayos clínicos generalmente han descartado a los pacientes en riesgo de tales complicaciones. Aún así, una parte significativa de quienes consumen psilocibina, incluso sin ninguna de esas preocupaciones, tienen una experiencia negativa.

“En una dosis alta, alrededor de un tercio de las personas en nuestros estudios, incluso en estas condiciones ideales, pueden tener lo que se llamaría un mal viaje, algún grado de ansiedad o miedo sustancial”, dijo Johnson, investigador de Johns Hopkins. “Una persona puede ser muy vulnerable psicológicamente. Puede sentirse como si estuvieran muriendo”.

Sin embargo, a veces, incluso esos “malos viajes” pueden conducir a la ayuda con la depresión u otros problemas, según han descubierto investigadores, especialmente con la ayuda de seguimiento de un terapeuta para procesar la experiencia.

Los efectos psicodélicos de la psilocibina también pueden desconectar a una persona de la realidad, lo que puede llevar a las personas a hacer cosas peligrosas, como correr hacia el tráfico o saltar por una ventana.

“La percepción misma de la realidad y de ellos mismos en la realidad, como quiénes son, estas cosas pueden cambiar profundamente y no es una buena receta para interactuar en público”, dijo Johnson.

Los investigadores también describen casos en los que la psilocibina pone a las personas con problemas psicológicos no resueltos en estado de angustia a largo plazo.

Es por eso que los investigadores insisten en que la psilocibina debe administrarse en un entorno clínico con terapeutas capacitados que puedan guiar a las personas a través de la experiencia, lidiar con los resultados negativos cuando surjan, y ayudarlas a procesar e integrar sus experiencias.

Los ensayos clínicos de psilocibina se han basado en protocolos estrictos, que incluyen una o más sesiones antes del tratamiento para ayudar a los participantes a comprender qué esperar. El consumo de los hongos se hace a menudo en un solo día, con uno o dos terapeutas disponibles.

En los días siguientes, la persona regresa para lo que se conoce como integración, generalmente una sesión de terapia individual para ayudar a procesar la experiencia y comenzar el camino hacia la curación. Algunos ensayos agregan un día adicional de terapia entre dos tratamientos.

A diferencia de un medicamento típico, nose envía a los pacientes a casa con un frasco de píldoras. Todo el protocolo se parece más a un procedimiento médico.

Pero es un error pensar que es la medicina psicodélica la que hace todo el trabajo, no la terapia que viene después, dijo Jeffrey LaPratt, psicólogo e investigador de psilocibina con Sheppard Pratt. “Es un trabajo muy duro y requiere vulnerabilidad. Se necesita coraje. Puede ser realmente doloroso”.

***

El ex jugador de la NHL Steve Downie sintió como si algo en él se hubiera roto cuando lo invitaron al retiro de Wake en Jamaica. Sus días estaban llenos de niebla. Vivía con depresión, a menudo incapaz de salir de su casa.

“Me cansé de ir a esos médicos y me cansé de hablar con ellos”, dijo Downie. “No me malinterpreten, no digo que los médicos sean malos. Solo digo que, en mi experiencia personal, lo que viví no fue positivo. Y llega un punto en el que tienes que probar algo nuevo, y es por eso que estoy aquí”.

También tuvo un trauma en su vida que nunca había enfrentado realmente. Cuando Downie tenía 8 años, su padre murió en un accidente automovilístico que lo llevó a practicar hockey. Lanzarse profundamente en el deporte fue su única forma de sobrellevar la muerte de su padre. Al igual que Cote, su compañero de equipo en los Flyers durante dos años, jugó de manera imprudente imprudente, lanzándose a colisiones violentas que lo dejaban a él y a sus oponentes ensangrentados.

Después de una carrera juvenil empañada por una controversia de novatos, Downie comenzó su primera temporada en la NHL, en 2007, con una suspensión de 20 juegos por un brutal control en las tablas en un competencia de pretemporada que envió a su oponente fuera del hielo en camilla.

Sigue siendo una de las suspensiones más largas jamás emitidas por la liga. En la prensa de hockey, fue etiquetado como un villano, un matón y un psicótico extremo. Las palabras le dolieron un poco, incluso cuando trató de reírse de ellas.

“No tengo dientes y soy pequeño, así que no pueden estar tan equivocados”, dijo Downie. “¿Bien? Al final del día, era un trabajo. Hice lo que me pidieron”.

Durante sus nueve temporadas jugando para cinco equipos de la NHL, sufrió más conmociones cerebrales de las que podía recordar. Sordo de un oído, al borde de las lágrimas todos los días y bastante seguro de que estaba bebiendo demasiado, Downie, que ahora tiene 36 años, se miraba en el espejo algunos días y se preguntaba si estaría muerto en seis meses.

No sabía nada sobre psicodélicos, solo que Cote le había dicho que lo ayudaría cuando Downie estuviera listo.

“Llamé a Riley y le dije: ‘Necesito algo, hombre’. Me cansé de ir a los médicos y hablar con ellos”, dijo Downie. “Muchas de las pastillas que te dan, te comen el cerebro. Realmente no te ayudan”.

Justin Renfrow, un jugador de línea de 33 años que jugó en la NFL y en Canadá, llegó en busca de claridad. Estaba considerando retirarse del fútbol profesional, algo que lo asustaba y lo emocionaba. Había estado jugando durante la mitad de su vida, y el juego era una gran parte de su identidad. Fue la última conexión que tuvo con su abuela, una de las personas más importantes de su vida. Ella fue la que iba a los viajes de reclutamiento con él. Después de su muerte en 2021, Renfrow sintió que una parte de ella todavía estaba con él mientras jugara.

Pero después de una década de jugar profesionalmente, el cuerpo de Renfrow estaba maltratado. Le dolía una de las rodillas. Había llegado a odiar las drogas farmacéuticas. Dijo que los médicos del equipo le habían recetado tantos medicamentos diferentes, incluidos los que cubren el estómago y los bloqueadores de los nervios para que pudiera tomar más analgésicos, que su cuerpo comenzó a experimentar terribles efectos secundarios.

Dijo que una vez tuvo una reacción tan mala a una combinación de analgésicos que le habían dado que necesitó atención médica después de sudar a través de su ropa y tener problemas para respirar.

“Es solo, ‘Necesitamos llegar a los playoffs, así que toma esto'”, dijo Renfrow. “Lanzó mi cuerpo en picada”.

Había usado hongos psicodélicos en numerosas ocasiones, principalmente como una forma de lidiar con el dolor provocado por el fútbol americano, pero nunca los había usado como parte de una ceremonia o para meditar. En este viaje, buscó claridad. ¿Era hora de alejarse del fútbol? Le apasionaba la cocina y estaba pensando en iniciar su propio programa en YouTube. Tal vez era hora de cambiar su enfoque y dejar que el fútbol se desvaneciera.

“Tengo muchas personas que dependen de mí todos los días”, dijo Renfrow.

Los atletas esperaban que la ceremonia los ayudara a obtener respuestas.

La investigación sobre psicodélicos es prometedora y emocionante, pero la efectividad de los hongos como tratamiento no está del todo establecida. Pero incluso si la psilocibina y otros psicodélicos resultan ser nada más que un placebo, lo que algunos investigadores dicen que es posible, muchos atletas juran que están encontrando un alivio real de la ansiedad, la depresión y otros traumas persistentes de sus días de juego.

Con un mercado global potencial multimillonario, también hay un gran incentivo financiero. Wake es solo una de un número creciente de nuevas empresas con fines de lucro respaldadas por dinero de inversión privada que buscan una parte del tratamiento psicodélico.

Eventualmente, ellos y otros esperan abrir centros de tratamiento o vender las drogas en los Estados Unidos y Canadá. En Canadá, la producción, venta o posesión de hongos psicodélicos son ilegales.

Durante el retiro de Jamaica, los líderes de Wake dieron una presentación a los participantes sobre cómo podrían invertir en la empresa.

Macleod dijo que se interesó en la terapia psicodélica no como una oportunidad comercial, sino después de que perdió a su hermana, Heather, hace seis años por suicidio.

Perderla lo llevó a buscar respuestas. Su hermana había sido esquiadora competitiva en Canadá, pero una serie de caídas le provocaron múltiples conmociones cerebrales y durante su vida adulta tuvo ansiedad y depresión. La medicina tradicional le falló repetidamente, dijo Macleod. Cada semana, se encuentra deseando haber sabido lo que sabe ahora y haberlo usado para intentar salvarla.

“No puedo decirte cuántas personas vienen a mí que están luchando como mi hermana”, dijo. “Dios, desearía que ella pudiera estar aquí. Sé que ella nos estaría animando. La veo a veces mirándonos desde arriba y diciendo: ‘Ayuda a otras personas que estaban atrapadas donde yo estaba'”.

Ansiosas por llevar los tratamientos psicodélicos a los consumidores, las empresas corporativas a menudo extrapolan los resultados de la investigación de ensayos clínicos estrictamente controlados con pacientes cuidadosamente seleccionados para promover un uso más amplio por parte de la población general en casi cualquier entorno.

“La presión por los psicodélicos generalmente está siendo impulsada por personas que quieren ganar dinero, mucho más que por científicos”, dijo Kevin Sabet, ex asesor principal de la Oficina de Política Nacional de Control de Drogas de la Casa Blanca, y ahora presidente y director ejecutivo de Smart Approaches to Marijuana, un grupo político que se opone a la legalización de la marihuana.

“¿Por qué dejaríamos que los inversionistas de Wall Street, que son realmente los que están aquí tratando de ganar dinero, lideren la conversación?”, agregó.

La comercialización podría ser tanto buena como mala para los psicodélicos. Por un lado, podría proporcionar financiación para la investigación; por otro, el deseo de rentabilizar esa inversión podría influir indebidamente en los resultados y poner en riesgo a los pacientes.

“Tu modelo de negocio no va a funcionar bien cuando alguien salta por la ventana y aparece en la portada de The New York Times”, dijo Johnson, el investigador de Johns Hopkins.

La investigación clínica también debe superar la imagen del hongo como una droga de fiesta, algo que los hippies comparten en bolsas de plástico en las últimas filas de los conciertos.

Para cambiar esa narrativa, dicen Wake y otras compañías, se están inclinando mucho hacia la ciencia. Esto no es una búsqueda de emociones, dicen, sino una medicina legítima que trata condiciones psiquiátricas reales.

Es el mismo argumento que hicieron los defensores de la legalización de la marihuana, ya sea que lo creyeran o lo estuvieran usando como un medio para un fin: presionar para legalizar el cannabis como medicina antes de abrir las puertas al uso recreativo sin restricciones.

Los líderes de Wake, como la mayoría de los ejecutivos en el universo psicodélico, han dicho que están comprometidos a ayudar en la investigación para demostrar a los reguladores federales que la psilocibina es segura y efectiva. Las muestras de sangre y saliva que recolectó un médico en el retiro de Wake, dijeron, se usarían para identificar marcadores genéticos que podrían predecir quién responderá al tratamiento con psilocibina.

El equipo de Wake hizo que los participantes usaran un casco que contenía tecnología de imágenes experimentales que se había utilizado en ensayos clínicos para rastrear la actividad cerebral antes, durante y después de las experiencias psicodélicas. Como parte de la investigación, los participantes usaron el casco mientras jugaban juegos de palabras.

Muchos investigadores académicos se preguntan si algunas empresas simplemente están aplicando un barniz de ciencia a un esfuerzo por hacer dinero, lo que muchos escépticos denominan “teatro placebo”.

De hecho, Aaronson teme que el campo pronto pueda estar “lleno de vendedores ambulantes”.

“El problema que tienes es que, como era de esperar, las redes sociales y las comunicaciones funcionan mucho más rápido que la ciencia”, dijo. “Entonces, todos están tratando de tener en sus manos estas cosas porque creen que será increíble”.

Aaronson ha diseñado protocolos de ensayos clínicos para Compass Pathways, una empresa competidora con fines de lucro que busca comercializar tratamientos con psilocibina, y ha rechazado a otras empresas que buscan crear una huella en el espacio psicodélico. (Aaronson recibe fondos de Compass para respaldar su investigación, pero dijo que no tiene ningún interés financiero directo en la empresa).

“Me preocupa quién respalda el juego de algunas de estas compañías y trato de averiguar qué es lo que realmente busca alguien”, dijo. “Hablas con la gente y ves si hay un plan real para investigar o si hay un plan real para vender algo”.

***

Un murmullo de tensión nerviosa perduraba en el aire mientras los atletas se preparaban para la ceremonia. En el desayuno, no hubo muchas conversaciones triviales. Los asistentes se arremolinaron y se registraron con el personal médico de Wake para ofrecer sus muestras de sangre y saliva. Algunos participaron en una clase de yoga en un estudio al aire libre con vista a la jungla.

Wake había contratado a una chamán jamaicana, una mujer llamada Sherece Cowan, una empresaria de comida vegana que fue finalista de Miss Universe Jamaica 2012, para dirigir a los atletas en la ceremonia. Pidió que la llamaran Sita y se refirió a sí misma como facilitadora de medicina natural.

Habló lenta y deliberadamente, agitando el humo de una urna mientras instaba a los participantes a reunirse en círculo en el césped de la finca. Después de beber una dosis de 3 a 5 gramos de psilocibina, que había sido molida en polvo y mezclada con jugo de naranja, los atletas cayeron en un estado de sueño durante las próximas cuatro a seis horas.

“Espero que obtengas todo lo que necesitas. Puede que no sea todo lo que estás pidiendo, pero espero que recibas todo lo que necesitas”, dijo Cowan. “Bendiciones en tu viaje”.

Un músico local comenzó a tocar, sus tambores y campanas pretendían realzar el viaje. La mayoría de los atletas yacían sobre colchonetas, como si durmieran. Cote se sentó en una pose de yoga. Nick Murray, director ejecutivo de Wake, le había pedido a Cote que usara un casco especial, un dispositivo de electroencefalografía más pequeño que el otro casco, para medir su actividad cerebral.

Excepto por los tambores y las campanas del músico, todo estaba en silencio. De vez en cuando, el viento agitaba las hojas de los árboles en el límite de la propiedad, pero durante las siguientes seis horas, dentro del círculo, el tiempo casi se detuvo.

Dos horas después de la ceremonia, después de que el psicodélico había hecho efecto, lo que estaba ocurriendo pasaba dentro de las cabezas de los atletas. Cote, sorprendentemente, seguía manteniendo su postura de yoga.

El silencio se rompió cuando Renfrow se levantó de su estera después de tres horas. Llevaba una sudadera en la ceremonia con sus iniciales, JR, estampadas en el pecho. Se quitó la camisa de su cuerpo con frustración y la arrojó a un lado.

Las lágrimas se derramaron por su rostro.

Cuando la ceremonia terminó, los atletas comenzaron a sentarse y algunos charlaron en voz baja.

La mayoría no estaba seguro de cómo describir la experiencia. Para algunos, se sintió como un descenso a los rincones de la mente, con colores y emociones mezclándose. Otros dijeron que enfrentaron traumas que pensaron que habían enterrado o emociones que querían reprimir. Dijeron sentir una conexión con las otras personas en el círculo.

“Es el último asesino del ego porque, al menos para mí, te da una empatía increíble que nunca antes habías sentido”, dijo Lee. “Cuando estás haciendo un viaje con otras personas, te ves a tí mismo en ellos. Es casi como si estuvieras caminando frente a un espejo, diferentes espejos. Ves partes de tí mismo en todos y te das cuenta de que todos estamos conectados y todos estamos pasando por algo, todos tenemos algún tipo de dolor, y eso te vuelve humilde”.

La mayoría de los atletas se quedaron solos para poder anotar sus pensamientos en un diario, siguiendo las instrucciones del personal de Wake. Habría una sesión de terapia comunitaria a la mañana siguiente.

A cada uno se le pediría que compartiera algo de su viaje.

***

Al final, la mayoría de los curiosos sobre la psilocibina simplemente quieren saber: ¿Funciona? Y, ¿cómo funciona? Los científicos dicen que esas son preguntas difíciles de responder en este momento.

Investigadores han descubierto que los psicodélicos clásicos, como la psilocibina y el LSD, actúan sobre el receptor de serotonina 2A, el mismo receptor al que se apuntan los antidepresivos más comunes del mercado. Pero más allá de eso, la comprensión de cómo funcionan para ayudar a las personas es, en este punto, más teoría o conjetura que hecho científico.

Johnson, el investigador de Johns Hopkins, dijo que la psilocibina ayuda a aumentar la apertura en las personas, permitiéndoles salir de su visión de quiénes son. Alguien que se resigna a ser un fumador que no puede dejar de fumar o una persona con depresión que no puede encontrar la felicidad puede, bajo la influencia de los psicodélicos, verse a sí mismo de una manera diferente, explicó.

“Una vez que están fuera de la trampa mental, se vuelve tan obvio para las personas con estos diferentes trastornos que, ‘¿Sabes qué? Puedo simplemente decidir dejar de fumar. Puedo dejar de lado mi tristeza’”, dijo Johnson.

Estudios con ratas muestran que los psicodélicos también parecen aumentar la conectividad neuronal en el cerebro, incluso después de una sola dosis. Eso podría ayudar al cerebro a recuperarse de lesiones traumáticas o conmociones cerebrales, encontrando nuevos caminos alrededor de las áreas dañadas.

La teoría predominante de cómo la psilocibina y otros psicodélicos podrían ayudar a tratar la salud mental es que reprimen la actividad en la red de modo predeterminado del cerebro. Es un conjunto de regiones del cerebro que se activan cuando las personas reflexionan sobre algo, y una de las pocas partes que está hiperactiva en las personas con depresión.

A menudo revisan los errores que cometieron una y otra vez o se castigan continuamente por ellos, dijo LaPratt, el investigador de Sheppard Pratt. Esa hiperactividad en la red de modo predeterminado conduce a patrones repetitivos de pensamientos negativos. ¿Qué me pasa? ¿Por qué soy tan infeliz? De los cuales la persona no puede escapar.

Las personas con depresión suelen reflexionar sobre el pasado; personas con ansiedad, sobre el futuro.

“Es posible que surja algo y luego el cerebro comience a pensar, y nuevamente, como ese disco rayado”, dijo LaPratt. “Puede ser muy fácil comenzar a pensar en cómo todo podría salir mal y comenzar a dramatizar”.

Ese pensamiento repetitivo también prevalece en personas con otras afecciones, incluido el trastorno obsesivo compulsivo y el trastorno por estrés postraumático. Comienza a afectar el sentido de quiénes son; se definen a sí mismos por su condición.

Pero los psicodélicos parecen ayudar a las personas a examinar viejos traumas sin volver a caer en el mismo ciclo destructivo. Pueden ayudar a las personas a sentirse más conectadas con los demás. La depresión y la ansiedad no se borran simplemente, dijo LaPratt, sino que las personas pueden obtener una nueva perspectiva de sus problemas y comenzar a sentir, tal vez por primera vez, que pueden deshacerse de ellos.

“Vemos una mayor apertura y cierta motivación para cambiar los comportamientos”, dijo.

La mayoría de los psicodélicos están fuera del sistema de una persona a la mañana siguiente, pero, según los investigadores, esa mayor apertura puede durar semanas o meses sin dosis adicionales, lo que brinda una ventana durante la cual pueden comenzar a abordar sus problemas.

“Quizás estemos ayudando a las personas a llegar al punto de poder aceptar las cosas que no pueden cambiar y cambiar las cosas que sí pueden”, dijo Aaronson, haciéndose eco de la Oración de la serenidad, que a menudo se usa en los ejercicios de 12 pasos de los programas de recuperación. “Se les quita autonomía personal a las personas con depresión. No sienten que puedan operar en su mejor interés. Se ven atrapados en un conflicto interno. Y creo que esto les ayuda a ir más allá de eso”.

Por la mañana, los atletas se reunieron en un patio para una forma de terapia de grupo llamada integración. Estaba previsto que durara al menos dos horas. Macleod explicó que era una parte esencial para comprender el viaje de la psilocibina. Todos los asistentes tuvieron la oportunidad de compartir algo de su experiencia, ya fuera esclarecedor, confuso, edificante o una mezcla de muchas emociones.

Lee habló sobre su ansiedad, sobre tratar de entender cuál sería su identidad ahora que no era boxeador. Al alejarse del ring, temía estar decepcionando a todas las personas que lo apoyaron cuando eligió una carrera de boxeo en lugar de un trabajo en finanzas después de graduarse de Notre Dame.

Pero ahora había llegado a comprender que esas eran sus propias inseguridades. Podía seguir su propio camino. Podría ayudar a las personas que experimentan un dolor físico y emocional similar.

Renfrow respiró hondo varias veces mientras buscaba las palabras. Durante la mayor parte de su vida, se había visto a sí mismo como un jugador de fútbol americano. Pero en su viaje de psilocibina, sintió como si los miembros de su familia le dijeran que estaba bien dejarlo ir. Cuando se puso de pie durante la ceremonia y se quitó la camisa con sus iniciales, dijo que, simbólicamente, estaba soltando algo.

“Está bien dejar de perseguir el viaje del fútbol”, dijo Renfrow. “No voy a vestirme bien este año y eso está bien para mí. Seré capaz de resolverlo.

Al decir adiós al fútbol, dijo, se estaba despidiendo de su abuela.

“El fútbol era ella”, dijo Renfrow, y comenzó a llorar. “Fuimos a todos mis viajes de reclutamiento. Así que tuve que dejarla ir dejando ir al fútbol. Y ese fue un gran momento cuando me puse de pie. Tuve que dejarla ir. Así que fue difícil, pero tenía que hacerlo”.

Cuando fue el turno de Downie, trató de calmar la tensión bromeando, diciendo que era hora de ir a comer. No quería abrirse al grupo, dijo. Había escrito algunas notas en una hoja de papel. Sus manos temblaban mientras trataba de leerlas.

“No estaba bebiendo y no estaba consumiendo drogas por diversión”, dijo Downie con voz temblorosa. “Estaba adormeciendo mi cerebro porque estaba jodido. No pude salir de mi camino de entrada durante un año. Me senté en cuartos oscuros y recurrí a las drogas y el alcohol”.

Pero dijo que en el viaje psicodélico pudo conectarse con su pasado. “Estoy sentado allí y estoy repasando mi cerebro, estoy hablando con mi papá, estoy hablando con los miembros de mi familia. He pedido perdón a todos los que podría pedir perdón”, dijo. “Me hizo llorar. Me hizo sentir bien”.

Se dio cuenta, a través del viaje, que quería ser un mejor hombre. Su voz temblaba mientras trataba de pronunciar las palabras.

“Al final de todo esto, creo que lo que he aprendido es cómo controlar lo que sucede. yo tengo el control. Puedo controlar esto”, dijo. “Me iré a casa y me identificaré y ejecutaré y seré un mejor padre y me quedaré para mis hijos, lidiaré con mis conmociones cerebrales lo mejor que pueda”.

Se giró para mirar directamente a Cote, las lágrimas corrían por sus mejillas detrás de sus gafas de sol.

“Quiero decir esto, hermano, cuando digo que me salvaste la vida”.

Cuando las palabras de Downie dieron paso al silencio, Lee se levantó de su silla. Cruzó el círculo, se acercó a Downie y abrió los brazos. Los dos luchadores, que llegaron a Jamaica tristes y destrozados, se abrazaron.

***

Si bien los estudios han encontrado que la psilocibina junto con la terapia es más efectiva que la terapia sola, no está claro si la psilocibina sola, sin el trabajo preparatorio o la integración posterior, tiene algún efecto.

“Hay una razón por la cual las personas que van a raves y toman psilocibina no se curan”, dijo Aaronson. “La psilocibina no es un antidepresivo”.

Incluso dentro de los estrictos protocolos de ensayos clínicos, la pregunta sigue siendo si la terapia asistida por psilocibina funciona. Los estudios preliminares han sido prometedores, pero el número de sujetos de prueba ha sido pequeño. Se necesitan estudios mucho más amplios para determinar tanto la seguridad como la eficacia.

Aún así, eso no ha impedido que los defensores de la psilocibina promocionen la investigación hasta la fecha, lo que implica que es más definitiva de lo que es. Además, muchos evangelistas de los hongos atribuyen los efectos positivos de los ensayos clínicos al consumo de psilocibina en general, descartando los protocolos utilizados en los estudios.

En el retiro de Wake en Jamaica, por ejemplo, los atletas tomaron psilocibina en ceremonias grupales guiadas por Cowan, la chamán local, mientras que las sesiones de integración grupal fueron dirigidas por un médico osteópata. Ninguno de los dos era un psicoterapeuta autorizado, dijo Murray. No está claro si los beneficios de la terapia con psilocibina sugeridos por la investigación clínica se aplicarían a un entorno grupal, para la dosificación o la integración.

Murray, director ejecutivo de Wake, dijo que si bien la investigación clínica se esfuerza por eliminar cualquier variable, como las interacciones entre los participantes, los líderes de Wake sienten que el entorno grupal ofrece beneficios a sus clientes.

“Es ese grupo que siente que, ‘Estamos juntos en esto. Mi divorcio es como tu divorcio. Perdí a un hermano’”, dijo. “Eso es difícil de poner en un ensayo clínico”.

Wake se había registrado para realizar un ensayo clínico en Jamaica, pero Murray dijo que la compañía finalmente decidió no continuar, centrándose, en cambio, en ofrecer tratamiento.

Aún así, Murray dijo que Wake está contribuyendo a la investigación científica: recolectaron muestras de sangre y saliva, y se les pidió a los participantes que completaran cuestionarios antes y después del retiro para ayudar a evaluar si el tratamiento había funcionado.

Murray dijo que Wake usa los mismos cuestionarios validados clínicamente que se usan en el consultorio de un psiquiatra.

“Entonces, no es teatro. Estas son las herramientas reales que se utilizan”, dijo. Sin embargo, sería difícil con el enfoque de Wake analizar si los hongos y la integración ayudaron a los participantes u otras influencias, como estar de vacaciones en Jamaica, estar entre un grupo de compañeros de apoyo o la marihuana que muchos de ellos fumaban regularmente durante el retiro.

“Al menos tienes que escuchar y tomarlo en serio. Hay anécdotas de personas que dicen que se habrían suicidado”, dijo Johnson. “A veces ves solo la experiencia de ‘full monty’, donde esta persona está allí en una trayectoria oscura, oscura y toda su vida cambia. Sospecho que esto es real. Algo está pasando con estos atletas que hacen estos informes”.

Las anécdotas brillantes, particularmente cuando provienen de atletas o celebridades de alto perfil, tienen peso entre el público y ayudan a impulsar medidas como las de Oregon y Colorado que están estableciendo vías para el tratamiento con psilocibina, independientemente de lo que piensen los investigadores o los reguladores.

“Cuando las personas están molestas y no satisfacemos sus necesidades, van a probar cosas”, dijo Atheir Abbas, profesor asistente de neurociencia del comportamiento en la Oregon Health & Science University. “Con suerte, los científicos pueden ponerse al día para comprender por qué las personas piensan que esto es realmente útil. Y tal vez sea útil, pero tratemos de averiguar si lo es y cómo”.

Pero existe el peligro de tomar estas historias, sin importar cuán convincentes sean, y extrapolar su seguridad o eficacia.

“La parte difícil es que el plural de anécdota no son datos”, dijo Sabet, el CEO de Smart Approaches to Marijuana. “Y los datos aún no están allí”.

***

Un año después del retiro, Downie, Renfrow y Lee dijeron que creían que su viaje con la psilocibina los había ayudado. No solucionó mágicamente todos sus problemas, pero cada uno lo consideró una experiencia positiva.

Downie ya no siente que está atrapado en un lugar oscuro. Dijo que cuando regresó a Ontario, su familia notó una diferencia de inmediato.

“Ese viaje me dio mucha claridad”, dijo Downie. “Te da direcciones. Te da respuestas internamente. Es algo único que experimenté. Mi año fue definitivamente mejor que el año anterior, eso es seguro… ¿Creo que podría ayudar a otras personas? Yo diría que sí. ¿Me ayudó? Absolutamente”.

Sin sentirse más como un prisionero en su casa, Downie comenzó un campamento de motos de nieve que lleva a los adultos en aventuras guiadas por Moosonee, cerca de James Bay. Es algo que solía hacer con su familia antes de que despegara su carrera en el hockey.

“No es mucho de lo que presumir, pero es lo más al norte al que puedes ir en una moto de nieve en Ontario”, dijo Downie. “Vienen muchos adultos de todas partes. Es una experiencia genial. Siempre ha sido una de mis pasiones”.

Todavía tiene problemas persistentes por sus conmociones cerebrales y sospecha que siempre los tendrá.

“Es lo que es”, dijo. “¿Diría que está mejorando? Es un proceso”.

El resultado más positivo ha sido la alegría que ha encontrado en ser padre.

“Mi pequeño está empezando a enamorarse del hockey, que es algo que he estado esperando”, dijo Downie.

Aunque Downie no ha realizado otro viaje con psilocibina, dijo que estaría abierto a hacerlo.

Renfrow salió de la ceremonia con la intención de retirarse del fútbol profesional, pero tres meses después volvió a firmar con Edmonton Elks de la Canadian Football League. Este año, se unió a los Jacksonville Sharks de la National Arena League, en parte para estar más cerca de su hijo.

“En ese momento, pensé que iba a dejar el fútbol”, dijo.

Pero se siente cómodo donde está y dice que está cumpliendo sus objetivos, incluido presentar ese programa de cocina en YouTube que esperaba hacer. Y dijo que se está divirtiendo de nuevo. Ahora recurre a los hongos cada vez que tiene que tomar una gran decisión.

“Creo de todo corazón en eso y en todo el tipo de orientación que me ha dado”, dijo. “No podrías pedir algo mejor, haber seguido la guía de un viaje con hongos”.

Lee se mudó de California a Austin, Texas, y ahora dirige un negocio de CBD con su hermana. Encontrar su identidad posterior al boxeo sigue siendo un proceso. En sus viajes psicodélicos en el retiro de Wake, dijo Lee, nunca pensó en deportes o boxeo. Sus visiones eran todas sobre la familia, Dios, el universo.

“Simplemente me hace darme cuenta de la importancia que le estoy dando a algo que a mi subconsciente ni siquiera le importa”, dijo. “A mi subconsciente no le importa que sea boxeador, que fui luchador e hice esto y aquello. Es todo tipo de ego”.

La experiencia, dijo, lo ayudó a comprender cuán poderosa puede ser la mente, que puede ser un amigo o un enemigo.

“Salí de eso dándome cuenta de que tengo todas las herramientas para curarme a mí mismo”, dijo. “Eso es enorme. Porque, especialmente para los muchachos que han tenido conmociones cerebrales o atletas o lo que sea, te sientes un poco aislado, te sientes solo, te sientes sin esperanza. Así que te da un sentido de esperanza”.

Le permitió ir más allá de la necesidad de probarse a sí mismo, en el ring o fuera de él, para dejar de medir su valor por sus logros. Se ha obsesionado con actividades mucho más tranquilas y no violentas: el surf y el pickleball.

“Puedo apagar mi cerebro como en el boxeo”, dijo. “Pero al mismo tiempo, es más fácil para mi cuerpo y simplemente, no sé, más satisfactorio. No tengo que probar nada”.

El viaje a Jamaica le está permitiendo salir adelante, hacer el trabajo necesario para sanar.

“Una parte de mí entró con la esperanza de que todos mis problemas se resolvieran, pero poner esas expectativas puede ser difícil”, dijo. “¿Estoy curado? No. ¿Pero realmente ayudó? ¿Y fue como una de las experiencias más profundas de mi vida?

“Yo diría que sí”.

Este artículo fue producido y escrito por Markian Hawryluk de KFF Health News y Kevin Van Valkenburg de ESPN. El investigador John Mastroberardino colaboró con la historia.

Si tu mismo o alguien que conoces puede estar experimentando una crisis de salud mental, llama o envía un mensaje de texto a la Línea de vida de crisis y suicidio al 988 o a la Línea de texto de crisis enviando un mensaje de texto con “HOME” al 741741. En Canadá, llama a Talk Suicide Canada al 1-833- 456-4566 o envía un mensaje de texto al 45645 de 4 pm a medianoche ET.

[Nota del editor: como parte del reportaje de este artículo, algunos miembros del equipo de reporteros de ESPN, bajo la guía del personal de Wake Network, usaron psilocibina. Wake Network fue compensado, pero no por ESPN.]

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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WAKEFIELD, Jamaica — The boxer felt broken. Every day, he was waking up in pain. Some days, it was debilitating headaches. Other times, it was his back. Or his fists. His ribs. His nose. On top of that, he had mood swings. Depression. Anxiety.

Mike Lee didn’t regret his career. He had been one of the best professional fighters in the world in his weight class. He’d gone 21-1 professionally and fought in Madison Square Garden and in front of millions on TV.

But it had been more than two years since he’d been inside a ring, and every day was a reminder of the cost. At one point, Lee was taking eight prescription medications, all of them trying to help him cope. In his lowest moment, on a night when he was in the depths of an addiction to painkillers, he said, he contemplated driving his car into the median of a Chicago freeway at 140 mph. He was willing to do anything to escape the hell he felt trapped in.

The impulse faded, but the pain remained.

He was lost.

“When you’re in pain and you’re stuck in a corner, you’ll do anything to get out of it,” Lee said.

Now, he had come to a verdant jungle at the end of a dirt road halfway up a mountain.

Psychedelic mushrooms, he hoped, could change his life.

Lee was part of a small group — many of them retired athletes — who’d traveled to Jamaica in March 2022 for a retreat costing as much as $5,500. They each had come to the Good Hope Estate, a sugar plantation turned exclusive resort, hoping to rid themselves of depression, anxiety, and chronic pain they had experienced for years.

Two psychedelic mushroom ceremonies and two therapy sessions awaited them at the retreat run by a Canadian company called Wake Network. The participants were nervous, but also hopeful.

Along with Lee, there was a professional football player considering retirement and a former hockey star who had multiple concussions. They’d come from all over North America, from different backgrounds and different sports, but they had a few things in common: They were vulnerable, and they felt that prescription medications had failed them. They didn’t know what to expect, whether the treatment would work, whether they’d return home with a solution or just more disappointment.

Lee had learned about the retreat from a childhood friend who works as a doctor for Wake. Others had been recruited by Riley Cote, a former enforcer with the Philadelphia Flyers and now a psychedelics evangelist who is an adviser to Wake with an equity stake.

Cote was once just like Lee. He used to love punching people in the face. He loved the way his hand landed with a thud when his knuckles connected with flesh and bone at a violent speed. Snapping someone’s head back made Cote feel alive.

“I fought everyone and their brother in my career,” Cote said. “I would pick out the biggest guy I could find and challenge him. It was how I survived, how I made a name for myself. I was inflicting all this pain and inflammation on myself, always getting punched in the face, and I had to keep up with this macho type of personality, like, ‘Oh, you can’t hurt me. You can’t hurt me.’”

He was no longer that person. It made him cringe to think about the man he once was, someone who drank excessively and used painkillers to numb his brain. There was a time when he, like Lee, was in a dark place, but over the course of several years, psychedelic mushrooms, Cote believes, helped bring him back into the light.

“The world is in a crisis, a mental health crisis, a spiritual crisis,” Cote said. “And I think these are spiritual medicines, and I just feel like it’s the right path for me. I don’t think of it as anything more than my duty, my purpose on this planet is to be sharing the truth around natural medicine.”

For years, whispers have circulated about an underground network of athletes — primarily ex-athletes — using psilocybin, the compound in magic mushrooms, to treat traumatic brain injuries, anxiety, and depression. Many of them, like Cote, view psychedelics as a miracle cure, the one thing they’d been able to find that could help break a cycle of pharmaceutical painkillers and substance abuse. They gathered in small groups to ingest mushrooms in private or traveled to countries such as Jamaica where psychedelic mushrooms aren’t prohibited.

Now the use of psychedelic mushrooms is gaining traction in the United States. A number of cities have decriminalized possession of psilocybin, and Oregon and Colorado voters passed ballot measures to legalize magic mushrooms under supervised use. Many researchers predict FDA approval of a psychedelic treatment will come within the next five years.

But many of those same researchers warn the hype over psychedelics is outpacing the science — and that the treatment comes with significant risks for some patients. They fear that, unless research is conducted methodically and ethically, widespread use of psilocybin could result in a public backlash, as it did in the 1960s, relegating a promising treatment to the dustheap of banned substances.

They are urging corporate entities like Wake, which are already positioning themselves to take advantage of the potential legalization of psychedelics, to go slowly, ensure the research is done the right way, and allow the science to catch up.

“If you don’t do this safely, people are going to get hurt,” said Matthew Johnson, a psychiatry professor and psychedelics researcher at Johns Hopkins University.

But many — including former pro athletes with battered bodies and brains — don’t want to wait for the slow grind of clinical research. They need help now. The painkillers, the antidepressants, the countless different pills they were prescribed over the years haven’t helped. In their minds, the stories told by fellow athletes who say they have benefited from psychedelics outweigh any scientific uncertainty.

“When you think of magic mushrooms, you think of hippies at Woodstock dancing around to music,” Lee said. “To think about you’ve got some of the best athletes in the world here that are dealing with some stuff and they’re taking it, it makes you feel more comfortable. It makes me feel like, ‘OK, maybe I’m doing the right thing.’ It’s a healing medicine; it’s not just a party drug.”

***

Cote, now 41, was a decent hockey skater growing up in Winnipeg, Manitoba, tenacious as hell from end to end and a tireless worker, but fairly average at handling the puck. He didn’t score enough goals to rise through junior hockey the way some prospects did. Yet as he got older, coaches didn’t mind as much. He had broad shoulders and a long reach. In an era of hockey where violence was still currency, he had found his golden ticket to the NHL: Cote would beat on people and get beat on in return. As a member of the Flyers, he saw it as his duty to uphold the traditions of the Broad Street Bullies, a group of players from the 1970s who were celebrated by the press for playing — and partying — hard.

He fought his way through the NHL for portions of four seasons, accumulating more than 400 career penalty minutes while scoring just one goal. Most of his fights were brutal, barbaric affairs. His highlight reel shows a hulking giant, his eyes filled with violence, the kind of goon who could break your jaw and laugh maniacally in the aftermath, blood dripping from his face down onto the ice.

“It was something I enjoyed doing, and I think it was just an element of competition for me,” Cote said. “And it was also probably something I was doing out of fear — fear of not living my childhood dream or letting my parents down or people down.”

He said he medicated his pain nearly every day with booze. Beers were an appetizer on the way to doing shots at the bar. Shots often led to harder drugs. He and his teammates would stay out until 3 a.m., sometimes later, then try to sweat out the poison the next day during practice.

After a few years, his brain started to fog. He got bigger and stronger through weightlifting, and he looked like a monster on the ice, but every hockey skill except his fighting deteriorated. As his career wound down, he said, it felt as if darkness was creeping in. He grew depressed. He was afraid of what he’d become.

Today, Cote bears little resemblance to that enforcer in the videos. Thinner and calmer, he teaches yoga classes in a Delaware studio three times a week. With shoulder-length hair, tattoos on his arms and chest, he speaks with a soft baritone voice. He seems more monk than monster.

“I look back and it just shows maybe how confused I was and what reality I was seeking, which was supposedly happiness and fulfillment within chasing my childhood dream,” Cote said. “But it’s hard for me to wrap my head around me doing that now, just knowing who I am now, and realizing it takes a lot of darkness to do what I did.”

Cote said he took mushrooms recreationally throughout his 20s, but never in a therapeutic setting or with the understanding they might help him process both his physical and emotional trauma. “It was just part of the scene or part of the party,” he said.

But when he retired in 2010, he felt like he was facing an identity crisis. He had been a fighter for so long, he thought that’s all he was. How could a washed-up enforcer raise two daughters?

He started reading. What he learned shocked him.

Researchers had quietly revived the study of psychedelics as a medical treatment in 2000, and early findings suggested psilocybin often had noticeable benefits for people diagnosed with anxiety and depression. It helped some patients shed their addictions to drugs or alcohol. Other research suggested that psilocybin may actually be capable of reshaping the anatomy of the brain, restoring neuropathways, and helping heal traumatic brain injuries.

For Cote, who was diagnosed with at least three concussions in his hockey career and probably incurred many more, it was transformative.

Cote now recruits clients for Wake, which hosts immersive psilocybin retreats outside the U.S.

“Some people come to these events and they’re borderline suicidal,” said Tyler Macleod, a Wake co-founder and its chief experience officer. “They’re not fixed after one ceremony, but they’re not stuck in the dark anymore. They wake up and they’re like, ‘Oh, I can navigate a relationship with my kids again.’”

The ex-athletes who attend these retreats are all struggling with something, Cote said. They need help. In many cases, they feel as if they have tried everything else. He asks why they need to wait when so many studies and anecdotes indicate positive results?

“It’s like with cannabis: How many stories did we have to be told before we had a medical program?” Cote said. “It’s just been roadblocked for so long.”

***

In 1970, President Richard Nixon signed into law the Controlled Substances Act, legislation that divided drugs into five levels, ranking them based largely on their potential for abuse. Magic mushrooms were categorized as Schedule 1 substances, alongside heroin and marijuana, meaning the government believed they had no medical benefit as well as high potential for abuse. (Cocaine, oxycodone, and methamphetamine were all classified as Schedule 2 drugs.)

Those decisions — which Nixon adviser John Ehrlichman later said were politically motivated — continue to have a ripple effect today. Research into psychedelic treatments was put on hold for 30 years.

While the recent studies have been small in scope, they have shown remarkable effects. Prescription drugs approved for conditions such as anxiety or depression help at best 40% to 60% of patients. In early trials, psychedelics have reached efficacy rates of more than 70%.

And unlike most prescribed medications, which stop working soon after patients quit taking them, one or two treatments of psilocybin can have lasting effects of six months, a year, or even longer, according to one Johns Hopkins study. With minimal risk of addiction or overdose and centuries of use by Indigenous cultures, psilocybin is seen by many researchers as a potential breakthrough treatment with great benefits and few risks.

Scott Aaronson, director of clinical research programs at Sheppard Pratt, a nonprofit psychiatric hospital outside Baltimore, has been studying difficult-to-treat mood disorders for 40 years, starting with some of the early studies on Prozac.

“I’m a cynical, skeptical, sarcastic human being,” Aaronson said. “And I will tell you, I have never seen anything like it in all my years.”

But psilocybin is not without risks. It can exacerbate heart problems and trigger schizophrenia in those with a genetic predisposition, and the combination of psilocybin and lithium may cause seizures. Clinical trials have generally screened out patients at risk for such complications. Still, a significant portion of those who consume psilocybin, even without any of those concerns, have a negative experience.

“At a high dose, about a third of people in our studies, even under these ideal conditions, can have what would be called a bad trip, some degree of substantial anxiety or fear,” said Johnson, the Johns Hopkins researcher. “A person can be very psychologically vulnerable. It can feel like they’re dying.”

Sometimes, though, even those “bad trips” can lead to help with depression or other issues, researchers have found, especially with follow-up help from a therapist to process the experience.

The psychedelic effects of psilocybin can also disconnect a person from reality, which can lead people to do dangerous things, like running out into traffic or jumping out a window.

“The very conception of reality and themselves in reality, like who they are — these things can be profoundly changed and it’s not a good recipe for interacting in public,” Johnson said.

Researchers also describe cases where psilocybin puts people with unresolved psychological issues into long-term distress.

That’s why researchers are adamant that psilocybin should be administered in a clinical setting with trained therapists who can guide people through the experience, deal with negative outcomes when they emerge, and help people process and integrate their experiences.

Clinical trials of psilocybin have relied on strict protocols, involving one or more sessions before the treatment to help the test subjects understand what to expect. The ingestion of the mushrooms is often done in a single day, with one or two therapists on hand. In the following days, the person returns for what’s known as integration, typically a one-on-one therapy session to help process the experience and to begin the journey toward healing. Some trials add an extra day of therapy in between two treatments.

Unlike with a typical medication, patients aren’t sent home with a bottle of pills.The entire protocol is more like a medical procedure.

But it’s a misconception that it’s the psychedelic medicine doing all the work, not the therapy that comes afterward, said Jeffrey LaPratt, a psychologist and psilocybin researcher with Sheppard Pratt. “It’s really hard work and it takes vulnerability. It takes courage. It can be really painful.”

***

Former NHL player Steve Downie felt as if something in him was broken when he was invited to the Wake retreat in Jamaica. His days were filled with fog. He was living with depression, often unable to leave his home.

“I got tired of going to those doctors and tired of talking to them,” Downie said. “Don’t get me wrong — I’m not saying doctors are bad. I’m just saying, in my personal experience, what I went through, it wasn’t positive. And it just comes to a point where you got to try something new, and that’s why I’m here.”

He also had trauma in his life he’d never truly confronted. When Downie was 8 years old, his father died in a car crash driving him to hockey practice. Throwing himself deep into the sport was his only way of coping with his father’s death. Like Cote, his teammate on the Flyers for two years, he played the game with reckless abandon, launching himself into violent collisions that left both him and his opponents bloodied.

After a junior career marred by a hazing controversy, Downie started his first NHL season, in 2007, with a 20-game suspension for a brutal check into the boards in a preseason contest that sent his opponent off the ice on a stretcher. It remains one of the longest suspensions ever issued by the league. In the hockey press, he was labeled a villain, a thug, a goon, and borderline psychotic. The words stung a little, even when he tried to laugh them off.

“I got no teeth, and I am small, so they can’t be all that wrong,” Downie said. “Right? End of the day, it was a job. I did what I was asked.”

Over his nine seasons playing for five NHL teams, he endured more concussions than he could remember. Deaf in one ear, on the verge of tears every day, and fairly certain he was drinking too much, Downie, now 36, would look in the mirror some days and wonder if he would be dead in six months. He didn’t know anything about psychedelics, just that Cote had told him he would help when Downie was ready.

“I called Riley and I said, ‘I need something, man.’ I got tired of going to doctors and talking to them,” Downie said. “A lot of the pills they give you, they eat at your brain. They don’t really help you.”

Justin Renfrow, a 33-year-old lineman who played in the NFL and in Canada, came seeking clarity. He was considering retiring from professional football, something that both scared and excited him. He’d been playing for half his life, and the game was a huge part of his identity. It was the last connection he had to his grandmother, one of the most important people in his life. She was the one who went on recruiting trips with him. After she died in 2021, Renfrow felt that a part of her was still with him as long as he played the game.

But after a decade of playing professionally, Renfrow’s body was battered. One of his knees was aching. He had come to loathe pharmaceutical drugs. He said he’d been prescribed so many different drugs by team doctors — including stomach coaters and nerve blockers so he could take more painkillers — that his body started to experience terrible side effects. Once, he said, he had such a bad reaction to a combination of painkillers he’d been given, he needed medical attention after he sweated through his clothes and began to have trouble breathing.

“It’s just, ‘We need to make the playoffs, so take this,’” Renfrow said. “It threw my body into a tailspin.”

He’d used psychedelic mushrooms numerous times, mainly as a way to cope with the pain brought on by football, but he’d never used them as part of a ceremony or to be meditative. On this trip, he sought clarity. Was it time to walk away from football? He was passionate about cooking and thinking of starting his own show on YouTube. Maybe it was time to shift his focus and let football fade away.

“I’ve got a lot of people who depend on me every day,” Renfrow said.

The ceremony, the athletes hoped, would guide them toward some answers.

***

The research into psychedelics is promising and exciting, but the effectiveness of mushrooms as a treatment isn’t fully settled. But even if psilocybin and other psychedelics prove to be nothing more than a placebo — which some researchers say is possible — many athletes swear they are finding real relief from the anxiety, depression, and other traumas lingering from their playing days.

With a potential multibillion-dollar global market, there’s also a huge financial incentive. Wake is just one of a growing number of for-profit startups backed by private investment money staking a claim in the psychedelic treatment space. They and others hope to open treatment centers or sell the drugs in the U.S. and Canada eventually. Magic mushrooms are illegal to produce, sell, or possess in Canada.

During the Jamaica retreat, Wake leaders gave a presentation to participants on how they could invest in the company.

Macleod said he grew interested in psychedelic therapy not as a business opportunity but after he lost his sister, Heather, six years ago to suicide. Losing her drove him to search for answers. His sister had been a competitive skier in Canada, but a series of falls led to multiple concussions, and throughout her adult life she had anxiety and depression. Traditional medicine repeatedly failed her, Macleod said. Every week, he finds himself wishing he’d known then what he knows now and used it to try to save her.

“I can’t tell you how many people come to me who are struggling like my sister was,” he said. “God, I wish she could be here. I know that she’d be cheering us on. I see her sometimes looking down on us and saying, ‘Help other people who were stuck where I was.’”

Eager to bring psychedelic treatments to consumers, corporate firms often extrapolate research findings from tightly controlled clinical trials with carefully selected patients to promote broader use by the general population in almost any setting.

“The push for psychedelics generally is being driven by people that want to make money, much more than it is about scientists,” said Kevin Sabet, a former White House Office of National Drug Control Policy senior adviser who’s now president and CEO of Smart Approaches to Marijuana, a political group opposed to marijuana legalization. “Why would we let the Wall Street investors, who are really the ones here trying to make money, be driving the conversation?”

Commercialization could be both good and bad for psychedelics. On the one hand, it could provide funding for research; on the other, the desire for a return on that investment could improperly influence the results and put patients at risk.

“Your business model isn’t going to work well when someone’s jumped out of a window and it’s on the front page of The New York Times,” said Johnson, the Johns Hopkins researcher.

Clinical research must also overcome the mushroom’s image as a party drug, something hippies share out of plastic baggies in the back rows of concerts. To change that narrative, Wake and other companies say, they are leaning hard into the science. This isn’t thrill-seeking, they say, but legitimate medicine treating real psychiatric conditions. It’s the same argument proponents of marijuana legalization made, whether they believed it or were using it as a means to an end — pushing to legalize cannabis as medicine before opening the floodgates to unfettered recreational use.

Wake leaders, like most executives in the psychedelic space, have said they are committed to assisting research to prove to federal regulators that psilocybin is safe and effective. Blood and saliva samples a doctor collected at the Wake retreat, they said, would be used to identify genetic markers that could predict who will respond to psilocybin treatment.

Wake’s team had participants use a helmet containing experimental imaging technology that had been used in clinical trials to track brain activity before, during, and after psychedelic experiences. As part of the research, participants wore the helmet while playing games of Wordle.

Many academic researchers wonder whether some companies are simply applying a veneer of science to a moneymaking endeavor, what many skeptics refer to as “placebo theater.”

Indeed, Aaronson fears the field could soon be “full of hucksters.”

“The problem you’ve got is that, not surprisingly, social media and communications works much faster than science does,” he said. “So everybody’s trying to get their hands on this stuff because they think it’s going to be incredible.”

Aaronson has designed clinical trial protocols for Compass Pathways, a competing for-profit company seeking to market psilocybin treatments, and has turned down other firms looking to create a footprint in the psychedelic space. (Aaronson receives funding from Compass to support his research but said he has no direct financial interest in the company.)

“I worry about who’s backing the play from some of these companies and try to figure out what somebody is really after,” he said. “You talk to people and you see whether there’s a real plan to do research or there’s a real plan to sell something.”

***

A hum of nervous tension lingered in the air as the athletes prepared for the ceremony. At breakfast, there wasn’t a lot of small talk. The attendees milled about, checking in with Wake’s medical personnel to offer up their blood and saliva samples. Some participated in a yoga class in an outdoor studio that overlooked the jungle.

Wake had hired a Jamaican shaman — a woman named Sherece Cowan, a vegan food entrepreneur who was a 2012 Miss Universe Jamaica runner-up — to lead the athletes in the ceremony. She asked to be called Sita and referred to herself as a plant medicine facilitator.

She spoke slowly and deliberately, waving smoke from an urn as she urged participants to gather in a circle on the lawn of the estate. After drinking a 3- to 5-gram dose of psilocybin, which had been ground into a powder and mixed with orange juice, the athletes would slip into a dream state for the next four to six hours.

“I hope that you get all that you need. It may not be all that you’re asking for, but I hope you receive all that you need,” Cowan said. “Blessings on your journey.”

A local musician began to play, his drums and chimes intended to enhance the journey. Most of the athletes lay on mats, as if sleeping. Cote sat in a yoga pose. Nick Murray, Wake’s CEO, had asked Cote to wear special headgear — an electroencephalography device smaller than the other helmet — to measure his brain activity. Except for the musician’s drums and chimes, it was quiet. The wind occasionally rustled the leaves on the trees at the edge of the property, but for the next six hours, inside the circle, time mostly stood still.

Two hours into the ceremony, after the psychedelic had kicked in, whatever was taking place was occurring inside the athletes’ heads. Cote, remarkably, was still holding his yoga pose.

The stillness was broken when Renfrow stood up from his mat after three hours. He’d worn a sweatshirt to the ceremony with his initials, JR, emblazoned across the chest. He peeled the shirt off his body in frustration and tossed it aside.

Tears spilled down his face.

As the ceremony wound down, the athletes began sitting up, and a few chatted quietly.

Most weren’t sure how to describe the experience. For some, it felt like a descent into the recesses of the mind, with colors and emotions swirling together. Others said they confronted traumas they thought they’d buried, or emotions they wanted to suppress. They expressed feeling a connection to the other people in the circle.

“It’s the ultimate ego killer because, for me at least, it gives you incredible empathy that you’ve never felt before,” Lee said. “When you’re doing a journey with other people, you see yourself in them. It’s almost like you’re walking past a mirror, different mirrors. You see parts of yourself in everybody and you realize that we’re all connected and we’re all going through something, we’re all in some sort of pain, and it humbles you.”

Most of the athletes drifted off to be alone so they could scribble down their thoughts in a journal, per instructions from Wake staffers. There would be a communal therapy session the next morning.

Each would be asked to share something from their journey.

***

In the end, most of those curious about psilocybin simply want to know: Does it work? And how does it work? Scientists say those are difficult questions to answer right now.

Researchers have discovered that classic psychedelics, like psilocybin and LSD, act on the serotonin 2A receptor, the same receptor targeted by the most common antidepressants on the market. But beyond that, the understanding of how they work to help people is, at this point, more theory or conjecture than scientific fact.

Johnson, the Johns Hopkins researcher, said psilocybin helps increase openness in people, allowing them to step outside of their vision of who they are. Someone who is resigned to being a smoker who can’t quit or a person with depression who can’t find happiness can, under the influence of psychedelics, view themselves in a different way, he said.

“Once they’re outside of the mental trap, it just becomes so obvious to people with these different disorders that, ‘You know what? I can just decide to quit smoking. I can cast aside my sadness,’” Johnson said.

Studies with rats show that psychedelics also appear to increase neuronal connectivity in the brain, even after a single dose. That could help the brain recover from traumatic injuries or concussions, finding new pathways around damaged areas.

The prevailing theory of how psilocybin and other psychedelics might help treat mental health is that they tamp down activity in the brain’s default mode network. It’s a set of regions in the brain that are engaged when people are ruminating about something and one of the few parts that is overactive in people with depression.

They often revisit mistakes they’ve made over and over again or continually beat themselves up about them, said LaPratt, the Sheppard Pratt researcher. That overactivity in the default mode network leads to repetitive patterns of negative thoughts — What’s wrong with me? Why am I so unhappy? — from which the person cannot escape.

People with depression often ruminate about the past; people with anxiety, about the future.

“You may have something coming up and then the brain starts thinking, and again, like that broken record,” LaPratt said. “It can be very easy to start thinking about how everything might go wrong and start catastrophizing.”

That repetitive thinking prevails in people with other conditions, too, including obsessive compulsive disorder and post-traumatic stress disorder. It begins to affect their sense of who they are; they define themselves as their condition.

But psychedelics seem to help people examine old traumas without falling back into the same kind of destructive loop. They can help people feel more connected to others. Depression and anxiety aren’t simply erased, LaPratt said, but people can gain a new perspective on their problems and start to feel, maybe for the first time, that they can shake them off.

“We see increased openness and some motivation for changing behaviors,” he said.

Psychedelics are mostly out of a person’s system by the next morning, but, according to researchers, that increased openness can last for weeks or months without additional doses, providing a window during which they can begin to address their problems.

“It is maybe that we’re helping people get to the point of being able to accept the things they can’t change and to change the things that they can,” Aaronson said, echoing the Serenity Prayer, often used in 12-step recovery programs. “Personal autonomy is taken away from people with depression. They don’t feel like they can operate in their own best interest. They get caught in internal conflict. And I think this helps them get beyond that.”

***

In the morning, the athletes gathered on a patio for a form of group therapy called integration. It was scheduled to last at least two hours. Macleod explained it was an essential part of understanding a psilocybin journey. Every attendee had an opportunity to share something from their experience, whether it was enlightening, confusing, uplifting, or a mixture of many emotions.

Lee spoke about his anxiety, about trying to understand what his identity would be now that he wasn’t a boxer. By walking away from the ring, he feared he was letting down all the people who supported him when he chose a boxing career instead of a job in finance after he graduated from Notre Dame. But now he’d come to understand those were his own insecurities. He could walk his own path. He could help people experiencing similar physical and emotional pain.

Renfrow took several deep breaths as he searched for words. For most of his life, he’d viewed himself as a football player. But on his psilocybin journey, he felt as if members of his family told him it was OK to let go. When he stood up during the ceremony and peeled off his shirt with his initials, he said, he was symbolically letting go of something.

“It’s OK to stop chasing the football journey,” Renfrow said. “I’m not going to suit up this year and that’s cool with me. I’ll be able to figure it out.”

In saying goodbye to football, he said, he was saying goodbye to his grandmother.

“Football was her,” Renfrow said, and he began crying. “We went on all my recruiting trips. So I had to let her go with letting football go. And that was a big moment when I stood up. I had to let her go. So it was tough, but I had to do it.”

When it was Downie’s turn, he tried to defuse the tension by joking that it was time to go eat. He didn’t want to open up to the group, he said. He’d written some notes on a sheet of paper. His hands shook as he tried to read them.

“I wasn’t drinking and I wasn’t doing drugs for fun,” Downie said, his voice trembling. “I was numbing my brain because it was f—ed. I couldn’t turn out of my driveway for a year. I sat in dark rooms and I turned to drugs and alcohol.”

But on the psychedelic trip, he said, he was able to connect with his past. “I’m sitting there and I’m going through my brain, I’m talking to my dad, I’m talking to my family members. I’ve said sorry to everyone I could possibly say sorry to,” he said. “It made me cry. It made me feel good.”

He realized, through the journey, he wanted to be a better man. His voice was shaking as he tried to get the words out.

“At the end of all this, I think what I’ve learned is how to control what goes on. I do have control. I can control this,” he said. “I’m going to go home and I’m going to identify and execute and be a better father and stay around for my kids, deal with my concussion problems as best I can.”

He turned to look directly at Cote, tears streaming down his cheeks from behind his sunglasses.

“I mean this, bro, when I say you saved my life.”

As Downie’s words gave way to silence, Lee stood up from his chair. He crossed the circle, walked over to Downie, and opened his arms wide. The two fighters, who came to Jamaica sad and broken, embraced.

***

While studies have found that psilocybin plus therapy is more effective than therapy alone, it’s unclear whether psilocybin alone, without the preparatory work or the integration afterward, has any effect.

“There’s a reason why people who go to raves and take psilocybin don’t get cured,” Aaronson said. “Psilocybin is not an antidepressant.”

Even within strict clinical trial protocols, the question remains whether psilocybin-assisted therapy works. Preliminary studies have been promising, but the numbers of test subjects have been small. Much larger studies are needed to determine both safety and efficacy.

Still, that hasn’t stopped psilocybin advocates from touting the research to date, implying it is more definitive than it is. Moreover, many mushroom evangelists attribute the positive effects from clinical trials to taking psilocybin in general, discounting the protocols used in the studies.

The Wake retreat in Jamaica, for example, had the athletes take psilocybin in group ceremonies guided by Cowan, the local shaman, while the group integration sessions were led by an osteopathic physician. Neither was a licensed psychotherapist, Murray said. It’s unclear whether the benefits of psilocybin therapy suggested by clinical research would apply to a group setting — for the dosing or the integration.

Murray, Wake’s CEO, said that while clinical research strives to remove any variables, such as interactions between test subjects, Wake leaders feel the group setting offers benefits to its clients.

“It’s that group feeling that, ‘We’re in this together. My divorce is like your divorce. I lost a brother,’” he said. “That’s tough to put into a clinical trial.”

Wake had registered to hold a clinical trial in Jamaica, but Murray said the company ultimately decided not to pursue it, focusing on offering treatment instead.

Still, Murray said Wake is contributing to scientific research: They collected the blood and saliva samples, and participants were asked to fill out questionnaires before and after the retreat to help assess whether the treatment worked.

Murray said Wake uses the same clinically validated questionnaires used in a psychiatrist’s office. “So, it’s not theater. These are the actual tools that are used,” he said. It would be hard with Wake’s approach, however, to parse whether participants were helped by the mushrooms and integration or by other influences, such as being on vacation in Jamaica, being among a supportive peer group, or the marijuana many of them smoked regularly during the retreat.

“You’ve got to at least listen and take it seriously. There’s anecdotes of people saying they would have killed themselves,” Johnson said. “Sometimes you do see just the ‘full monty’ experience, where this person is just there on a dark, dark trajectory and their whole life changes. I suspect this is real. Something’s happening with these athletes making these reports.”

Glowing anecdotes, particularly when they come from high-profile athletes or celebrities, carry weight with the public and help spur measures like those in Oregon and Colorado that are establishing pathways to psilocybin treatment regardless of what researchers or regulators think.

“When people are upset and we’re not meeting their needs, they’re going to try things out,” said Atheir Abbas, an assistant professor of behavioral neuroscience at Oregon Health & Science University. “Hopefully, scientists can catch up to understanding why people think this is really helpful. And maybe it is helpful, but let’s try to figure out if it is and how.”

But there’s a danger in taking these stories, no matter how compelling, and extrapolating safety or efficacy from them.

“The hard part is the plural of anecdote is not data,” said Sabet, the Smart Approaches to Marijuana CEO. “And the data isn’t there yet.”

***

A year after the retreat, Downie, Renfrow, and Lee said they believed their psilocybin journey had helped them. It did not magically fix all their issues, but each considered it a positive experience.

Downie no longer feels that he is stuck in a dark place. When he returned to Ontario, he said, his family noticed a difference right away.

“That trip gave me a lot of clarity,” Downie said. “It gives you directions. It kind of gives you answers internally. It’s a unique thing I experienced. My year was definitely better than the previous year, that’s for sure. … Do I think it could help other people? I would say yes. Did it help me? Absolutely.”

No longer feeling like a prisoner in his house, Downie started a snowmobile camp that takes adults on guided adventures around Moosonee, near James Bay. It’s something he used to do with his family before his hockey career took off.

“It’s not much to brag about, but it’s the most northern you can go in Ontario in a snowmobile,” Downie said. “A lot of adults come from all over. It’s a pretty cool experience. It’s always been a passion of mine.”

He still has lingering issues from his concussions and suspects he always will.

“It is what it is,” he said. “Would I say it’s getting better? It’s a process.”

The most positive outcome has been the joy he’s found in being a father.

“My little guy is starting to fall in love with hockey, which is something I’ve been waiting for,” Downie said.

Although Downie hasn’t taken another psilocybin journey, he said he would be open to it.

Renfrow emerged from the ceremony intent on retiring from professional football but three months later re-signed with the Canadian Football League’s Edmonton Elks. This year, he joined the National Arena League’s Jacksonville Sharks, in part to be closer to his son.

“At that time, I thought I was going to quit football,” he said.

But he feels comfortable where he is and says he’s fulfilling his goals, including hosting that cooking show on YouTube he’d hoped to do. And he said he’s having fun again. He now turns to mushrooms whenever he has a big decision to make.

“I wholehearted believe in that and all the kind of guidance it’s given me,” he said. “You couldn’t ask for a better thing, to have followed guidance from a mushroom journey.”

Lee moved from California to Austin, Texas, and now runs a CBD business with his sister. Finding his post-boxing identity has remained a process. In his psychedelic journeys at the Wake retreat, Lee said, he was never thinking about sports or boxing. His visions were all about family, God, the universe.

“It kind of just makes me realize how much importance I’m putting on something that my subconscious doesn’t even care about,” he said. “My subconscious doesn’t care that I’m a boxer, that I was a fighter and did this and did that. It’s all kind of ego.”

The experience, he said, helped him understand how powerful the mind can be — that it can be a friend or a foe.

“I came away from it kind of realizing that I have all the tools to heal myself,” he said. “That’s huge. Because, especially for guys who have had concussions or athletes or what have you, you feel kind of isolated, you feel alone, you feel hopeless. So it kind of gives you a sense of hope.”

It allowed him to move beyond the need to prove himself, in the ring or outside it, to stop measuring his worth by his accomplishments. He’s become obsessed with much calmer, nonviolent pursuits: surfing and pickleball.

“I can turn my brain off just like in boxing,” he said. “But at the same time, it’s easier on my body and just, I don’t know, more fulfilling. I don’t have to prove anything.”

The Jamaican trip is allowing him to move forward, to do the work necessary to heal.

“Part of me went into it hoping that all my problems would be solved, but putting those expectations on it can be difficult,” he said. “Am I cured? No. But did it really help? And was it, like, one of the most profound experiences of my life?

“I’d say yes.”

This article was reported and written by KFF Health News’ Markian Hawryluk and ESPN’s Kevin Van Valkenburg. Researcher John Mastroberardino contributed to this report.

[Editor’s note: As part of the reporting of this article, some members of ESPN’s reporting team, under the guidance of Wake Network staff, used psilocybin. Wake Network was compensated, but not by ESPN.]

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).

In 2014, Lisa French had spinal surgery. Before the operation, she was told she would have to pay $1,337 in out-of-pocket costs and that her insurance would cover the rest. However, the hospital ended up sending French a bill for $229,000. When she didn’t pay, it sued her.

The case went all the way to the Colorado Supreme Court. In this episode of “An Arm and a Leg,” host Dan Weissmann finds out how the court ruled and how the decision is reshaping the fine print on hospital bills in ways that could cost patients a lot of money.

Dan Weissmann

@danweissmann

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

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Transcript: A $229,000 Medical Bill Goes to Court

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–

Lisa French was a clerk for a trucking company in Denver. She’d been in a car crash, and her doctor told her that to keep her spine stable, she ought to get surgery.

She asked the folks at the hospital what it was gonna cost her, out of pocket. They ran her insurance and told her: Your end is going to be one thousand, three hundred thirty-six dollars, and ninety cents.

She said, thanks.

Then, she and her husband sat down at their kitchen table and talked it over: They had a rainy-day fund. A thousand dollars they’d socked away, they kept it at home, in cash. Were they ready to spend it all for this? 

They decided they were, and Lisa went to the hospital with a thousand dollars cash. 

She had the surgery, it went fine. The hospital had been expecting about 55 thousand dollars from Lisa’s insurance. They actually got more like 74 thousand.

But they decided that wasn’t enough. They decided they wanted their full sticker price: 303 thousand dollars. So they billed Lisa French for the rest: 229 thousand dollars.

And when they didn’t get it, they sued her.

Lisa French had her surgery in 2014. The court case finally got resolved last year, in 2022, by the Colorado Supreme Court.

If you’ve been listening to this show for a while, you probably remember: We have gotten VERY interested in understanding, when we get a wild medical bill, what legal rights do we have? How can we use those rights to fight back? Even on a small scale, like in small claims court? 

And even though Lisa French’s case is a LONG way from small claims court, it has a LOT to teach us about these questions.

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

And I should say upfront: We won’t be hearing from Lisa French directly.

Her case made a lot of headlines– in 2018, when a jury heard it, in YEAR when an appeals court overturned the trial court, and last year when the state supreme court made its ruling.

Not in the kind of detail that we’re gonna go into, but come on: Who can resist the headline?

Male Anchor: Well, tonight we have a story of David versus Goliath. David being a woman who needed spinal surgery in 2014 Goliath, the hospital that charged her more than $200,000 to do it.

Dan: So over the years, a lot of reporters wanted a sound bite from Lisa French. Her attorney used to let her know when there was an inquiry, and she’d say yes or no.

Eventually, she told her lawyer: Don’t even tell me when they call anymore. I just want to live my life.

Fair enough.

So here’s who we’ve got.

Ted Lavender: I’m Ted Lavender. I’m an attorney in Atlanta, Georgia. I’ve been practicing law for 26 years,

Dan: And he spent several of those years representing Lisa French.

It’s probably worth answering one question up front: If Lisa French had to empty her family’s rainy-day fund to pay the hospital a thousand bucks, who’s paying the lawyer from Atlanta?

The insurance from her job. Which had played a role in starting the whole mess.

Ted Lavender: the company that she worked for had a health benefits plan that was slightly different than what you might call run of the mill health insurance.

Dan: It worked this way: They weren’t in-network with any hospitals. Instead, they’d just take whatever bill any hospital sent, make their own evaluation of what a fair price would be, and send the hospital a check.

It’s a somewhat unusual model– one survey says about 2 percent of employers use a plan like this– but Ted Lavender says it often works.

Ted Lavender: a very large percentage of the time , the hospital would accept the check and no one would hear anything more from the hospital, which in legal parlance would mean acceptance

Dan: And as a backstop, in case there was any trouble, the health plan would send a lawyer. That’s Ted.

And here’s what happened that led to all the trouble in Lisa French’s case: Whoever ran her insurance card at the hospital, they didn’t read it very carefully.

If they had, they would’ve seen a little logo under the insurance-company name that said, “provider only” — that is: This plan only has doctors and nurses and other PROVIDERS in network.

With hospitals, there’s no network, no “in-network rate.” We’ll just send a check for what we think is right.

The same health-benefits company has a different plan, one that does have a hospital network. You know how it is. Insurance companies, a million different plans, every one its own snowflake.

The hospital mistook Lisa French’s snowflake for another one, and that’s how they came up with that estimate.

Ted Lavender: based on their calculation, they expected to collect a total of

$56,000, the 1,336 from Ms. French and the remainder from her health plan.

Dan: And they presumably would’ve been happy with 56 thousand. But they got more. They got about 75 thousand dollars.

But once they got it, they wised up to the mistake they had made about Lisa French’s insurance. They had no agreement with the insurance plan to accept 56 thousand.

So, they decided: There’s no reason for us not to charge our full sticker price here.Three hundred and three thousand dollars.

So Lisa French had been expecting a bill for three hundred thirty-six dollars and ninety cents. That’s the difference between what she’d been quoted and the thousand dollars she’d paid in advance. But the bill she got wasn’t what she expected.

Ted Lavender: it turned out to be a whopper of a bill. We ended up with an itemized bill that showed every line item for every charge that totaled this

$303,000

And then at the bottom was, you know, subtracting the thousand she paid, subtracting the money the insurance paid, leaving a balance of 229,000 and change

Dan: Of course, Lisa French did not have 229 thousand dollars, or anything like it.

Ted Lavender: Eventually she got a visit from the sheriff who served her with a lawsuit and she was sued for that $229,000.

Dan: And that’s where Ted Lavender entered the scene.

The jury trial in 2018 took six days. As Ted Lavender says, it wasn’t exactly a splashy murder trial, in terms of drama.

Ted Lavender: this was a six day trial involving hospital billing. So, you know, there was no murder weapon. There was no aha, big, gotcha moment that was really exciting.

Dan: But Ted Lavender did his best. Like one time, when he got a hospital executive on the witness stand.

To stabilize Lisa French’s spine, surgeons had implanted 13 pieces of metal into her body. So Ted Lavender had the hospital executive walk the jury through the price for each of those bits of metal. Or actually, the prices..

Ted Lavender: And I first showed him the itemized bill and asked him to identify what they charged for these 13 pieces of hardware .

I had given him sort of an oversized calculator that was sitting there in front of him on the witness stand, admittedly, for some dramatic effect

And through adding these up on the itemized bill, he arrived at the number which was $197,000.

Dan: A hundred and ninety-seven thousand dollars. So that’s about two-thirds of the three hundred and three thousand dollars the hospital is trying to charge Lisa French.

And then the next thing I did was I handed in the 13 invoices that we had received from the hospital,

Dan: That is, Ted handed the guy the invoices the hospital had received — and paid — when it bought those bits of metal..

Ted Lavender: and I asked him to add up and tell this jury what did the hospital pay for these 13 pieces of hardware.

He’s adding, and he’s adding and he’s punching in numbers, and he’s turning pages and he’s adding, and he’s adding with each addition, with each plus the jury seemed to ease a little closer up to the front of their chair, and ultimately he arrived at the total, which was $31,000 and change.

Dan: So the hospital’s charging like six and a half times what they paid. And that’s two thirds of this 300 thousand dollar bill.

Ted Lavender: It just, you know, the jury seemingly did not like that.

Dan: So that was a good moment for Lisa French’s side. I mean getting the jury mad at the other side, that’s a win.

And the big calculator wasn’t Ted Lavender’s only visual: He also had a giant post-it note, where he wrote down, in magic marker, all the different prices the hospital accepted for the surgery, depending on who was paying.

Ted Lavender: and we got these numbers from the hospital, they would’ve accepted $146,000 from private insurance.

Dan: That’s less than half of what they were trying to charge Lisa French. And they accepted less than that — a LOT less — from government-funded insurance, like Medicare, Medicaid, or Tricare, which covers folks in the military.

Ted Lavender: The average of what they would’ve accepted for these. Procedures that Ms. French had were $63,199. Again, Ms. French and her insurance company combined paid almost $75,000.

Dan: You can hear that post-it rustling around. It was a good prop, he’s held onto it. So, he’d shown the jury that the hospital charged a HUGE markup, and that what they were suing Lisa French for was way, way more than they charged anybody else.

On the hospital’s side, they were like, Yeah, but this is our actual sticker price. And Lisa French signed a piece of paper that said she would pay “all charges of the hospital.”

So the hospital was like, yep, and these are our charges. That 303 thousand dollars, it comes from a list we keep. It’s called the chargemaster. That’s what Lisa French was signing up for.

And this became something the jury had to decide:

When Lisa French signed a piece of paper saying she’d pay “all charges of the hospital” — was she specifically agreeing to pay what was on the chargemaster?

And here’s one thing that might’ve made jurors a little skeptical on that score: The hospital never showed that chargemaster list to Lisa French. Not before her surgery, not after it. They said it was a trade secret.

Ted Lavender: they went all the way through trial. Never producing it though. We, we, we asked at the very beginning, once the lawsuit was filed, , basically you get to ask questions. Give me this information, give me information that supports your case or helps my case.

And we ask specifically for the charge master and they refuse to produce it on the basis that it was confidential and proprietary.

Dan: By withholding that list, the hospital may have helped Ted Lavender make his argument: How could Lisa French have known what she was signing up for, if she couldn’t see the prices?

Ted Lavender: if we can’t get it through our subpoena power, how in the world would Lisa Friendship been able to use it by, had she asked?

And admittedly she didn’t ask for it, but if she had, surely they wouldn’t have given it to her either.

Dan: In the end, the jury agreed: Lisa French had not specifically agreed to pay the hospital’s chargemaster prices.

And the only other alternative was: She agreed to pay something reasonable.

The jury decided she owed the hospital seven hundred seventy six dollars and 74 cents

Basically, that’s the three hundred and some left over from the original estimate, plus some extra — because she wound up staying in the hospital one night more than expected: She owed a fee for late check-out.

Of course the hospital did not take that lying down. They appealed the outcome– and won! Ted Lavender appealed that decision, which is how the case ended up in front of the Colorado Supreme Court.

We’ve actually got tape of those proceedings. They’re kinda juicy. Plus the outcome, and why it matters for the rest of us. That’s right after this.

This episode of An Arm and a Leg is produced in partnership with KFF Health News–formerly known as Kaiser Health News.

They’re a national newsroom producing in-depth journalism about health care in America. We’ll have more information about KFF Health News at the end of this episode.

OK, so Lisa French’s case was headed to the Colorado Supreme Court.

And here’s the big issue. Remember how the jury found that Lisa French hadn’t actually agreed to pay the hospital’s chargemaster price, the three hundred and three thousand dollars?

The hospital argued: The jury never should’ve been asked to consider that question.

The law — legal precedent — makes it open and shut: The appeals court had agreed. And it had cited other cases from courts around the country.

So when the hospital’s lawyer, Mike McConnell, got up to address the Supreme Court, he led with those citations.

Mike McConnell: All of the questions that you have raised have been addressed in more than a dozen cases around the country. carefully and thoroughly.

Justice Richard L. Gabriel: Well, let me push back on you. Good morning to you, Mr. McConnell.

Mike McConnell: Good morning.

Dan: This is Justice Richard L Gabriel, stepping right in. He notes that these dozen other decisions all rest on one original case, from 2008, where a court had said: We can’t intervene in health care pricing. Courts shouldn’t try. Health care is too complicated.

Justice Gabriel wasn’t convinced.

Justice Richard L. Gabriel: I guess the question I have is why, you know? I, you know, we may not be the smartest people in the world, but this is a contract and why should the hospital industry— different than any other industry on the planet —have different rules for contract principles?

Dan: The hospital lawyer argued that hospitals couldn’t predict everything that would happen in a patient’s care. In fact, the hospital can’t even control it: Only physicians can decide what treatment to order.

Mike McConnell: You can, uh, I guess imagine that hospitals ought to be able to predict in advance what a particular physician is going to order for a particular patient. Um, and, uh, perhaps, you know, obviously you feel that is the way it ought to be. It is not the way it is, but now

Justice Melissa Hart: Mr. Mr. McConnell, I’m sorry, to interrupt…

Dan: Here’s justice Melissa Hart breaking in

Justice Melissa Hart: …the hospital did provide an estimate in this case. They did calculate what they thought this was going to cost and tell her that. So it is, it seems false to me that they can’t do it. Of course, they can’t predict with absolute certainty. In this case, she had the extra night stay in the hospital and she paid for that. But they can predict in a case like this, and they do.

Dan: The justices didn’t seem super-persuaded by McConnell’s response to that. And that left one more big question in front of the justices.

When Lisa French signed a document promising to pay “all charges,” was she definitely agreeing to pay three hundred and three thousand dollars? Or 229 after insurance.

The appeals court found that the chargemaster rate — the 303 thousand — had been “incorporated by reference” to the document she’d signed, officially called the “hospital services agreement.”

The supreme court wasn’t convinced. Here’s Justice Richard Gabriel again.

Justice Richard L. Gabriel: There’s no reference to the charge master on the face of the hospital services agreement.

How could she have assented to something she never even knew existed?

Dan: And here’s how the hospital’s lawyer responded.

Mike McConnell: When she read the provision, all charges not otherwise paid by insurance. She understood that the hospital charges would, she was responsible for paying the hospital charges that her insurance company did it,

Justice Richard L. Gabriel: Whatever it was. They could have charged her a billion dollars and she’s your position to be she’s bound because she agreed. All charges means all charges.

Dan: Huh! There wasn’t a real comeback to that.

The Supreme Court ruled against the hospital, unanimously. Specifically, they ruled that the chargemaster– the 303 thousand dollars– had not been “incorporated by reference” to the piece of paper Lisa French had signed.

She didn’t know those chargemaster list prices even existed. How could she agree to pay them?

So that meant, the court ruled that, quote, “the hospital services agreements left the price term open.”

Which is language that may ring a bell, if you’ve been listening to this show. It’s a legal principle — a bedrock of contract law:

How the law treats an open-price contract — a contract that doesn’t specify a price term.

Here’s a refresher on that principle from Ted Lavender.

Ted Lavender: if you go to McDonald’s and order a, a quarter pounder with cheese and you know, value meal number three, they tell you the price and that is the price that you have to pay. And then they give you your meal.

You enter that contract with an actual price term

Dan: But you can also enter an open-price contract — a contract without a price term.

Ted Lavender: if you have a contract without a price term, without a specific price in it, then the law infer into that contract a reasonable price.

Dan: In other words, a contract with the price term OPEN is not a blank check. I don’t have to pay whatever number the other side makes up.

And that’s what the Colorado Supreme Court found here.

They ruled that, quote, “principles of contract law can certainly be applied to hospital-patient contracts.” They say, a court may have ruled otherwise in 2008, and other courts may have cited that opinion. We disagree.

The Colorado Supreme Court is saying, even in health care, when no price is specified– when the price term is open– you have the right to a reasonable price.

Yes!

And that’s why Lisa French’s case is so interesting to us, here on this show.

Because we’ve talked here about using this legal principle to fight back against outrageous bills.

We’ve heard from one guy, Jeffrey Fox, who actually took a hospital to small claims court to enforce his right to a reasonable price. And won.

We’ve heard from a listener who tried and failed, but said, more of us should try this.

And this Colorado decision seems like good news for anybody interested in doing something like that.

But honestly, it also raises a few concerns that I had not known about before. First:

Well, there ARE all those other cases out there, in other states, that follow the 2008 case, the one that says health care is too complicated for courts to get into.

And yeah, here’s Colorado saying, “No it isn’t.”

But courts in other states aren’t bound by Colorado’s decision. Hm. And second: there’s also something the Colorado court DIDN’T decide:

What if the paper Lisa French signed had specified, “I agree to pay the hospital’s CHARGEMASTER rates?” Could she be required to pay them then? Even if they were a billion dollars?

In their decision, The Colorado court wrote that the chargemaster rates are “increasingly arbitrary” and “inflated” and “have lost any direct connection to hospitals actual cost.”

So Ted Lavender thinks they might’ve said, No, we can’t be held to a billion dollars, just by adding the word “chargemaster.”

Ted Lavender: I think they would’ve answered that. No, but they did not come right out and actually answer that.

Dan: Because they didn’t HAVE to answer that question.

Ted Lavender: Courts routinely, in fact, it’s almost an objective of appeals courts. They answer as few a number of questions as possible to get to an answer. ,

Dan: So the Colorado court simpley ruled that in Lisa French’s case, the chargemaster rates weren’t “incorporated by reference” into papers she signed.

Those papers didn’t didn’t mention the chargemaster at all– and the hospital kept that chargemaster as a trade secret. Open, shut.

But… hospitals aren’t supposed to keep those rates secret anymore. For the last couple of years, thanks to an executive order from the Trump administration, federal rules have required them to post their chargemaster to the internet.

And so I had all that in mind when I heard from a listener in Atlanta.

Cindi Gatton: my name is Cindy Gatton and I’ve been an independent patient advocate for 11 years now.

Dan: Cindi’s job is helping people deal with medical bills, but she had actually written to me about her experience as a patient.

Before a medical appointment, she got the usual forms online, including one for “Patient Financial Agreement and Responsibilities”

Cindi Gatton: so I thought, you know what? I’m gonna print it and just see exactly what it says. And I’m reading through the thing it says, patient understands and agrees that he, she will be charge. The Piedmont Healthcare Standard charge master rates for all services not covered by a payer or that are self-pay.

I’ve never seen that before, and it shocked me that there was a reference to charge master rates in the financial disclosure.

Dan: And Cindi has been dealing with medical bills full-time for a decade. She’s seen a lot. So when she says it’s new, and that it’s shocking, that seems worth noting.

Cindi Gatton: it just feels wrong to me. It feels really wrong because it, it reminds me of, you know, you, you go to a website and they give you their terms and conditions. Nobody reads those. I don’t read them. You click yes so that you can move on with what it is you wanna do, which is to get care, to be seen by the doctor to, you know, have your procedure.

And I don’t know this, this feels, um, it feels manipulative to me

Dan: Yeah, and to me, it feels ominous. Like lawyers who work for hospitals have been paying attention to the Lisa French decision and thinking:

There’s a wedge here maybe we could exploit. Like, if we get you to sign a document that says “chargemaster” on it, we’re getting you to sign away your right to a reasonable price. After all, the court in Colorado didn’t come out and say that wouldn’t be kosher.

So, where I’m landing at the end of this story is: I’ve got a couple big homework assignments:

First, if I’m interested in seeing how we can use our legal rights to fight back against outrageous, unreasonable bills — and I am —

I need to learn more about which states recognize our rights to a reasonable price in health care, and which ones … maybe don’t. I’m on it, and if you’ve got any tips, please bring them.

That’s the first assignment, and for the second, I’d love your help: How many hospitals are using this “chargemaster” language these days in those financial responsbility documents they ask us to sign?

Do me a favor: See if you can get a copy of that document from any hospital system or doctor group where you get seen. And send me a copy of it?

Redact anything you need to. And also know: we’re not aiming to share this with anybody outside our reporting team.

Here’s what happened when I tried this.

A hospital where I get seen uses a portal called MyChart– a lot of hospitals use it. I just logged on to MyChart there, and I did a little digging around. I found a link to something called “My Documents.” And I found a form there called Universal Consent.”

It has stuff about financial responsibility.

It doesn’t mention chargemaster rates. But it’s a year old. It also says it’s expired.

And here’s an idea I got from Cindi, which I’m gonna try– and which seems worth passing around.

When Cindi found that chargemaster language in the document from her Hospital, here’s what she did. She printed it out and changed it:

Cindi Gatton: what I did is instead of the standard charge master rates, I drew a line through it and I wrote in two x Medicare rates.

Dan: In other words, instead of saying “I’ll pay the chargemaster rates,” it says, “I’ll pay two times the Medicare rate.”

We’ve heard about this strategy before, from former ProPublica reporter Marshall Allen, who wrote about it in his book, “Never Pay the First Bill.”

Here’s the rationale. Medicare pays less than most commercial insurance; hospitals say that at least sometimes they lose money on Medicare. Doubling it seems … generous enough. But it also sets a limit.

So that’s what Cindi wrote on her printout.

Cindi Gatton: I have been taking it with me when I go to be seen that if they ask me for the document that I can say, you know, here it is.

Dan: So far, she says, nobody’s asked for it.

And, I don’t think anybody will be confused, but just to make sure, I’ll say: This isn’t legal advice. I’m not a lawyer. Cindi’s not a lawyer.

She’s just a person going to the doctor, doing her best not to leave too many openings where she could get really screwed. And I’m gonna try following her example.

And I’ve got another request for you: If you try this trick of printing the thing out, exxing out the chargemaster language and writing 2 x medicare rates– LET ME KNOW WHAT HAPPENS, OK?

The place to do all this is on our website at arm and a leg show dot com, slash contact. That’s arm and a leg show dot com, slash, contact.

You are this show’s secret weapon. You’re our eyes and ears. Cindi Gatton’s a listener who got in touch.

How did I first learn about Lisa French’s case? Email from a listener. [Thank you, Terry N, for that note last year! Took us a minute, but we got to this.]

Thank you for listening. You absolutely rule. I’ll catch you soon.

Till then, take care of yourself.

This episode of An Arm and a Leg was produced by me, Dan Weissmann, with help from Emily Pisacreta, and edited by Afi Yellow-Duke.

Daisy Rosario is our consulting managing producer. Adam Raymonda is our audio wizard. Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. Sarah Ballema is our operations manager.

An Arm and a Leg is produced in partnership with KFF Health News–formerly known as Kaiser 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.

And yes, you did hear the name Kaiser in there, and no: KFF isn’t affiliated with the health care giant Kaiser Permanente. 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 editorial liaison to this show.

Thanks to Public Narrative — That’s a Chicago-based group that helps journalists and nonprofits tell better stories– for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about Public Narrative at www dot public narrative dot org.

And thanks to everybody who supports this show financially.

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

Thank you!

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

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

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

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[UPDATED on April 18]

The new drug looked so promising — except for that one warning sign.

At the American College of Rheumatology’s annual meeting in 2008, Duke University’s Dr. John Sundy proudly announced that pegloticase, a drug he’d helped develop, was astoundingly effective at treating severe gout, which affects perhaps 50,000 Americans. In about half of those who had taken it, the drug melted away the crystalline uric acid deposits that encrusted their joints to cause years of pain, immobility, or disfigurement.

But Sundy also disclosed an unsettling detail: In one clinical trial, patients who got the drug were more likely to develop heart problems than those who didn’t. The day after Sundy’s talk, the stock price of Savient Pharmaceuticals, which developed the drug with Duke scientists, plunged 75%.

That danger signal would disappear in later studies, and the FDA approved pegloticase, under the trade name Krystexxa, two years later. But the small biotech company never recovered. In 2013, Savient was sold at auction to Crealta, a private equity venture created for the purpose, for $120 million.

Two years later, a young company now called Horizon Therapeutics bought Crealta and its drug portfolio for $510 million.

Even at that price, it proved a good deal. Krystexxa brought in $716 million in 2022 and was expected to earn $1 billion annually in coming years.

Although Horizon says it now has 20 drugs under development, in its 15 years of existence it has yet to license a product it invented. Yet the company has managed to assemble a war chest of lucrative drugs, in the process writing a playbook for how to build a modern pharmaceutical colossus.

As the White House and both parties in Congress grapple with reining in prescription drug prices, Horizon’s approach reveals just how difficult this may be.

Horizon’s strategy has paid off handsomely. Krystexxa was just one of the many shiny objects that attracted Amgen, a pharmaceutical giant. Amgen announced in December that it intends to buy Horizon for $27.8 billion, in the biggest pharmaceutical industry deal announced in 2022.

Horizon’s CEO, Tim Walbert, who will reportedly get around $135 million when the deal closes, has mastered a particular kind of industry expertise: taking drugs invented and tested by other people, wrapping them expertly in hard-nosed marketing and warm-hued patient relations, raising their prices, and enjoying astounding revenues.

He’s done this with unusual finesse — courting patients with concierge-like attention and engaging specialist clinicians with lunches, conferences, and research projects, all while touting his own experience as a patient with a rare inflammatory disease. Walbert’s company has been particularly adept at ensuring that insurers, rather than patients, bear the costly burdens of his drugs.

A federal prosecutor in 2015 began examining allegations that Horizon’s patient assistance program had worked with specialty pharmacies to evade insurers’ efforts to shun Horizon’s expensive drugs. A separate probe opened in 2019 over alleged kickbacks to pharmacy benefit managers, companies that negotiate to get Horizon’s drugs covered by insurers. Those investigations appear to be no longer active, Horizon spokesperson Catherine Riedel said. The company this year disclosed a third probe, concerning methods the company allegedly used to get prior authorization of its drugs. Justice officials did not respond to requests for comment on the investigations.

An Injection of Marketing

To help sell its drugs, Horizon blankets specialist physicians with marketing and peer-to-peer appeals. Its payments to physicians for things like consulting, speeches, and meals totaled $8.7 million in 2021, compared with the $10 million it paid them for research, federal records show. By contrast, Seagen, a biotech company of roughly the same size, paid doctors a total of $116 million, with nearly $112 million of that pegged for research. Riedel said Horizon’s marketing and educational approaches were “necessarily unique” because of the challenges of treating rare and neglected diseases.

Walbert launched Horizon in 2008 in the Chicago area by combining and refashioning generic drugs into single pills. Duexis, Horizon’s first drug, is a mixture of generic Motrin and Pepcid. Its Vimovo combines generic Aleve and Nexium. In a 2017 article, a ProPublica reporter described being prescribed Vimovo for a shoulder injury. It cost him nothing, but his insurer was billed $3,252 for pills that together cost about $40 for a month’s supply in generic form. Horizon sold more than $57 million worth of Vimovo that year.

In 2014 and 2015, respectively, Horizon picked up two relatively new drugs that had no generic versions: the immunosuppressant Actimmune and Ravicti, which treats a rare genetic disorder. Soon Horizon was charging more than $50,000 a month for each, placing Actimmmune fourth and Ravicti second on GoodRx’s 2020 list of the most expensive U.S. drugs.

Horizon’s net sales soared from $20 million in 2012 to $981 million in 2016; Walbert’s pay package followed suit, topping an astronomical $93.4 million in 2015 in salary and stock. Stock analysts questioned the long-term soundness of a strategy of simply selling old drugs for mind-boggling prices, but Walbert was using the cash to refashion the company as a rare-diseases franchise.

His approach would make Walbert a darling of pharmaceutical investors and his board, which lavished him with over $20 million in compensation each of the past three years. While most biotechs and startups borrow heavily from venture capital to do science and have no idea how to develop and market a drug, Walbert got cash coming in quickly. “He did it backwards,” said Annabel Samimy, an analyst at Stifel Financial Corp. “Horizon built commercial platforms before they got into drug development.”

Generating “robust sales of what sounded like not very interesting drugs” allowed Walbert “to start a company on not very much,” said Oppenheimer analyst Leland Gershell. All the while, Horizon funded and cultivated the patient advocacy groups that can help lobby for a drug to be approved by the FDA and placed on insurers’ formularies, the lists of drugs health plans cover for patients.

Speaking From Experience

As Walbert and his spokespeople often point out, Walbert and his youngest son suffer from a rare disease, and Walbert also has an autoimmune disease. Walbert won’t name the diseases, but has said he’s taken the anti-inflammatory injectable Humira since 2003 — the year he led that drug’s commercial launch as a vice president at Abbott Laboratories. Humira has become the bestselling drug in history, with about $200 billion in all-time global sales.

In 2014, Walbert moved Horizon’s headquarters to Ireland, which nearly halved its tax rate. A year later it gained control of Krystexxa, and in 2017 it bought, for $145 million, a failing company that produced Tepezza, a drug for thyroid eye disease, which causes unsightly eye bulging and pain.

Tepezza quickly became a blockbuster, with $3.6 billion in total sales in 2021 and 2022. The company conducted additional clinical research on both Tepezza and Krystexxa, but it also spent heavily promoting these and other drugs to specialists who could prescribe them.

All the while it steadily raised prices. Savient put Krystexxa on the market in 2011 at $2,300 per injection. Horizon charges roughly 10 times as much. Six months of Tepezza treatment can run more than $400,000.

Horizon’s publicity emphasized the company’s sensitivity to patients, and its constant contact with disease advocates.

“Our scientists are attuned to the unmet needs of patients, their diagnostic and therapeutic journey,” Bill Rees, Horizon’s vice president for translational sciences, told KFF Health News. “It’s the marrying of the basic clinical science with a focus on the needs of the patient that differentiates us.”

To make sure patients keep using its drugs, clinicians say, Horizon staffers negotiate with insurance carriers, and the company offers drug discounts to lower-income patients while swaddling them with attention from its medical staff.

“Horizon has a nurse talk to each and every patient before every appointment,” said Dr. Brigid Freyne, who treats around half a dozen patients each year with Krystexxa at her Murrieta, California, rheumatology clinic. “The patients who come in here are highly motivated to get their IV. They get the message that it’s very important and they are fortunate to get the medicine.”

None of the manufacturers of her other infusion drugs shower patients with this kind of attention, she said.

While at Abbott, Walbert pioneered direct-to-consumer advertising for specialty drugs like Humira, a trend that aggravated insurers, who anticipated, correctly, that they would soon be shelling out billions for expensive drugs.

Horizon’s marketing plan for Krystexxa includes direct-to-consumer ads aimed at driving patients to specialists. The drug is designed for recalcitrant gout patients, who often have large lumps on their fingers, feet, and kidneys. Many, though not all, are heavy drinkers of beer or soda sweetened with high-fructose corn syrup, which can increase the buildup of uric acid, the cause of gout, said Dr. Robert McLean of Yale University.

While Krystexxa can help patients with advanced gout, the American College of Rheumatology views it as a drug of last resort, with plenty of cheaper, early intervention alternatives available.

“I prescribe it maybe once a year,” McLean said. “From a cost-effectiveness standpoint, it warrants questioning.”

Horizon recently started a publicity campaign addressed to all gout sufferers, urging them to see a rheumatologist or a nephrologist — the specialists it has targeted with Krystexxa educational materials — before the disease does too much harm.

“Horizon would like you to say, ‘Everyone with serious gout should be started on Krystexxa,’” said Dr. James O’Dell, a rheumatologist at the University of Nebraska Medical Center. The Horizon pitchmen he deals with are “nice guys, but we don’t believe that’s the best way.”

The company defends its marketing practices. “We learn what matters most to patient communities and act. This approach has been validated by independent third-party research,” said Riedel.

The Federal Trade Commission said in January it was seeking more information on the Amgen-Horizon merger. Sen. Elizabeth Warren (D-Mass.), citing high prices for Horizon and Amgen drugs, urged the agency to nix the deal.

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
KHN

@jrovner

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Julie Rovner is chief Washington correspondent and host of KHN’s 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.

Several states have begun the herculean task of redetermining how many of an estimated 85 million Americans currently receiving health coverage through the Medicaid program are still eligible. To receive federal covid-19 relief funds, states were required to keep enrollees covered during the pandemic. As many as 15 million people could be struck from the program’s rolls — many of whom are still eligible, or are eligible for other programs and need to be steered to them.

Meanwhile, the trustees of the Medicare program report that its Hospital Insurance Trust Fund should remain solvent until 2031, three years longer than it projected last year. That allows lawmakers to continue to put off what are likely to be politically unpleasant decisions, although they will eventually have to deal with Medicare’s underlying financial woes (and those of Social Security).

This week’s panelists are Julie Rovner of KHN, Alice Miranda Ollstein of Politico, Amy Goldstein of The Washington Post, and Rachel Roubein of The Washington Post.

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Amy Goldstein
The Washington Post

@goldsteinamy

Read Amy's Stories

Rachel Roubein
The Washington Post

@rachel_roubein

Read Rachel's stories

Among the takeaways from this week’s episode:

• The Medicaid “unwinding” is likely to strip health coverage not just from millions of people who are no longer eligible for the program, but also from millions of people who still are. States are supposed to take their time reevaluating eligibility, but some are rushing to disenroll people.
• Another complication in an already complicated task is that many Medicaid workers hired during the pandemic have never actually redetermined Medicaid eligibility for anyone, because states had been required to keep people who qualified on the program.
• Grimly, some of the extra years of solvency gained in the Medicare Hospital Insurance Trust Fund are a result of pandemic deaths in the 65-and-older population.
• The Department of Health and Human Services has issued payment rules for Medicare Advantage Plans for 2024. The agency ended up conceding at least somewhat to private plans that for years have been receiving more than they should have from the U.S. Treasury. The new rules will work to shrink those overpayments going forward, but not try to recoup those from years past.
• The situation with “first-dollar coverage” of preventive services by commercial health plans is becoming a bit clearer following last week’s decision in Texas that part of the Affordable Care Act’s preventive services mandate is unconstitutional. Judge Reed O’Connor (who in 2018 ruled the entire health law unconstitutional) issued a nationwide stay on coverage requirements from the U.S. Preventive Services Task Force, saying it is a volunteer organization not subject to the oversight of the Health and Human Services secretary. The federal government is already appealing that ruling.
• But O’Connor’s decision is not quite as sweeping as first thought. He banned required coverage only of the task force’s recommendations made after March 23, 2010 — the day the ACA was signed into law. Earlier recommendations stand. O’Connor also did not strike preventive services recommended by the Health Resources and Services Administration and the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices, since those agencies are overseen by an official appointed by the president and confirmed by the Senate.
• In abortion news, the liberal candidate for a Supreme Court seat in Wisconsin, Janet Protasiewicz, defeated her conservative opponent to switch the majority on the court from 4-3 conservative to 4-3 liberal. That ideological shift is likely to preserve abortion rights in the state, and possibly stem the ability of the GOP legislature to continue to draw maps that favor Republicans.
• Meanwhile, states in the South are continuing to pull back on abortion access. The Florida legislature is moving rapidly on a bill that would ban the procedure after six weeks of pregnancy, while in North Carolina, a single legislator’s switch from Democrat to Republican has given the latter a supermajority in the legislature large enough to override any veto of the Democratic governor, Roy Cooper.

Also this week, Rovner interviews Daniel Chang, who reported and wrote the latest KHN-NPR “Bill of the Month” feature about a child who had a medical bill sent to collections before he started to learn to read. If you have an outrageous or exorbitant medical bill you want 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: New York Magazine’s “The Shared Anti-Trans and Anti-Abortion Playbook,” by Irin Carmon.

Alice Miranda Ollstein: The Los Angeles Times’ “Horrifying Stories of Women Chased Down by the LAPD Abortion Squad Before Roe vs. Wade,” by Brittny Mejia.

Rachel Roubein: KHN’s “‘Hard to Get Sober Young’: Inside One of the Country’s Few Recovery High Schools,” by Stephanie Daniel of KUNC.

Amy Goldstein: The Washington Post’s “After Decades Under a Virus’s Shadow, He Now Lives Free of HIV,” by Mark Johnson.

Also mentioned in this week’s podcast:

• Stat’s “Denied by AI: How Medicare Advantage Plans Use Algorithms to Cut Off Care for Seniors in Need,” by Casey Ross and Bob Herman.
• ProPublica’s “How Cigna Saves Millions by Having Its Doctors Reject Claims Without Reading Them,” by Patrick Rucker, Maya Miller, and David Armstrong.
• The Atlantic’s “There’s No Such Thing as a Casual Interaction With Your Doctor Anymore,” by Zoya Qureshi.
• Politico’s “Democrats Want to Restore Roe. They’re Divided on Whether to Go Even Further,” by Alice Miranda Ollstein and Megan Messerly.

Click to Open the Transcript

Transcript: The ‘Unwinding’ of Medicaid

KHN’s ‘What the Health?’Episode Title: The ‘Unwinding’ of MedicaidEpisode Number: 292Published: April 6, 2023

[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]

Julie Rovner: Hello and welcome back to KHN’s “What the Health?” I’m Julie Rovner, chief Washington correspondent at Kaiser Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, April 6, 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: Rachel Roubein of The Washington Post.

Rachel Roubein: Good morning.

Rovner: And we welcome back to the podcast, after a bit of a break, Amy Goldstein, also of The Washington Post.

Amy Goldstein: Good to be back.

Rovner: Later in this episode, we will have the latest KHN-NPR “Bill of the Month” interview, with my colleague Daniel Chang. This month’s patient had a medical bill sent to collections before he was old enough to read. Impressive. But first, this week’s news. We’re going to start this week with Medicaid. During the pandemic, as most health policy nerds know, the federal government required states to keep anyone who qualified for the Medicaid program on the rolls, even if they became ineligible. But as of April 1, last week, states were free to start, quote, “unwinding” that Medicaid coverage. Now, states are facing the daunting task of determining who’s still eligible for the program and who can be removed and how those who are losing that Medicaid coverage can be steered to other programs, which they might be eligible. This is, to quote then-Vice President Biden when the ACA got passed, a BFD. So, what are some of the potential problems here? We’re talking about a lot of people, right, Amy? You wrote about this.

Goldstein: We are talking about a lot of people. It’s unclear how many people are going to lose Medicaid. But if you go by the Biden administration’s estimates, they’re thinking perhaps 15 million people out of 85 million people who are on Medicaid. So that’s a lot of low-income people who could end up without insurance or scrambling to see if they can find other insurance if they know to do that. And obviously, Medicaid is a joint federal-state enterprise, and states are the ones that carry it out. States set their eligibility rules to a large extent, and states have each had to write and submit to the federal government a plan for how they’re going to go about this unwinding. And the issue is that, with so many different plans, there are some things that CMS, Centers for Medicare & Medicaid Services, want states to do — for instance, to try as much as possible to check whether people are eligible by trying to match up with other records, say, from food stamps or wage records that the states might have.

Rovner: So basically, don’t count on them responding to a letter that says you need to reestablish your eligibility for this program.

Goldstein: Exactly. But how assertively states are going to 1) do that, and secondly, how hard they’re going to try to reach people in how many different ways — time will tell.

Rovner: Yeah, I’ve noticed. I mean, some states are doing things like sending out special colored envelopes. It’s Easter week; we’ve got robin’s-egg blue envelopes. I think that was Massachusetts. Somebody’s sending out pink envelopes and magenta envelopes. But, you know, Alice, you covered when they were doing the Medicaid work requirements, and Arkansas discovered that the problem wasn’t so much that people weren’t working; it’s that people literally had trouble navigating the reporting system. And that’s kind of what we’re looking at writ large here, right?

Ollstein: Yeah. And the people who are most likely to be flagged for removal, they could be very low income. They could have unstable housing, move around a lot, stay with family. They might not receive mail at the address that was on file a few years ago. They might not have reliable phone or internet access to be reachable in those ways. So, as Amy said, it really makes a difference how much and what kind of an effort states make to let people know this is even happening. Because as we saw with work requirements and even just, like, the regular pre-pandemic periodic Medicaid eligibility checks, people fall through the cracks all of the time for reasons that are not their fault at all. And so, with this all happening at once, with so many more people than normal, the risk of that just grows.

Goldstein: And if I could just throw in one more complicating factor: If you think about what’s happened to workforces over the pandemic, a lot of the Medicaid agencies in the states have lost workers, and there are shortages in a lot of places. And people who’ve been hired in the last couple years have never had to do renewals or, as the lexicon goes, redeterminations before. So what’s going on inside the places where these decisions are going to have to get made for all these people is a bit of a problem in many, many states.

Roubein: I think how I’ve been sort of thinking about it in my mind is there’s 1) that issue of ensuring people who are still eligible don’t lose coverage. And then there’s the other issue of people who aren’t eligible for Medicaid anymore, but having states and navigators and groups help them find coverage elsewhere, whether that’s on the exchange, or some people might actually be now eligible for employer insurance. And some of that breakdown from that 15 million from that Department of Health and Human Services report — they had projected 6.8 million will lose Medicaid coverage despite being still eligible and that roughly 8.2 million people expected to leave the program because they’re no longer eligible for the program.

Rovner: And before somebody writes me and asks … [unintelligible] … I know states weren’t absolutely required to keep these people on the rolls, but they were required to keep these people on the rolls if they wanted the extra pandemic money. So every state did it. So every state basically has this task ahead of them to try to figure out how it works, and we shall keep tabs on this. I want to turn to Medicare. Last week, we got the annual report of Medicare’s trustees, which found, a little unexpectedly I think, that the program’s Hospital Insurance Trust Fund should continue to be able to pay all of its bills until 2031. That’s three years longer than it was projected to last year. Kind of grimly, apparently some of the improvement is due to many older people on Medicare dying during the covid pandemic. But this also does take some pressure off of lawmakers to fix what ails Medicare financially, right? They tend to only act when it’s within this four- or five-year window.

Ollstein: I would say yes and no. I haven’t seen a huge shift in the talk on Capitol Hill in response to this report. It’s only pushing back the deadline a few years. And it’s true, Congress only acts when there’s an imminent crisis and sometimes not even then. But I think the people really saying, “Hey, we need to do something,” are not going to stop saying that because of this.

Rovner: I’m going to put that on a T-shirt: Congress only acts when there’s an imminent crisis and sometimes not even then.

Roubein: Oh, yeah. I mean, I think that’s frustrated budget experts because Congress isn’t particularly doing anything in terms of financial solvency. And I mean, it’s really political, as we’ve seen — Biden during his State of the Union and how he got Republicans to talk about basically his ad-libbed Medicare conversation. But it’s kind of this tradition.

Rovner: “We’re not going to touch Medicare or Social Security.”

Roubein: Yeah. Off the table, this kind of tradition of “Mediscare.” No one wants to kind of be putting their foot out there with a proposal that would change Medicare.

Goldstein: This looming insolvency of Medicare is not at all a new problem. And ducking the problem is not a new phenomenon. Julie, you may remember, along with me, in the late 1990s, as a result of the big Balanced Budget Act of 1997 — this goes back a way — Congress created a bipartisan commission on the future of Medicare, and it was led by members of Congress. It was a big deal, it got a lot of attention, and it tried for many, many, many months to map out the future of Medicaid. And in the final analysis, it just dissolved in disagreements.

Rovner: Yeah, Medicare, not Medicaid,

Goldstein: Yes, Medicare.

Rovner: They did recommend a drug benefit that did eventually come to pass, but —

Goldstein: That’s right. But that was not the solvency solution.

Rovner: No, it was not. And I will say, my bookcase here at home is littered with reports of these various commissions that Congress punted to. It’s like, well, you guys solve it. And of course, no one ever has. We are still at this. But obviously this year, Rachel — you kind of hinted at this — some of this is going to come to a head because it’s part of the debt ceiling debate, that Congress is going to have to do something about the debt ceiling, lest the U.S. actually default on its debt. Republicans want to have spending cuts as part of this. They had said they wanted to do something about Medicare as part of this. Is there any update on that debate? We still seem to be in the “after you, Alphonse” portion of this, with both Biden saying he’s ready to talk to the Republicans and Republicans saying they’re ready to talk to Biden and nobody really talking to each other yet.

Roubein: Yeah, I mean, I think both sides are pretty dug in here at the moment. McCarthy a month or two ago had said no cuts to Medicare and Social Security. And Kevin McCarthy, I think it was the end of last month, had demanded a meeting with Biden. And then, you know, kind of the Biden team came back and said, “OK, well, we put out a budget. So, you know, Republicans need to produce their budget document.” And, you know, that’s kind of the political argument that we’ve been hearing for a little while here.

Rovner: Well, to paraphrase Alice, this crisis is about to get imminent, but not quite.

Goldstein: Before we leave Medicare, let me just make a couple more points. One is that this affects hospital care. So it’s not all parts of Medicare. And when the insolvency date comes — as you say, now projected to be 2031 — it’s not as if the program is going to be unable to pay any of its bills. This year its trustees said that it’s going to be able to pay 89% of the hospital benefits to which Medicare are entitled. The other point is, I mean, there’s a long-standing reason why politicians have been reluctant to fix something despite the many, many, many years of cries of, “We better fix it soon because it’s going to be harder to fix the longer we wait.” And that is that, older Americans — I mean, to state the obvious — are a very active voting bloc and they do not like the prospect of federal benefits being eroded. So there is politics behind why both parties have been reticent.

Rovner: Yes, there’s four ways to make Medicare solvent. You can pay providers less, which is what they usually end up doing, and they fight back. You can make the benefits less, either by having people wait longer to get on them or having to pay more for them. Or you can require the taxpayers to pay more money. So everything is kind of unpleasant here. And I think that’s why Congress would just as soon not do this. But while we still have Medicare teed up, we talked at some length a few weeks ago about Medicare Advantage plans, the private alternative to the government fee-for-service Medicare, and how those plans are technically being overpaid, which has prompted quite the TV advertising campaign from the plans, which I suspect very few people understand. There’s just all these sort of old people saying, “They’re going to cut our Medicare.” So the Department of Health and Human Services finally issued its Medicare Advantage payment rule for next year, and it appears to split the difference, stopping plans from continuing to overstate how sick their patients are, which is what’s responsible for a lot of the overpayments. But it limits the ability of the government to look back to recoup some of those overpayments that have been made. Is that basically a one-sentence explanation of what they’ve done here?

Roubein: The industry waged a pretty fierce battle here, but they phased in their plan. So essentially the Centers for Medicare & Medicaid Services had proposed switching to a more updated coding system, which included eliminating approximately 2,000 codes. And insurers claimed that this could lead to substantial pay cuts. The administration fiercely disputed that. But they did, as you say, kind of split the difference, in terms of saying, “OK, well, we’re going to phase in these changes over three years,” which CMS officials and other experts have said is something that they kind of tend to do when there is controversial policy.

Rovner: Right. When they don’t want to irritate anybody too much, although I did notice that there’s also some rules about deceptive advertising for Medicare Advantage plans. So maybe it’ll make me stop screaming at the TV when these ads come on. Moving along, last week we were able to bring you the breaking news about the preventive care ruling out of Texas from federal District Judge Reed O’Connor. What else have we learned since those first breaking hours? I know the decision doesn’t cover preventive care recommended by groups that report directly to someone in the federal government who is appointed by the president and confirmed by the Senate — at least it doesn’t at the moment. But it only limits preventive care that’s recommended by the U.S. Preventive Services Task Force. But it could still be expanded at the appeals level, right?

Goldstein: That’s right. This affects a lot of people: everybody with private health insurance, which is estimated by federal health officials to be about 150 million people. It’s not killing all free preventive services. It’s ending the mandate that they’re provided at no cost to consumers for those preventive services that the U.S. Preventive Services Task Force has either defined or updated since the Affordable Care Act was passed in 2010. So that leaves intact a few important categories of things: 1) earlier preventive services, like mammograms, which were required to be covered for free before, are still intact. It also leaves intact services that are required by two different parts of HHS. Within HRSA [Health Resources and Services Administration], they have jurisdiction over women’s health services, so that’s why things like contraception are not touched by — at the moment, as you say — by this court ruling. And similarly, an advisory body to the CDC, which has jurisdiction over vaccinations, whether it’s childhood vaccinations, covid vaccinations — so those aren’t touched. But what’s happened in the past week is, predictably, the day after Judge O’Connor — who, as I’m sure you discussed last week, was the same judge who a few years ago held that the entire ACA was unconstitutional and was ultimately overruled by the Supreme Court — anyhow, O’Connor last week said this applies nationwide, not just to places where the plaintiffs are. And the next day, the Biden administration, the Justice Department, very quickly filed a notice of appeal. It was one paragraph. It wasn’t laying out the appeal, but it was getting on the record that the administration is going to appeal to the 5th Circuit Court of Appeals, which is a conservative circuit based in New Orleans that hasn’t been entirely friendly to the ACA in the past. What the administration did not yet do is say that it wants to stay the judge’s ruling, but it’s very likely that that’s going to be requested as well.

Rovner: Even if the judge’s ruling doesn’t get stayed, it’s likely to have very little immediate impact, right? Because insurance contracts are already kind of set for the year. If insurers wanted to stop covering this — and they’re probably not going to stop covering it — but if they wanted to make it — institute copays or say this is part of your deductible — they’re likely not to do that until the next plan year, right? Alice, I see you nodding.

Ollstein: Yeah, but that isn’t uniform. So the folks I talked to said that, while most plans are baked in for the year and what we really should be looking for is when the new 2024 things start coming out in the summer into the fall, that’s what we should be watching in terms of, you know, what could change there. But that isn’t uniform. It’s possible that some plans could change earlier. There are all different kinds of possibilities, but I was kind of surprised to see the Biden administration not rush to file an appeal right away. They filed a notice of appeal, but they haven’t actually filed the appeal yet or asked for the stay, but I think that is stemming from this not being seen as an imminent threat to people’s health coverage. The piece of it I’ve really been interested in is the impact on HIV and STDs, because, like Amy said, a lot of the basic cancer screenings and other things will continue to be protected in some form because they were recommended prior to 2010. But a lot of the STD and HIV stuff is a lot more recent, so it’s a lot more vulnerable to being rolled back, and plans and employers — for a lot of these things — covering preventive services for free with no out-of-pocket costs is good; it’s really cheap to cover and it prevents a lot of expensive care down the road. But that’s sort of less true with some of these things. PrEP, the HIV prevention drug, is really expensive. A lot of the lab costs for STD testing are still expensive. And so you could see folks’ plans and employers wanting to save money by shifting some of those costs to patients. And public health experts are worried about that.

Rovner: I think another quirk of this that we didn’t realize right away is what the decision says is that it only affects USPSTF rulings that were made after the date that the Affordable Care Act was signed, March 23, 2010. But what that ends up doing is leaving in effect prior recommendations that are not necessarily up to date. So you could end up rolling back to things that medical experts no longer think is the appropriate interval or type of preventive service being required. And then, of course, you have the insurers who are going to be required to put out their bids for next year in the coming months. Now, this is not the first time insurers have had to stab in the dark at what they think the rules are going to be and how much they’re going to want to charge for that. So we’re having yet another round of insurers kind of having to throw their hands out and throw darts against the wall, right?

Goldstein: Yes. And this — Alice mentioned employers are a big constituency in this. There is some survey evidence, I mean not terribly systematic survey evidence, but a little bit of survey evidence that was done last fall with this case pending, that showed that most insurers, a high, high proportion of insurers, wanted to keep these benefits. So that may influence, as you’re saying, Julie, what the bids come in looking like while this is all still kind of murky.

Rovner: Yeah, we know it’s popular and we know in most cases it’s relatively cheap. So one would assume that this decision might not have too much impact, although as I sort of alluded to, and I haven’t heard whether this is happening yet, the plaintiffs could also appeal because they didn’t get everything they wanted. They also wanted to have the women’s health stuff out of HRSA and the immunization stuff out of CDC stayed as, you know — or the requirements gotten rid of, and the judge did not do that. So one presumes they could also appeal and we would see what happens at the 5th Circuit Court of Appeals. But I think everybody assumes at this point that it’s going to end up at the Supreme Court, yes? I see nods all around. Oh, boy. I can’t wait. All right. Well, let’s turn to abortion. The big abortion news this week comes from Wisconsin in a race for state Supreme Court, of all things, which was supposed to be nonpartisan or technically was nonpartisan. Still, the strong showing by the judge who was associated with the liberal side of the ledger could have some major impact, right? This was expected to be a very close race, and it really wasn’t.

Ollstein: No, it wasn’t close at all. The progressive candidate really took it away, and the campaign really heavily focused on abortion. This is because the state’s ban, which has been in place, you know, since long before Roe was enacted, is likely to come before the court. But the implications go way beyond that. This could change how the legislature makeup is in the future because of challenges to the gerrymandered state maps. That could, you know, open the door to Medicaid expansion and all kinds of other things, you know, related to abortion, related to all kinds of things. Because right now, you know, you have a Democratic governor who is on his second term who can’t really do very much because of the state legislature. So this could have tons and tons of repercussions going forward in Wisconsin.

Rovner: And we should point out, because I meant to say, this election flipped the state Supreme Court from 4-3 conservative to 4-3 liberal.

Roubein: It was really interesting because you saw the liberal candidate, Janet Protasiewicz, really leaning into abortion rights. And, you know, obviously she’s a judge, but in multiple ads from her campaign it said, you know, women should have the freedom to make their own decisions on abortion. That was a quote from the ads. And now, you know, kind of, she was … [unintelligible] … from the other side, like, can she be impartial when she rules? And, you know, she said like, “No, I have not promised any of these major groups, Emily’s List, etc., that are backing me, how I will rule.” But, you know, we did see the judge, as she called it, her personal beliefs and be really open about that.

Rovner: And her opponent was also pretty open about it, too. He was a very conservative guy who was pretty much promising to go down the line with what the conservatives wanted. Alice, you were about to say something.

Ollstein: Yeah, well, it’s been fascinating now that we’re a day out from the election results. There is sort of a freakout going on on the right about it and about what it means for abortion specifically. And you’re seeing a lot of very prominent people on the right publicly saying, “We have a message on abortion that voters don’t like and we need to change it right now.” People are saying that the right needs to moderate and stop pushing for near-total bans with no exceptions, which is going on in a lot of states right now. That debate was already happening on the right, but I think this just pours fuel on it. I think with the Florida governor about to be confronted with whether or not to sign a six-week ban, this really is going to squeeze a lot of people.

Rovner: Yes, I feel very smug about my extra credit story from last week, which was the Rebecca Traister long read in New York Magazine about how Democrats have underestimated how winning an issue abortion may be. And I saw her sort of also smugly tweeting late Tuesday night. It’s like, “See, I’m telling you this.” While the Upper Midwest may be getting more supportive of abortion rights, also this week Michigan Governor Gretchen Whitmer formally signed the repeal of the state’s nearly hundred-year-old pre-Roe ban. But in the South, the trend is going the other way, as you mentioned, Alice. Florida’s legislature is moving quickly on a six-week abortion ban, while in North Carolina a Democratic state legislator who ran on abortion rights is switching parties, giving the Republicans there a supermajority that will let them override the Democratic governor’s vetoes. Are we looking at, fairly imminent, abortion being unavailable throughout the South?

Roubein: I think Florida, North Carolina, Nebraska is also considering a similar limit — were all states that in the two months after Roe v. Wade was overturned — were states that saw an increase in abortions. I think North Carolina is particularly interesting because in early February all the Democrats had signed on to a bill to codify Roe v. Wade. But I was reporting at the time with my colleague Caroline Kitchener on this, and she talked to one of the Democrats there, who said, well — after he signed on to it — like, “Well, that doesn’t preclude me from voting for abortion restrictions.” He had said this is, quote, “This is still the first quarter.” So I think even before we saw the state Democrat switch to Republican, you know, what happened in North Carolina where there is a Democratic governor was an open question even beforehand.

Rovner: Yeah, this reminds me of Virginia trying to expand Medicaid, and there’s constantly this sort of one member, another member. I mean, it literally didn’t happen until the last vote allowed it to happen, I think.

Ollstein: Yeah. I mean, this also really puts a spotlight on the tactic of doing a ballot referendum on abortion, because —

Rovner: That was my next question, Alice.

Ollstein: Ta-da.

Rovner: Tell us about your story about that.

Ollstein: The relation to this is, yes, you have a lot of Republican lawmakers and some Democrats, or some former Democrats, as we’ve seen, who are moving very aggressively to continue to pass abortion restrictions, whether it’s total bans or something short of that. But the referendums often show that that doesn’t necessarily reflect all of the Republican electorate, which is not always aligned with their representatives on this issue. And based on the results of the six referendums last year in which the pro-abortion-rights side won all six out of six, folks are hoping to get that going in more states this year, and it’s already underway — not as much in the South, and not every state can do a referendum legally. It varies state to state what the rules are, but where it’s possible, people are trying to do it. My story this week reported on an internal fight on the left about how to go about it. So most of the referendums that are moving forward in these red and purple states right now, trying to get on the ballot in the next few years, say that basically they would only restore the protections of Roe v. Wade, so only protect abortion up to the point of fetal viability. And you have a lot of folks — you know, medical groups, activists — saying, Why are we doing that? Why are we sort of pre-compromising? We keep seeing over and over at the ballot box this is a winning issue; why aren’t we being bold? Like the right is going for total bans. Why aren’t we going for total legalization? But the folks who want the viability limit in there are saying, Look, we want to put something forward that we know is going to pass. We’ve done research and focus groups and polling. You know, this is the way we think is smartest to go. Plus, you know, the vast majority of abortions take place prior to viability anyways. And right now we have no abortion at all. So isn’t legalizing most better than nothing? And so it’s a really interesting debate.

Rovner: It’s literally the mirror image of the debate that’s going on on the right, which has been happening over the years. It’s just that it’s all kind of, you know — now that we’re in this sort of odd place — it’s all magnified. So, you know, the right is trying to decide between do we restrict abortion a little or do we just allow, you know, the end of Roe v. Wade and states to make up their mind? Or do we go for a national ban? Where the left is saying, do we just want to bring things back to where they were when we had Roe, or do we want to go further and allow and basically have public funding and sort of other things to assure what they call reproductive justice? So obviously, this fight is going to continue on both sides.

Goldstein: Let me just say that this tension between the electorate and lawmakers in fairly conservative states is a real echo of what has happened over the years with Medicaid expansion, when there have been several states in which legislators were really dug in that they weren’t going to expand Medicaid under the ACA, and public ballot initiative and it expanded. So it’s sort of turning to the exact same tactic.

Rovner: That’s right. And again, in a lot of these Republican states, the voters were very happy to expand Medicaid. So that, yes, we’ve seen this particular book before. Well, before we go, there were a couple of stories that got kicked over from last week when we had our breaking news. But I really wanted to mention about artificial intelligence in health care or at least in health insurance. One story from ProPublica details how the health insurance giant Cigna is using an algorithm to reject thousands of claims for care that’s kind of between cheap and very expensive, and then letting medical director physicians basically batch-approve those rejections on the theory, likely correct, that even if most of the care is medically appropriate, most people won’t bother to appeal a bill of just a couple of hundred dollars and will just pay it. The other story, from Stat News, is kind of strikingly similar. It’s about a Medicare Advantage plan that’s using AI to pinpoint the exact moment it can stop paying for some care, particularly expensive care, in a hospital or nursing home. Now, it would appear that the Medicare Advantage case is more egregious because it seeks to actually cut off care, where Cigna is just denying payment after the fact. But it seemed to make it pretty clear that while a) it might improve care and save money, sometimes it’s just saving money for people other than the patients, right? That’s what it certainly looks like in these cases.

Ollstein: I mean, as we’ve seen with other uses of algorithms, algorithms reflect the values of the people creating the algorithms. And you say, “Oh, it’s a robot, it’s completely impartial.” Why are there racial discrimination implications then? But we do keep seeing this and it’s like, it was created by humans, it’s going to have human failings and require oversight and accountability mechanisms.

Rovner: Yeah. And finally, one more story from the “be careful what you wish for.” There’s a story in The Atlantic this month about the downside of telehealth that at least some of us saw coming. Now that doctors can charge for and be reimbursed for virtual care by video, more and more doctors are starting to charge for other forms of communication that used to be free, like telephone calls and emails. Now, lawyers have long charged for phone calls advising clients. I always kind of wondered why doctors didn’t. I guess I have my answer now. Is this another case of anything — that any technology that’s good is probably also going to have its downsides?

Goldstein: Well, it’s also a reflection that fewer and fewer doctors work on their own. They’re working for health systems that have the bottom line in mind, which is not to say they only have the bottom line in mind, but they’re less autonomous in terms of their pricing policies.

Rovner: And yeah, are being asked to see more patients, so it takes more time to actually, you know — one of the interesting things in this in the story was that a phone call may only be five minutes for you, but it’s probably 20 minutes for your doctor who has to go make a notation in your chart and maybe call in a prescription. And it’s more than just the quick phone call for the doctor. I think this is something that used to be a courtesy and now it’s just a charge. All right, well, that is this week’s news. Now we will play my “Bill of the Month” interview with Daniel Chang and then we’ll come back with our extra credit. We are pleased to welcome to the podcast Daniel Chang, who reported and wrote the latest KHN-NPR “Bill of the Month.” Daniel, welcome to “What the Health?”

Daniel Chang: Hi, Julie. I’m glad to be here.

Rovner: So this month’s patient wasn’t even old enough for kindergarten when he got a medical bill sent to collection for care he didn’t even receive. Who is this kid? Why did he need medical care? And this is very impressive, I’ve got to say.

Chang: So, at the time — this happened last Memorial Day weekend — Keeling McLin was his name, and he was 4 years old. And according to his mom, Sara McLin, who’s a dentist in central Florida, she had just finished cooking something on the stove and Keeling had gotten up to get something. And on his way down he put his hand on the hot stove. That was pretty painful, from what she described. And so she took him to the emergency room for care.

Rovner: First she took him to urgent care, right?

Chang: Well, it was a stand-alone emergency room, so it’s one of those hybrid ones, I guess you might call it. No inpatient, of course.

Rovner: And therein is about to be our problem. So Mom did everything right here, right? She made sure that she went to a facility in her network, and then they sent her off to another hospital. But the problem is, where is the first visit, right?

Chang: Correct. The first visit was a problem. It was part of the HCA system. And they didn’t have, I guess, the resources there to treat Keeling’s burn. So they referred him to a HCA hospital with a burn center, which was about a 90-minute drive away from the stand-alone ER.

Rovner: And they managed to deal with the burn, right? The kid’s OK.

Chang: They did. He’s OK. It turned out to be not as bad as suspected. And Sara McLin told me that they drained his blisters, wrapped his hand, and sent her home with instructions on how to care for it. And she didn’t think about it again.

Rovner: Until she got the bill.

Chang: Exactly.

Rovner: This gets pretty Kafkaesque, doesn’t it? What were the bills here?

Chang: So, the first bill that she received was from the physician provider group; Envision Healthcare employed the physician in the stand-alone emergency room. That bill was for about $72. She called her insurer, which was UnitedHealthcare, and they told her that — essentially not to worry about it. And the bill itself is labeled as a surprise out-of-network bill, although when I reached out to Envision Healthcare, they said that it was not, it was part of her cost sharing. In any case, that bill didn’t cause her any problems. Shortly after that, she got a bill from the stand-alone emergency room, and this bill was considerably higher, although her share was about $129. But the reason that she was a little confused about this is because she said that the physician at the stand-alone emergency room told her, “You know what, this won’t even count as a visit because we can’t do anything for him.” So she left with that thought. And later on she said she wished she had gotten that in writing, but that was the problem bill.

Rovner: Yes. So what eventually happened?

Chang: So what eventually happened is that the bill was in Keeling’s name and it did not include his mom or his dad on there. It was just simply to Keeling. And for reasons that HCA didn’t explain, and we can’t explain, Envision got his insurance information correct, but HCA had him as an uninsured person responsible for his own bills. And it’s odd because his date of birth is on that bill. And you would think that somewhere along the line someone would catch that. But they didn’t. And so what happened is that Sara fell into this sort of twilight zone where she couldn’t speak to anyone about the bill because it wasn’t in her name. And so, according to her conversations with folks at HCA and later at Medicredit, they couldn’t talk to her because her name wasn’t on the bill. So this was the one thing that she was trying to get resolved. And she tried for months and got nowhere, which is when she reached out to us.

Rovner: And as you point out, that Medicredit is the collections agency, right? This 5-year-old’s bill got sent to collections.

Chang: That’s correct. That just kind of compounded the frustration because Sara had worked for a couple of months to get HCA to add her name onto the bill. And she had even written them a letter, she says, and they told her they were going to do it and she was waiting for the bill. But then the next letter she got was from the collection agency, for the same amount and with the same problem. Her name wasn’t on the bill. So when she called the collection agency to try to dispute the bill, they told her, “Sorry, we can’t talk to you. You’re not the authorized representative on this bill.”

Rovner: It feels like the biggest problem here is not so much that mistakes happen. They do. Obviously, they’ve happened a lot in our “Bill of the Month” series. But they are so very hard to fix — I mean, even when you say, “Look, this is a 5-year-old.”

Chang: I agree. It sounded so frustrating. And I think, ultimately, of course, that’s why she reached out to us. But she tried repeatedly and not only did she tell me this, but the bills that she provided to us had a lot of her handwritten notes in the margins and the dates that she had spoken to individuals. And it just — it’s really hard. None of the experts that we spoke with could understand why HCA couldn’t just simply fix this before they sent it to collections. And HCA acknowledged the error, and they apologized to her. And they ultimately canceled the debt. But the system clearly doesn’t seem to work in favor of patients when you have these sort of odd complications that really they didn’t have anything to do with what she owed or what they said she owed; it was all a matter of identification.

Rovner: So is there anything she could have done differently? I’m not saying, you know — she obviously couldn’t prevent the mistake from being made. But was there some better way for her to try to navigate this?

Chang: You know, neither the insurer or the providers gave us an explanation of what she could have done differently or what individuals who find themselves in a similar position could do. And so I think she did everything that she reasonably could, short of perhaps hiring an attorney? I’m not sure; maybe that would have worked, but you shouldn’t have to go to that length and that cost just to get your name on your minor child’s bill so that you can take care of it and speak to the people who say you owe them the money. It’s just — it’s crazy.

Rovner: And she’s a dentist, so she’s a health care professional. She obviously had some, you know, knowledge of the system and how it works. And even she had trouble —

Chang: That’s correct.

Rovner: — getting it done. So I guess basically the lesson is, watch your bills closely and be ready to take action.

Chang: And potentially, when I think about this situation, ensuring perhaps that the stand-alone ER had all of the information, but I can also see where she was told that, “Look, this doesn’t even count as a visit. We couldn’t treat him here. You’ve got to take him to the burn center. We won’t count this as a visit.” I think she left comfortable in that knowledge, only to realize later that, oops, it wasn’t that way. Yeah.

Rovner: Get it all in writing.

Chang: Yes.

Rovner: Daniel Chang, thank you so much.

Chang: You’re very welcome. Thanks for having me on.

Rovner: OK, we’re 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 khn.org and in our show notes on your phone or other mobile device. Alice, why don’t you go first this week?

Ollstein: Sure. So I picked a really fascinating history piece from the LA Times by Brittny Mejia, and it’s about what law enforcement’s role was pre-Roe v. Wade in cracking down on illegal abortions. All abortions were illegal. And it just really vividly describes how cops would conduct raids on doctors who were operating clandestinely and performing abortions, you know, the tactics they would use. It was just really fascinating. And so I think it’s worth resurfacing this history, thinking, OK, so abortion is illegal again; what does enforcement look like? What could enforcement look like? And this is a very disturbing picture of what it used to look like.

Rovner: Amy, you have a story that’s kind of related to Alice’s story, also looking at history, but updated.

Goldstein: That’s right. I chose a story by my colleague at the Post, Marc Johnson, with the headline, “After Decades Under a Virus’s Shadow, He Now Lives Free of HIV.” And it’s an interview with one of only five people in the world who’ve had stem cell transplants that have cured them of cancer but also gotten rid of any evidence of HIV in their bodies. And it’s not a hugely long story, but it’s just a beautiful trajectory reminding us of what the early bad world of AIDS was, with this individual’s friends dying all around him in San Francisco, to the decades when he was on a lot of AIDS drugs, and suddenly being unexpectedly liberated from all that. It’s a good read.

Rovner: Yeah, it is. Rachel.

Roubein: My extra credit is titled “‘Hard to Get Sober Young’: Inside One of the Country’s Few Recovery High Schools,” by Stephanie Daniel of KUNC. And basically it takes the reader inside a Denver recovery high school, which mixes high school education with treatment for drug and alcohol addiction. And so this high school in Colorado — it’s one of 43 nationwide, and she kind of details the history of recovery high schools, which, the first one opened up in Silver Spring, Maryland, in 1979. And she also kind of goes through what I thought was interesting, which was kind of, the challenges of recovery high schools, most being publicly funded charter or alternative schools, and they have a higher ratio of mental health and recovery personnel, so there’s really not a ton of them nationwide.

Rovner: I had never heard of them until I saw this story. It was really interesting. Well, for the second week in a row, my story is from New York Magazine. It’s by Irin Carmon, and it’s called “The Shared Anti-Trans and Anti-Abortion Playbook.” And she points out that not only are there many of the same people fighting abortion who are also fighting trans health care, but there’s also a similarly long-term strategy, as Irin wrote. They’re focusing on youth first, because they understand that it’s much harder to convince the public to restrict the lives of adults. As someone who’s spent years covering the fight over whether or not teen girls should be able to access sex education, birth control, or abortion, it does feel familiar. OK, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review. That helps other people find us too. Special thanks, as always, to our ever-patient producer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m @jrovner. Rachel?

Roubein: @rachel_roubein.

Rovner: Alice?

Ollstein: @AliceOllstein.

Rovner: Amy?

Goldstein: @goldsteinamy.

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

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KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Rep. Lloyd Doggett (D-Texas) said he decided to introduce a bill in the House late last week after KHN’s reporting revealed what he called a “shocking loophole.”

“The ability of fraudsters to continue billing Medicare for services is outrageous,” Doggett said. “This is an obvious correction that is needed to safeguard our system. Wherever there are large amounts of government money available, someone tries to steal it.”

KHN found a laundry list of weaknesses that allows people accused or convicted of fraud to easily sidestep bans imposed by federal officials. Among those gaps is the Centers for Medicare & Medicaid Services’ lack of authority to deny or revoke National Provider Identifier, or NPI, numbers after federal regulators have prohibited a person or business from receiving payments from government programs.

Doctors, nurses, other practitioners, and health businesses use the unique, 10-digit NPI numbers to bill and file claims with insurers and others, including Medicare and Medicaid.

Taking away the NPI would “be equivalent of prohibiting a practitioner from practicing in total,” Dara Corrigan, director of CMS’ Center for Program Integrity, wrote in an email response to questions about KHN’s investigation. CMS declined to comment on Doggett’s proposed legislation.

The bill, HR 1745, would give CMS the authority to deactivate NPIs tied to anyone convicted of waste, fraud, or abuse and whose name appears on the exclusions list kept by the Office of Inspector General for the U.S. Department of Health and Human Services. The proposed law would also require CMS to implement recommendations that the inspector general has made to improve NPI reporting and provider transparency.

“This strikes me as what should be an easy bipartisan measure,” Doggett said, adding that he had presented the bill in a face-to-face meeting with Rep. Jason Smith (R-Mo.), who chairs the House Ways and Means Committee. Doggett also alerted that panel’s health subcommittee chair, Rep. Vern Buchanan (R-Fla.).

“They both talk about the need to eliminate fraud, and this is one modest but important way to do it,” Doggett said. Neither Smith’s nor Buchanan’s offices responded to requests for comment.

The OIG declined to comment.

Former Justice Department officials told KHN that repeat violators are savvy and find ways to circumvent the system. KHN examined a sample of 300 health care business owners and executives who are among more than 1,600 on the OIG’s exclusion list since January 2017. Journalists reviewed court and property records, social media, and other publicly available documents.

KHN found:

• Eight people appeared to be serving or served in roles that could violate their bans.
• Six transferred control of a business to family or household members.
• Nine had previous, unrelated felony or fraud convictions, and went on to defraud the health care system.
• And seven were repeat violators, some of whom raked in tens of millions of federal health care dollars before getting caught by officials after a prior exclusion.

Doggett’s bill is “a pretty smart step in the right direction in fixing this issue,” said John Kelly, a former assistant chief of health care fraud at the Department of Justice who is now a partner for the law firm Barnes & Thornburg. Kelly had previously recommended that NPIs should be “essentially wiped clean” when a person is on the exclusions list.

Kelly, who confirmed that Doggett’s office reached out to him after KHN’s investigation was published in December, said taking the NPI number away “certainly doesn’t eliminate all risk” but it’s a move “in the right direction.”

“If you want to bill Medicare, you have to have a valid NPI,” Kelly said.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Julie Rovner is chief Washington correspondent and host of KHN’s 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.

This week, the eyes of the nation are on Texas, where a federal judge who formerly worked for a conservative Christian advocacy group is set to decide whether the abortion pill mifepristone can stay on the market. Mifepristone is half of a two-pill regimen that now accounts for more than half of the abortions in the United States.

Meanwhile, Novo Nordisk, another of the three large drug companies that dominate the market for diabetes treatments, has announced it will cut the price of many of its insulin products. Eli Lilly announced its cuts early this month. But the push for more affordable insulin from activists and members of Congress is not the only reason for the change: Because of quirks in the way the drug market works, cutting prices could actually save the companies money in the long run.

This week’s panelists are Julie Rovner of KHN, Jessie Hellmann of CQ Roll Call, Sarah Karlin-Smith of the Pink Sheet, and Alice Miranda Ollstein of Politico.

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Jessie Hellmann
CQ Roll Call

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Alice Miranda Ollstein
Politico

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Among the takeaways from this week’s episode:

• The federal judge examining the decades-old approval of mifepristone could issue a decision at any time after a hearing largely behind closed doors, during which he appeared open to restricting access to the drug.
• Democratic governors seek to counter the chill of Republican states’ warnings to pharmacies about distributing mifepristone, and a separate lawsuit in Texas seeks to set a precedent for punishing people who aren’t medical providers for assisting someone in obtaining an abortion.
• In pandemic news, Congress is moving forward with legislation that would force the Biden administration to declassify intelligence related to the origins of covid-19, while the editor of Cochrane Reviews posted a clarification of its recently published masking study, noting it is “inaccurate” to say it found that masks are not effective.
• Top federal health officials sent an unusual letter to Florida’s surgeon general, warning that his embrace of vaccination misinformation is harmful, even deadly, to Americans. While covid vaccines come with some risk of negative health effects, contracting covid carries a higher risk of poor outcomes.
• Novo Nordisk’s announcement that it will cut insulin prices puts pressure on Sanofi, the remaining insulin maker that has yet to adjust its prices.
• The Veterans Health Administration will cover Leqembi, a new Alzheimer’s drug. The decision comes as Medicare considers whether it will also cover the drug. Experts caution that new drugs shaking up the weight-loss market could prove costly for Medicare.
• Washington is eyeing changes to federal rules that would affect the practice of medicine. One change would force health plans to speed up “prior authorization” decisions by health insurers and increase transparency around denials, which supporters say would help patients better access needed care. Another proposal would ban noncompete clauses in contracts, including in health care. Arguments for and against the change both cite the issue of physician burnout — though they disagree on whether the ban would make the problem better or worse.

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

Julie Rovner: “Tradeoffs” podcast’s “The Conservative Clash Over Abortion Bans,” by Alice Miranda Ollstein and Dan Gorenstein

Alice Miranda Ollstein: Politico’s “Sharpton Dodges the Spotlight on Latest Push to Ban Menthol Cigarettes,” by Julia Marsh

Sarah Karlin-Smith: Allure’s “With New Legislation, You Can Expect More Recalls to Hit the Beauty Industry,” by Elizabeth Siegel and Deanna Pai

Jessie Hellmann: The New York Times’ “Opioid Settlement Hinders Patients’ Access to a Wide Array of Drugs,” by Christina Jewett and Ellen Gabler

Also mentioned in this week’s podcast:

• CQ Roll Call’s “Noncompete Rule Puts Doctors, Hospitals at Odds,” by Jessie Hellmann
• Cochrane’s “Statement on ‘Physical Interventions to Interrupt or Reduce the Spread of Respiratory Viruses’ Review,” by Karla Soares-Weiser, editor-in-chief
• The “Osterholm Update” podcast’s “Truth in the Midst of Political Theater,” by Michael Osterholm and Chris Dall
• Stat’s “Denied by AI: How Medicare Advantage Plans Use Algorithms to Cut Off Care for Seniors in Need,” by Casey Ross and Bob Herman

click to open the transcript

Transcript: Judging the Abortion Pill

KHN’s ‘What the Health?’Episode Title: Judging the Abortion PillEpisode Number: 289Published: March 16, 2023

[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]

Julie Rovner: Hello and welcome back to KHN’s “What the Health?” I’m Julie Rovner, chief Washington correspondent at Kaiser Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, March 16, 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: Jessie Hellmann of CQ Roll Call.

Jessie Hellmann: Hello.

Rovner: And Sarah Karlin-Smith the Pink Sheet.

Sarah Karlin-Smith: Hi, Julie.

Rovner: So, we have more than enough news. Let us get right to it. We will start this week with abortion. And, of course, that means we will start in Texas. On Wednesday, federal District Judge Matthew Kacsmaryk held a four-hour hearing in Amarillo on a lawsuit charging that the FDA wrongly approved the abortion pill mifepristone back in the year 2000 and that he, Judge Kacsmaryk, should substitute his legal judgment for the FDA’s medical judgment and order the FDA to take it off the market. What was said at the hearing? Well, we don’t really know because only 18 reporters were allowed in. They weren’t allowed to take any electronic devices in with them. And there’s no audio and no transcript. But, Alice, I know you’ve been trying to follow this from afar, like I have. What do we know about what happened and when might we expect a ruling?

Ollstein: So we can expect a ruling literally at any time. Hopefully not while we are taping right now. The judge did say that he would rule as soon as possible, although with four hours of oral arguments to sift through, that could take a bit of time. I always bank on a Friday evening news dump, because that’s when it tends to happen.

Rovner: I keep reminding people that’s when the ACA [Affordable Care Act] ruling came down.

Ollstein: Exactly.

Rovner: Came down on the Friday before Christmas at 7:30 at night.

Ollstein: Exactly. Thankfully, some great reporters were able to make it and provided us with some updates about this. It was really fascinating. The judge definitely, as we anticipated from his record of working for conservative, explicitly anti-abortion organizations before he was confirmed to this judgeship, he did seem open to taking the steps that the challengers were asking for in restricting access to this medication. I think the question really is whether he is going to go for a full ban or — what a lot of the questions during oral arguments centered around — was around rolling back more recent FDA rules that allowed people to get the pills by telemedicine, by mail delivery. And so there is some question as to … if going all the way back to a 20-year-old FDA approval and overturning it is a bridge too far. Maybe these more recent agency rules are sort of more justifiable in having the court go after them. So, we’re all just on high, high alert, refreshing pages over here.

Rovner: Yeah. Once again, remind us of why this could have national impact, this one judge in Amarillo, Texas?

Ollstein: Yeah. So these anti-abortion medical groups incorporated in Amarillo specifically so that they could get in front of this judge who has a record of being an abortion opponent. And so this is an example of “judge shopping,” which is an increasingly common practice. So this could have national implications because it’s going after the federal regulations around these pills. Really, this will mainly impact blue and purple states, where the pills are still legal and still used today. A bunch of states have already banned them and put restrictions on all forms of abortion or just the pills. And so this really will squeeze states where their use is protected.

Rovner: And I think abortion rights organizations are freaked out because everybody thinks, well, it’s just one judge. You’ll go up to the next level and you’ll get it, you know, you’ll get it stayed. Except in this case, the next level is the 5th Circuit Court of Appeals, which is just as conservative. And we seem to do a lot of anti-abortion rulings. And then if you go above the 5th Circuit Court of Appeals, you’re at the Supreme Court, which just overturned Roe v. Wade. So if this judge rules for the plaintiffs in this case, there’s not a lot of hope, I guess, from the abortion rights side that anything could be overturned, right?

Ollstein: It also gets into really interesting stuff about what is on the labels of these different drugs. Pro-abortion rights and other medical groups have been pushing the FDA to officially add miscarriage management to the label of mifepristone, so that if it is banned in this case, people can still access it for that. That has not happened. It is used for miscarriage management off-label. That is the real risk of people losing access; they’re not just for abortion. Again, there are two pills that have been used for abortions together for the past 20 years, and the other one, misoprostol, there could be restrictions put on it through this case, but because it officially is labeled and marketed for non-abortion purposes, it’s harder to ban.

Rovner: It’s a stomach ulcer drug.

Ollstein: Exactly.

Rovner: All right. Well, assuming that the pill is not pulled from the market, the squabble over whether pharmacies will stock it continues. As we discussed at some length last week, Walgreens caved to threats of prosecution from Republican attorneys general and waffled on whether they’ll sell the pills, even in some states where abortion remains legal. Now, a group of Democratic governors are not so subtly urging seven other national pharmacy chains to pay no attention to those Republican attorneys general threats. Have we heard from any of the other pharmacy chains about whether they will or won’t sell mifepristone in the wake of Walgreens getting raked over the coals by both sides?

Ollstein: Total radio silence. And I think that the backlash to Walgreens is the reason for that. I think they saw what happened. They saw Walgreens getting really slammed from both sides. You know, you have anti-abortion folks slamming Walgreens for saying they’ll sell the pills anywhere in the country. And you have pro-abortion rights people mad at Walgreens for saying that they won’t sell them in some places. So it’s kind of a no-win situation. And the other pharmacies, I’m sure, are looking at that and saying, why would we stick our necks out getting certification from the drugmakers to sell the pills in the first place? It’s going to still take a while and who knows what could happen by the? And so why would we prematurely come out and say what we’re doing when we have no idea?

Rovner: Yeah, and I remind people for the millionth time that it’s not that Walgreens was going to stop selling them. None of the pharmacies have started selling them yet because it was only in January that FDA said for the first time that they could, which, as Alice points out, may be one of the things that this judge in Texas rolls back, if he doesn’t try to roll back the entire approval of the pill. One more on abortion: Also in Texas, the ex-husband of a woman who got an abortion last summer is suing three of her friends for, quote, “wrongful death” for allegedly helping her obtain abortion medication. His evidence largely comes from screenshots from a group chat, raising more calls for better privacy protections for electronic information. Meanwhile, it’s not even totally clear that the abortion was illegal last July, because there was some legal back and forth about whether Texas’ trigger law abortion ban was actually triggered when Roe was overturned the month before. If the ex-husband wins this suit, though, I’m wondering how much of a reaction there is going to be to nonmedical providers being found liable for damages. He’s suing them for $1,000,000. We keep hearing about this, but to my knowledge, it hasn’t actually happened yet, that nobody’s been convicted, I don’t think anywhere of, you know, abetting someone having an abortion, particularly a nonmedical provider.

Karlin-Smith: And then I mean, it seems like, again, it’s designed to have these chilling effects on people and get people to think twice before they do things they otherwise would. And I know this story raises the issue of whether there’ll be more pressure on tech companies to encrypt all data and messages, which would be interesting to see, you know, how companies react going forward. But we already know that …

Rovner: How the tech companies react.

Karlin-Smith: Right. I think we already have seen that doctors who take oaths and hold certain ethical standards to protect people’s health and life have felt like they’ve been put in very challenging situations between the law and what the best care they normally provide for their patients with abortion. So if doctors feel this way, if regular people feel like they’re also going to be on the hook for something, I would be more concerned, in the sense that regular people would feel even less protected. The medical providers, which tend to work for companies that have, you know, lawyers to help them guide them through their decision-making. And, you know, they have various types of insurance as well to help them through this stuff. So it does seem like it could have a big chilling effect if this ex-husband wins in any way.

Rovner: Yes. I mean, the point here is to just further isolate women who are pregnant and don’t want to be, for whatever reason, from reaching out, not just to medical providers, but to their friends, or at least, I guess, reaching out in some way other than in person. We will see how this one plays out. All right. Well, let’s talk about covid, which we haven’t done for a while. First, the reignited fight over the lab leak versus wet-market-origin theory. I have studiously tried to steer away from this because the one thing just about every expert agrees on is that we will probably never know for sure where covid-19 came from. And to quote Michael Osterholm, the esteemed epidemiologist at the University of Minnesota, we have to be prepared for the future for both events: another spillover event and for the lab leak. Still, the House moved forward with a bill this week, already passed by the Senate the week before, to require the declassification of some intelligence related to covid’s origins. Jessie, you covered it. What would the bill do? And is … do we think the president is going to sign this?

Hellmann: So the president hasn’t said yet if he will veto it, but if he does, it would be his first time vetoing something, if I’m not mistaken. So it could be a bad look if he does decide to make that decision. It passed the House 419 to 0. There were 16 non-voting members. It passed the Senate unanimously a few weeks ago, so I can’t imagine that he would veto it. And, basically, what the bill does, it would require the director of national intelligence to declassify information on covid-19 origins within 90 days and send the declassified report to Congress. It’s not clear how much that will illuminate. There’s so many questions about this. The intelligence community is still pretty divided on this issue, despite the Department of Energy, intelligence community saying a few weeks ago that they think it could have arose from a lab leak, though they said that with low confidence. So, it’s not really clear what information we’ll get from this.

Rovner: And this is just basically Congress saying, well, we don’t know, but we want to know what you know.

Hellmann: Yeah.

Rovner: Is that basically where we are?

Hellmann: Exactly. And there’s also, like, a lot of hearings going on right now in Congress where they’re starting to bring people and talk about this. And I think last week, or was it this week, a select committee had a closed meeting with the Department of Energy about their report. So there’s definitely a lot of interest in this.

Rovner: We will definitely see how this plays out. Well, another thing, we are still fighting about, three years in, the efficacy of masks. A couple of weeks ago, the gold-standard scientific organization, the Cochrane Review[s], put out a meta-analysis of mask studies conducted over the years that concluded there was not sufficient evidence to demonstrate that masks help stop the spread of respiratory illnesses. Well, as so often happens with conditional findings like those, mask opponents immediately trumpeted that the study shows that masks don’t work, which is not what the study showed. Now, in a fairly rare step, the editor of the Cochrane Review herself has posted a clarification of the summary of the study, which we will post in the show notes, but I will quote from it: “Commentators have claimed that a recently updated Cochrane Review shows that, quote, ‘Masks don’t work,’ quote, which is an inaccurate and misleading interpretation.” So what’s that line again? A lie travels around the world before the truth can even get out of bed. Is that where we are with masks now? We’ve gotten to the point where there’s this huge belief that masks don’t work. And the fact is, like the origin of covid, we don’t actually know.

Karlin-Smith: I think that the “don’t actually know” is maybe not the best way to put it. There are things we do know, and that’s some of what, you know, has tried to be clarified in the past week or so from this, although there is that ultimate question of: Is it too little, too late, and are people already sort of set in their views? And that’s the sort of thing for different types of researchers to figure out in terms of how you convince people of various evidence and stuff. But, you know, I think one line that stuck out to me is, in The New York Times piece, trying to dissect the nuance of this review. And it is really nuanced and you really have to appreciate those nuances. You know, they say is what we learn from the Cochrane Review is that particularly before the pandemic, distributing masks didn’t lead people to wear them. And thus, if a mask is going to work, but you don’t wear it, it’s not going to work. And you know, people who have been sort of anti-mask to some degree have said, well, but that does show masks don’t work, because if we can’t get people to wear masks, what does it matter? Of course, for people that want to wear a mask or, you know, are comfortable wearing a mask, there’s also plenty of evidence that shows well-fitting, quality masks will block covid. So you shouldn’t think on an individual level, “Let me throw away my N95. It’s not doing me any good.” It certainly is doing you good. And we have, you know, laboratory research and other research to prove that. So, you know, The New York Times did a really good job of dissecting what was really studied, how much was studied, pre-covid, post-covid, what they looked at, and to try and help people understand where we’re at, which is definitely, again, that there can be benefits to wearing masks. There are differences in population benefits versus individual benefits. And when you think about the population benefits, too, sometimes I think you also have to think about even small, subtle benefits on a population level can make a big difference. So even if mask-wearing isn’t the be-all and end-all some people maybe want you to think about, but it helps lower transmission and lowers cases on a population level, you know, that can translate to hundreds of thousands or even millions less cases, which can then lead, you know, to whatever corresponding number of deaths. So I think it’s also thinking about that, you know, something doesn’t have to be 100% effective in stopping transmission to be really valuable on a societal level.

Rovner: They could have summarized it as “Masks don’t work if people don’t wear them, and it’s hard to get people to wear them.” That would have been accurate. Right?

Karlin-Smith: But the other question is: How do we figure out how to get people to wear them if they do work?

Rovner: Well, but that’s not what this study was about.

Karlin-Smith: Right.

Ollstein: I found this whole reaction really depressing. And it’s been huge on Capitol Hill. It’s been coming up at all of these hearings with Republican members citing this and flatly declaring that it shows that masks don’t work, using it to go after officials like CDC Director [Rochelle] Walensky and excoriate her for recommending masks. And it just feels like we’ve learned nothing. Like Sarah was saying, we have not learned the difference between individual and population-level benefits. Everything is so black and white. Either something is completely effective or completely ineffective. There’s no nuance around reducing risk, and everyone keeps talking about how the next pandemic is inevitable. And it just feels like we absolutely have not learned anything from this one.

Rovner: Yeah, if you’d asked me three years ago where we would be in three years, this is not the place I would have predicted. Speaking of covid misinformation, this week the directors of the Food and Drug Administration and the Centers for Disease Control and Prevention took the rare step of writing a joint letter to Florida Surgeon General Joseph Ladapo — I assume that’s how he pronounces his name — warning that his claims that the covid vaccine is causing an upswing in adverse events are, quote, “incorrect, misleading and could be harmful to the American public.” Sarah, I’ve never seen a joint letter from the FDA and the CDC, certainly not to a state official. I mean, they must have been very unhappy about this.

Karlin-Smith: Yeah, I think it was a unique step. But also, Robert Califf at the FDA has made going after what he calls, you know, scientific misinformation, a key part of his commissionership. He often makes the claim that he feels like misinformation is what is killing so many Americans. So it wasn’t surprising in the sense that he felt the need to publicly respond in this way, particularly when you have an individual of such high stature in the state making claims that he feels are potentially dangerous to people. And a lot of what the Florida surgeon general said, again, has a little nugget of truth, but has largely been debunked in the way he’s framing it. So, yes, we do know there is some risk of these myocarditis, these negative heart effects from these covid mRNA vaccines. But we also know that getting covid actually poses a higher risk of these heart events. So it’s a trade-off that most people argue you would prefer to go with the vaccine than that. And so, the fact that, you know, you have such a high-level health official in a state perpetuating anti-vaccine sentiments, I think is why you see Califf and Walensky really feeling like they had to respond, though I’m a little bit perplexed as to why they decided to do it at this particular moment. But I think it’s because he actually addressed them first with a letter. But, you know, this surgeon general has been doing this for a while now.

Rovner: He’s been the surgeon general for a while, and he’s been saying things outside the mainstream, shall we say, for a while. Well, I want to turn to drug prices because there’s a lot of news there, too. Another one of the big three diabetes drugmakers, Novo Nordisk, has followed Eli Lilly’s lead in announcing it will slash the cost of many of its insulin products by up to 75%. First question, how much pressure will this put on Sanofi, the last of the drug companies that dominate the diabetes drug market? Are they almost inevitably going to follow?

Karlin-Smith: I think most people think it is inevitable, although maybe not for the reasons we’re all thinking. Some of it is just that peer pressure. But a big thing that sort of comes out in this: Sean Dickson, to give him credit, at West Health was sort of the first person I saw point this out. There’s changes in the law related to Medicaid rebates and what these companies will essentially, you know, the discounts they have to give Medicaid coming up, that when you raise your prices faster than inflation, because these insulin products have had their prices raised so much over the years, they were going to have to start owing the government money soon for their drugs instead of the government reimbursing them. So that’s seen as really probably one of the key reasons why these changes are happening when they’re happening, which is not to, like, take any credit away from all the advocates who have pushed for lower insulin prices over the years. Certainly, this law and regulation that was passed was designed, in fact, to motivate companies to do this. So, you know, there’s a cynical way of looking at it, and there’s another way of working at it. But, you know, I do think most people expect Sanofi to follow through, particularly if they think it’s going to impact their formulary placement, in terms of how they compete with these products. But then also just, you know, from a PR perspective, it’s not going to look good for them to be that last holdout.

Rovner: But this sort of leads to my next question. I haven’t seen anybody mention this yet, but I can’t help but think that particularly Lilly and Novo Nordisk are happy to cut the prices on insulin and get lots of good press, as you point out, because both of them are sitting on giant blockbuster drugs to treat obesity. Novo already has FDA approval for Wegovy, which is the same drug as its diabetes drug Ozempic, just in a larger dose. While Lilly already has the diabetes drug Mounjaro, whose clinical trials for obesity have shown it may be even more effective than Wegovy in helping people lose weight. Am I missing something here, or are these companies about to make a killing on other drugs?

Karlin-Smith: No, I mean, that’s one point. And I think, you know, Novo Nordisk is more reliant on insulin and diabetes products in general than Eli Lilly and Sanofi, which have broader profiles. But one thing to note is most of the insulin drugs that are getting list price cuts are older insulin. So, you know, Novo Nordisk notably did not cut the price of one of their newer insulins … in their announcement this week. So again, you have to look at which particular products they’re cutting and why. But there’s big concern about how the use of some of these diabetes medicines to treat obesity will impact budgets because such a large percentage of the U.S. population is overweight.

Rovner: You’re just getting to my next question.

Karlin-Smith: That’s what … I assumed you were thinking of this Medicare issue. Right now Medicare does not cover drugs for weight loss, but the thought process is, if they change that, because these drugs are much more effective than prior weight loss drugs have been, you know how will Medicare pay for these? So that’s another big drug pricing debate coming down the pike.

Rovner: I was just going to say, I mean, this is the thing that I’ve been thinking about, you know, and I guess the complication with Medicare … there’s a piece in the New England Journal of Medicine this week by a bunch of drug price researchers that said, well, maybe the cost-benefit for Medicare wouldn’t be quite as good as it would be for the younger population, because obesity is not such a factor for shortening your life if you’re over 65 than if you’re under 65. But as others point out, it’s unlikely that private insurers are going to start covering this medication if Medicare doesn’t. So you’ve got this sort of place where you’ve got these very promising drugs that are currently very expensive, many in the neighborhood of $1,300 a month, which is not what most people can afford, if insurance isn’t covering it. But the promise of working … and you’ve got all these rich people buying it from heaven-knows-what doctor. So there is actually a shortage. But this is expensive enough that if they can’t push the price down, it has the potential to really impact the entire cost of the health care system. Right?

Karlin-Smith: Right. I’ve seen people writing about this the way we were talking about the Alzheimer’s drugs if Medicare was decided to cover it for all patients who qualify for Alzheimer’s, some of the drugs that came out, how they would essentially have to raise premiums and the implications there. They remind me also of, a number of years ago now, when some new cholesterol-lowering medicines came out that were really pricey. And what would happen to Medicare if they got prescribed and used widely? That, of course, didn’t happen. In part, perhaps, because payers curtail these to some degree. This is going to become a really interesting public discussion because the costs issue, but it’s also sort of about how we think about obesity and weight loss. And for a long time, there’s been sort of a stigma attached to weight loss and weight loss products and people not thinking about it as a medical condition, something where you really need to try other things before you get a medicine or get a medical procedure. It’s sort of a personal failure, a cosmetic issue, issues of self-control … and the fact that these drugs are much more successful than previous weight loss medicines, which tended to not help people lose very much weight and had a lot more side effects, some of them were fairly dangerous.

Rovner: And got pulled off the market.

Karlin-Smith: Right.

Ollstein: For killing people.

Karlin-Smith: You’re going to confront a lot of issues head-on in figuring out how to deal with this, because it’s not just about price. It’s sort of thinking about what we consider a disease and what we’re willing to treat as a medical condition.

Rovner: Yeah, I think this is going to be a really big debate going forward. Well, you mentioned Alzheimer’s. And speaking of Alzheimer’s, the Veterans [Health] Administration has announced that it will offer patients with Alzheimer’s disease, that newest Alzheimer’s drug, Leqembi, is that how you pronounce it? It received accelerated approval from the FDA in January. That means more evidence needs to be presented to assure its safety and efficacy. Sarah, is this drug really better/safer than Aduhelm, which it’s a chemical cousin of, right? And that’s the one that we had all the fighting over last year. So what do we think Medicare is going to do with this drug?

Karlin-Smith: So we do have some evidence that this drug does seem to be an improvement over Aduhelm, even though Leqembi only got an accelerated approval so far from the FDA. FDA is already evaluating the drug for full approval because in that interim between when they filed the accelerated approval, they actually pretty much wrapped up a Phase 3 clinical trial that looked at outcomes and did show some benefit on cognition and so forth. There’s certainly a debate out there as to how meaningful that benefit was, but they have shown a hard clinical benefit in trials, not just changed a laboratory marker that is predictive of Alzheimer’s. So that is significant for the company. But it’s just that FDA and then I think CMS hasn’t really considered that further data yet. And so I think there is a good chance that if FDA grants the drug full approval, which I think is pretty likely, will reconsider it, and they maybe were just sort of buying them some time because, again, it is going to be a bit of a challenge to figure out how to operationalize this. The VA, if you compare to Medicare, I was looking yesterday, you know, the VA probably has a few hundred thousand people that might qualify for this drug versus Medicare potentially has upwards of 6 million or so forth. So the different budget process and the VA also has more ability to negotiate drug prices with the company than Medicare does right now for this particular product.

Rovner: So very first-world problems. We finally have drugs to treat things that we’ve been trying to treat effectively for a long time, except that we can’t afford them. So we’re going to … I imagine this debate is going to also continue. Well, finally this week, I wanted to talk briefly about the practice of medicine and the role of the federal government, even though that’s sort of what we’ve been talking about this entire time. Jessie, you wrote about the Biden administration’s rules barring noncompete clauses in employment this week. Obviously, this is something that transcends health care. Apparently, even Starbucks doesn’t want its trained baristas going to work for local competitors. But how does this affect health care?

Hellmann: Yeah, so from what I’ve heard, noncompetes are really rampant in the health care. Especially between physicians and group practices in hospitals. So I’ve seen a lot of doctors submitting comments to the FTC telling them, and some of these is begging them to finalize this rule. There have been … the American Academy of Family Physicians has come out really strongly in favor of the rule. Basically, the argument is that it contributes to burnout, when doctors can’t leave jobs they’re unhappy in. And it also contributes to workforce shortages. If you’re in a noncompete agreement saying that you can’t work at a competitor within a 10- or 20-mile radius and you’re really unhappy in your job, but you might feel compelled to just go work somewhere else. On the other side, you have the American Hospital Association coming out really forcefully against this rule, which is not a good sign and, obviously, very powerful in Washington. And they’re kind of using the covid pandemic as the impetus to try to block this, arguing that providers are really burned out right now. People are leaving the workforce. We really can’t afford to lose people at this time to competitors, and this will make it harder for us to retain and recruit workers. Both sides are making the same arguments in different ways.

Rovner: We’ll wait on these rules. Well, the other big intra-health care dispute that federal officials are being asked to weigh in on is prior authorization. That’s when insurers make it cumbersome for patients to get care their doctors want them to have. The idea is to prevent doctors from providing unnecessary or unnecessarily expensive care. But doctors say it just throws up barriers that make it harder even to get fairly typical care and puts patients at risk by delaying their treatment. I honestly thought this got taken care of in the Affordable Care Act, which incorporated the provisions of the patients’ bill of rights that Congress had been arguing about for the entire decade leading up to the ACA. But now the Biden administration has proposed rules that would require insurers to at least respond faster to prior authorization requests, although that wouldn’t start until 2026. This is actually one of the American Medical Association’s top issues. Is this just another example of people who are not doctors trying to practice medicine, i.e., the insurance companies, and does the federal government really have a role in all of this?

Karlin-Smith: I think this is a tough issue because usually the insurance companies do have doctors that are trying to make these decisions. What you see are doctors actually in medical practice, not an insurance company, complaining about as they’re often not the peers that they say they are. So, you know, you might have a cardiologist making a decision regarding a prior authorization that relates to something in the orthopedic field. So there’s questions about whether the people that really have enough knowledge are making the calls.

Rovner: Or, God forbid, they have nurses making these calls, too.

Karlin-Smith: But it’s one of these issues that’s really tough because there is a sort of in some cases, I think, a need and a reason to have prior authorization. And it can be useful because not all doctors are willing to, you know, maybe try the cheapest alternative for patients when one does exist. There are some, you know, to use the term, sort of, “quacks” out there that sometimes recommend things that the medical establishment overall would agree you shouldn’t be using on patients. But it’s just that the way this is, like, in the real world, it’s sort of gotten out of control, I guess, in some ways. The best way … where legitimate medical care is being denied, patients are going through prior authorization for refills of prescription drugs they clearly have benefited from and have been on for years. So it’s a tricky situation because there is certainly, for the government, an economic reason to have some degree of prior authorization. It’s just figuring out how to get the good out of it, where it actually can benefit and help, even both protect patients financially and medically without hurting patients, and particularly patients that don’t understand how to navigate the system and push back against bad decisions on prior auth.

Hellmann: There is also a really interesting story in Stat this week about the role of artificial intelligence and algorithms in making some of these decisions. So I do have questions about that. It does seem like I have been hearing more and more from doctors lately about how burdensome prior auth has been. I did a story a few months ago about prior authorization requirements for opioid treatment programs, and providers are saying it takes a long time to get approval. Sometimes you get denials for seemingly no reason, like people who need opioid treatment. Some of these people are really vulnerable, and once you decide you need care, you kind of want to get them at that moment. And they might not want to go through an appeals process. And that’s something that the administration has acknowledged is an issue, too. They say that they’re going to look at it.

Rovner: I remember when most of the health beat was actually refereeing these disputes between pieces of the medical establishment, so … there are other things that the administration is busy with in the health care realm. Well, that is the news for this week. Now it is time for our extra-credit segment — that’s where 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 khn.org and in our show notes on your phone or other mobile device. Sarah, why don’t you go first this week?

Karlin-Smith: I took a look at a story in Allure magazine: “With New Legislation, You Can Expect More Recalls to Hit the Beauty Industry.” And it’s a good explainer on modernizations to FDA’s regulations of cosmetics that passed in the end of the year in Congress. It’s the first overhaul since World War II. They say it gives the FDA some pretty big new authorities, like they can mandate the recall of a beauty product if it’s contaminated. Before they basically just had to beg companies to voluntarily do that, which in many cases companies don’t want products that might harm people to be on the market. But sometimes for whatever reason, they might not move as you want. And so it’s important for FDA to have that authority. You know, it also will do things like disclose common allergens to protect people, gives FDA a lot of new funding to help implement this. You know, I think it’s a pretty big consumer bill and it was kind of like an interesting thing to look at a different part of health policy we don’t often talk about. One thing that the story brings up that’ll be interesting to see and I know has been sort of a tension with leading up to whether this law would ever get passed, was how small companies will be able to handle this, and will it put basically small beauty out of business over big companies that know how to handle FDA and its regulations? So we’ll look to see what happens to your smaller cosmetic brands moving forward.

Rovner: Indeed. Jessie.

Hellmann: My extra credit is a story from The New York Times called “Opioid Settlement Hinders Patients’ Access to a Wide Array of Drugs.” And this is an angle I hadn’t really thought about: That $21 billion opioid settlement came with an agreement that distributors place stricter limits on drug suppliers to individual pharmacies and scrutinized their dispensing activity. But it doesn’t just apply to opioids. It applies to all controlled substances. So we’re seeing medications like Xanax and Adderall get caught up in this. And pharmacies are saying, like, it’s making it hard for them to fill prescriptions for patients and some of whom have had them for a really long time. And I don’t know, like, if anyone else has heard about the Adderall shortage — I don’t know if you would classify this as a shortage — but it’s an angle that I hadn’t really thought of. Like, it might not just be supply-chain issues.

Rovner: Yeah, I’ve heard about the Adderall shortage. I mean, I think there’s been a lot of coverage of that. So, yeah, I thought that was a really interesting story, too. Alice.

Ollstein: Yes. I chose a story by my colleagues up in New York, my colleague Julia Marsh, which is about the debate in New York over a flavored-cigarette ban and how it is dividing the civil rights community. And so, you have some civil rights leaders saying that we should ban menthol cigarettes because they have caused a lot of health harms to the Black community. They have long been marketed in ways that target the Black community. They’re in some ways more addictive than non-flavored tobacco. So they’re in support of this ban. And then you have Al Sharpton and some other civil rights leaders on the other side warning that such a ban and the enforcement of such a ban will lead to more police interaction with the Black community, more targeting, and potentially more deaths, which is what we’ve seen in the past. And so a fascinating piece about some …

Rovner: Deaths from law enforcement. Not from cigarettes.

Ollstein: Exactly. Well, yes, it’s kind of “damned if you do, damned if you don’t” on this issue. But a fascinating look at this and what could be a preview as the debates around this at the national level ramp up. So we’ve already seen this happen in California and some other states. Now, the debate is really hot in New York, but it could indicate some of the arguments we might hear if it really moves forward at the national level.

Rovner: Well, my extra credit this week is the latest episode of our competitor podcast “Tradeoffs,” which you really should also listen to regularly, by the way. It’s called “The Conservative Clash Over Abortion Bans,” and it’s actually by Alice here. And it’s a really close look at those exceptions to abortion bans, like for life or health. That’s something that we’ve talked about quite a bit here, except this looks at it from the viewpoint of how it’s dividing the anti-abortion community, which is really interesting. So, super helpful. Everybody listen to it. Thank you, Alice. OK. That is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review — that helps other people find us, too. Special thanks, as always, to our ever-patient producer, Francis Ying. As always, you can email us your comments or questions. We’re at whatthehealth — all one word — @kff.org. Or you can tweet me. I’m @jrovner. Alice?

Ollstein: @AliceOllstein

Rovner: Sarah?

Karlin-Smith: @SarahKarlin

Rovner: Jessie.

Hellmann: @jessiehellmann

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

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Yet, when the U.S. Preventive Services Task Force, an independent, influential panel of experts, suggested last year that adults be screened for anxiety, it left out one group — people 65 and older.

The major reason the task force cited in draft recommendations issued in September: “the current evidence is insufficient to assess the balance of benefits and harms of screening for anxiety” in all older adults. (Final recommendations are expected later this year.)

The task force noted that questionnaires used to screen for anxiety may be unreliable for older adults. Screening entails evaluating people who don’t have obvious symptoms of worrisome medical or psychological conditions.

“We recognize that many older adults experience mental health conditions like anxiety” and “we are calling urgently for more research,” said Lori Pbert, associate chief of the preventive and behavioral medicine division at the University of Massachusetts Chan Medical School and a former task force member who worked on the anxiety recommendations.

This “we don’t know enough yet” stance doesn’t sit well with some experts who study and treat seniors with anxiety. Dr. Carmen Andreescu, an associate professor of psychiatry at the University of Pittsburgh, called the task force’s position “baffling” because “it’s well established that anxiety isn’t uncommon in older adults and effective treatments exist.”

“I cannot think of any danger in identifying anxiety in older adults, especially because doing so has no harm and we can do things to reduce it,” said Dr. Helen Lavretsky, a psychology professor at UCLA.

In a recent editorial in JAMA Psychiatry, Andreescu and Lavretsky noted that only about one-third of seniors with generalized anxiety disorder — intense, persistent worry about everyday matters — receive treatment. That’s concerning, they said, considering evidence of links between anxiety and stroke, heart failure, coronary artery disease, autoimmune illness, and neurodegenerative disorders such as dementia.

Other forms of anxiety commonly undetected and untreated in seniors include phobias (like a fear of dogs), obsessive-compulsive disorder, panic disorder, social anxiety disorder (a fear of being assessed and judged by others), and post-traumatic stress disorder.

The smoldering disagreement over screening calls attention to the significance of anxiety in later life — a concern heightened during the covid-19 pandemic, which magnified stress and worry among seniors. Here’s what you should know.

Anxiety is common. According to a book chapter published in 2020, authored by Andreescu and a colleague, up to 15% of people 65 and older who live outside nursing homes or other facilities have a diagnosable anxiety condition.

As many as half have symptoms of anxiety — irritability, worry, restlessness, decreased concentration, sleep changes, fatigue, avoidant behaviors — that can be distressing but don’t justify a diagnosis, the study noted.

Most seniors with anxiety have struggled with this condition since earlier in life, but the way it manifests may change over time. Specifically, older adults tend to be more anxious about issues such as illness, the loss of family and friends, retirement, and cognitive declines, experts said. Only a small fraction develop anxiety after turning 65.

Anxiety can be difficult to identify in older adults. Older adults often minimize symptoms of anxiety, thinking “this is what getting older is like” rather than “this is a problem that I should do something about,” Andreescu said.

Also, seniors are more likely than younger adults to report “somatic” complaints — physical symptoms such as dizziness, fatigue, headaches, chest pain, shortness of breath, and gastrointestinal problems — that can be difficult to distinguish from underlying medical conditions, according to Gretchen Brenes, a professor of gerontology and geriatric medicine at Wake Forest University School of Medicine.

Some types of anxiety or anxious behaviors — notably, hoarding and fear of falling — are much more common in older adults, but questionnaires meant to identify anxiety don’t typically ask about those issues, said Dr. Jordan Karp, chair of psychiatry at the University of Arizona College of Medicine in Tucson.

When older adults voice concerns, medical providers too often dismiss them as normal, given the challenges of aging, said Dr. Eric Lenze, head of psychiatry at Washington University School of Medicine in St. Louis and the third author of the recent JAMA Psychiatry editorial.

Simple questions can help identify whether an older adult needs to be evaluated for anxiety, he and other experts suggested: Do you have recurrent worries that are hard to control? Are you having trouble sleeping? Have you been feeling more irritable, stressed, or nervous? Are you having trouble with concentration or thinking? Are you avoiding things you normally like to do because you’re wrapped up in your worries?

Stephen Snyder, 67, who lives in Zelienople, Pennsylvania, and was diagnosed with generalized anxiety disorder in March 2019, would answer “yes” to many of these queries. “I’m a Type A personality and I worry a lot about a lot of things — my family, my finances, the future,” he told me. “Also, I’ve tended to dwell on things that happened in the past and get all worked up.”

Treatments are effective. Psychotherapy — particularly cognitive behavioral therapy, which helps people address persistent negative thoughts — is generally considered the first line of anxiety treatment in older adults. In an evidence review for the task force, researchers noted that this type of therapy helps reduce anxiety in seniors seen in primary care settings.

Also recommended, Lenze noted, is relaxation therapy, which can involve deep breathing exercises, massage or music therapy, yoga, and progressive muscle relaxation.

Because mental health practitioners, especially those who specialize in seniors’ mental health, are extremely difficult to find, primary care physicians often recommend medications to ease anxiety. Two categories of drugs — antidepressants known as SSRIs (selective serotonin reuptake inhibitors) and SNRIs (serotonin-norepinephrine reuptake inhibitors) — are typically prescribed, and both appear to help to older adults, experts said.

Frequently prescribed to older adults, but to be avoided by them, are benzodiazepines, a class of sedating medications such as Valium, Ativan, Xanax, and Klonopin. The American Geriatrics Society has warned medical providers not to use these in older adults, except when other therapies have failed, because they are addictive and significantly increase the risk of hip fractures, falls and other accidents, and short-term cognitive impairments.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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