Debt Deal Leaves Health Programs (Mostly) Intact
The Host
Julie Rovner
KFF Health News
Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
A final deal cut between President Joe Biden and House Republicans extends the U.S. debt ceiling deadline to 2025 and reins in some spending. The bill signed into law by the president will preserve many programs at their current funding levels, and Democrats were able to prevent any changes to the Medicare and Medicaid programs.
Still, millions of Americans are likely to lose their Medicaid coverage this year as states are once again allowed to redetermine who is eligible and who is not; Medicaid rolls were frozen for three years due to the pandemic. Data from states that have begun to disenroll people suggests that the vast majority of those losing insurance are not those who are no longer eligible, but instead people who failed to complete required paperwork — if they received it in the first place.
This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, Lauren Weber of The Washington Post, and Jessie Hellmann of CQ Roll Call.
Panelists
Jessie Hellmann
CQ Roll Call
Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Lauren Weber
The Washington Post
Among the takeaways from this week’s episode:
- Lawmakers and White House officials spared health programs from substantial spending cuts in a last-minute agreement to raise the nation’s debt ceiling. And Biden named Mandy Cohen, a former North Carolina health director who worked in the Obama administration, to be the next director of the Centers for Disease Control and Prevention. Though she lacks academic credentials in infectious diseases, Cohen enters the job with a reputation as someone who can listen and be listened to by both Democrats and Republicans.
- The removal of many Americans from the Medicaid program, post-public health emergency, is going as expected: With hundreds of thousands already stripped from the rolls, most have been deemed ineligible not because they don’t meet the criteria, but because they failed to file the proper paperwork in time. Nearly 95 million people were on Medicaid before the unwinding began.
- Eastern and now southern parts of the United States are experiencing hazardous air quality conditions as wildfire smoke drifts from Canada, raising the urgency surrounding conversations about the health effects of climate change.
- The drugmaker Merck & Co. sued the federal government this week, challenging its ability to press drugmakers into negotiations over what Medicare will pay for some of the most expensive drugs. Experts predict Merck’s coercion argument could fall flat because drugmakers voluntarily choose to participate in Medicare, though it is unlikely this will be the last lawsuit over the issue.
- In abortion news, some doctors are pushing back against the Indiana medical board’s decision to reprimand and fine an OB-GYN who spoke out about providing an abortion to a 10-year-old rape victim from Ohio. The doctors argue the decision could set a bad precedent and suppress doctors’ efforts to communicate with the public about health issues.
Also this week, Rovner interviews KFF Health News senior correspondent Sarah Jane Tribble, who reported the latest KFF Health News-NPR “Bill of the Month” feature, about a patient with Swiss health insurance who experienced the sticker shock of the U.S. health care system after an emergency appendectomy. 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 New York Times’ “This Nonprofit Health System Cuts Off Patients With Medical Debt,” by Sarah Kliff and Jessica Silver-Greenberg.
Jessie Hellmann: MLive’s “During the Darkest Days of COVID, Some Michigan Hospitals Made 100s of Millions,” by Matthew Miller and Danielle Salisbury.
Joanne Kenen: Politico Magazine’s “Can Hospitals Turn Into Climate Change Fighting Machines?” by Joanne Kenen.
Lauren Weber: The Washington Post’s “Smoke Brings a Warning: There’s No Escaping Climate’s Threat to Health,” by Dan Diamond, Joshua Partlow, Brady Dennis, and Emmanuel Felton.
Also mentioned in this week’s episode:
KFF Health News’ “As Medicaid Purge Begins, ‘Staggering Numbers’ of Americans Lose Coverage,” by Hannah Recht.
Click to open the transcript
Transcript: Debt Deal Leaves Health Programs (Mostly) Intact
KFF Health News’ ‘What the Health?’Episode Title: Debt Deal Leaves Health Programs (Mostly) IntactEpisode Number: 301Published: June 8, 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 are taping this week from the smoky, hazy, “code purple” Washington, D.C., area on Thursday, June 8, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hi, everybody.
Rovner: Lauren Weber, of The Washington Post.
Lauren Weber: Hi.
Rovner: And Jessie Hellmann, of CQ Roll Call.
Hellmann: Hello.
Rovner: Later in this episode we’ll have my interview with KFF Health News’s Sarah Jane Tribble about the latest KFF Health News-NPR “Bill of the Month.” This month is about the sticker shock of the American health care system experienced by residents of other countries. Before we get to this week’s news, I hope you all enjoyed our special panel of big health policy thinkers for our 300th episode. If you didn’t listen, you might want to go back and do that at some point. Also, that means we have two weeks of news to catch up on, so let us get to it. We’re going to start this week, I hope, for the last time with the fight over the debt ceiling. Despite lots of doubts, President Biden managed to strike a budget deal with House Republicans, which fairly promptly passed the House and Senate and was signed into law a whole two days before the Treasury Department had warned that the U.S. might default. The final package extends the debt ceiling until January 1, 2025, so after the next election, which was a big win for the Democrats, who don’t want to do this exercise again anytime soon. In exchange, Republicans got some budget savings, but nothing like the dramatic bill that House Republicans passed earlier this spring. So, Jessie, what would it do to health programs?
Hellmann: The deal cuts spending by 1.5 trillion over 10 years. It has caps on nondefense discretionary funding. That would have a big impact on agencies and programs like the NIH [National Institutes of Health], which has been accustomed to getting pretty large increases over the years. So nondefense discretionary spending will be limited to about 704 billion next fiscal year, which is a cut of about 5%. And then there’s going to be a 1% increase in fiscal 2025, which, when you consider inflation, probably isn’t much of an increase at all. So the next steps are seeing what the appropriators do. They’re going to have to find a balance between what programs get increases, which ones get flat funding — it’s probably going to be a lot of flat funding, and we’re probably at the end of an era for now with these large increases for NIH and other programs, which have traditionally been very bipartisan, but it’s just a different climate right now.
Rovner: And just to be clear, I mean, this agreement doesn’t actually touch the big sources of federal health spending, which are Medicare and Medicaid, not even any work requirements that the Republicans really wanted for Medicaid. In some ways, the Democrats who wanted to protect health spending got off pretty easy, or easier than I imagine they expected they would, right?
Hellmann: Advocates would say it could have been much worse. All things considered, when you look at the current climate and what some of the more conservative members of the House were initially asking for, this is a win for Democrats and for people who wanted to protect health care spending, especially the entitlements, because they — Republicans did want Medicaid work requirements and those just did not end up in the bill; they were a nonstarter. So, kind of health-care-related, depending on how you look at it, there was an increase in work requirements for SNAP [Supplemental Nutrition Assistance Program], which is, like, a food assistance program. So that will be extended to age 55, though they did include more exemptions for people who are veterans —
Rovner: Yeah, overall, that may be a wash, right? There may be the same or fewer people who are subject to work requirements.
Hellmann: Yeah. And all those changes would end in 2030, so —
Weber: Yeah, I just wanted to say, I mean, if we think about this — we’re coming out of a pandemic and we’re not exactly investing in the health system — I think it’s necessary to have that kind of step-back context. And we’ve seen this before. You know, it’s the boom-bust cycle of pandemic preparedness funding, except accelerated to some extent. I mean, from what I understand, the debt deal also clawed back some of the public health spending that they were expecting in the billions of dollars. And I think the long-term ramifications of that remain to be seen. But we could all be writing about that in 10 years again when we’re looking at ways that funding fell short in preparedness.
Rovner: Yeah, Joanne and I will remember that. Yeah, going back to 2001. Yeah. Is that what you were about to say?
Kenen: I mean, this happens all the time.
Weber: All the time, right.
Kenen: And we learn lessons. I mean, the pandemic was the most vivid lesson, but we have learned lessons in the past. After anthrax, they spent more money, and then they cut it back again. I mean, I remember in 2008, 2009, there was a big fiscal battle — I don’t remember which battle it was — you know, Susan Collins being, you know, one of the key moderates to cut the deal. You know, what she wanted was to get rid of the pandemic flu funding. And then a year later, we had H1N1, which turned out not to be as bad as it could have been for a whole variety of reasons. But it’s a cliche: Public health, when it works, you don’t see it and therefore people think you don’t need it. Put that — put the politics of what’s happened to public health over the last three years on top of that, and, you know, public health is always going to have to struggle for funds. Public health and larger preparedness is always going to happen to have to struggle for funds. And it would have, whether it was the normal appropriations process this year, which is still to come, or the debt ceiling. It is a lesson we do not learn the hard way.
Weber: That’s exactly right. I’ll never forget that Tom Harkin said to me that after Obama cut, he sacrificed a bunch of prevention funding for the CDC [Centers for Disease Control and Prevention] in the ACA [Affordable Care Act] deal, and he never spoke to him again, he told me, because he was so upset because he felt like those billions of dollars could have made a difference. And who knows if 10 years from now we’ll all be talking about this pivotal moment once more.
Rovner: Yeah, Tom Harkin, the now-former senator from Iowa, who put a lot of prevention into the ACA; that was the one thing he really worked hard to do. And he got it in. And as you point out, and it was almost immediately taken back out.
Weber: Yeah.
Kenen: Not all of it.
Weber: Not all of it, but a lot of it.
Kenen: It wasn’t zero.
Rovner: It became a piggy bank for other things. I do want to talk about the NIH for a minute, though, because Jessie, as you mentioned, there isn’t going to be a lot of extra money, and NIH is used to — over the last 30 years — being a bipartisan darling for spending. Well, now it seems like Congress, particularly some of the Republicans, are not so happy with the NIH, particularly the way it handled covid. There’s a new NIH director who has been nominated, Dr. Monica Bertagnolli, who is currently the head of the National Cancer Institute. This could be a rocky summer for the NIH on Capitol Hill, couldn’t it?
Hellmann: Yeah, I think there’s been a strong desire for Republicans to do a lot of oversight. They’ve been looking at the CDC. I think they’re probably going to be looking at the NIH next. Francis Collins is no longer at NIH. Anthony Fauci is no longer there. But I think Republicans have indicated they want to bring them back in to talk about some of the things that happened during the pandemic, especially when it comes to some of the projects that were funded.
Kenen: There was a lull in raising NIH spending. It was flat for a number of years. I can’t remember the exact dates, but I remember it was — Arlen Specter was still alive, and it … [unintelligible] … because he is the one who traditionally has gotten a lot of bump ups in spending. And then there was a few years, quite a few years, where it was flat. And then Specter got the spigots opened again and they stayed open for a good 10 or 15 years. So we’re seeing, and partly a fiscal pause, and partly the — again, it’s the politicization of science and public health that we did not have to this extent before this pandemic.
Rovner: Yeah, I think it’s been a while since NIH has been under serious scrutiny on Capitol Hill. Well, speaking of the CDC, which has been under serious scrutiny since the beginning of the pandemic, apparently is getting a new director in Dr. Mandy Cohen, assuming that she is appointed as expected. She won’t have to be confirmed by the Senate because the CDC director won’t be subject to Senate approval until 2025. Now, Mandy Cohen has done a lot of things. She worked in the Obama administration on the implementation of the Affordable Care Act. She ran North Carolina’s Department of Health [and Human Services], but she’s not really a noted public health expert or even an infectious disease doctor. Why her for this very embattled agency at this very difficult time?
Kenen: I think there are a number of reasons. A lot of her career was on Obamacare kind of things and on CMS kind of quality-over-quantity kind of things, payment reform, all that. She is a physician, but she did a good job in North Carolina as the top state official during the pandemic. I reported a couple of magazine pieces. I spent a lot of time in North Carolina before the pandemic when she was the state health secretary, and she was an innovator. And not only was she an innovator on things like, you know, integrating social determinants into the Medicaid system; she got bipartisan support. She developed not perfect, but pretty good relations with the state Republicans, and they are not moderates. So I think I remember writing a line that said something, you know, in one of those articles, saying something like, “She would talk to the Republicans about the return on investment and then say, ‘And it’s also the right thing to do.’ And then she would go to the Democrats and say, ‘This is the right thing to do. And there’s also an ROI.’”. So, so I think in a sort of low-key way, she has developed a reputation for someone who can listen and be listened to. I still think it’s a really hard job and it’s going to batter anyone who takes it.
Rovner: I suspect right now at CDC that those are probably more important qualities than somebody who’s actually a public health expert but does not know how to, you know, basically rescue this agency from the current being beaten about the head and shoulders by just about everyone.
Kenen: Yeah, but she also was the face of pandemic response in her state. And she did vaccination and she did disparities and she did messaging and she did a lot of the things that — she does not have an infectious disease degree, but she basically did practice it for the last couple of years.
Rovner: She’s far from a total novice.
Kenen: Yeah.
Rovner: All right. Well, it’s been a while since we talked about the Medicaid “unwinding” that began in some states in early April. And the early results that we’re seeing are pretty much as expected. Many people are being purged from the Medicaid rolls, not because they’re earning too much or have found other insurance, but because of paperwork issues; either they have not returned their paperwork or, in some cases, have not gotten the needed paperwork. Lauren, what are we seeing about how this is starting to work out, particularly in the early states?
Weber: So as you said, I mean, much like we expected to see: So 600,000 Americans have been disenrolled so far, since April 1. And some great reporting that my former colleague Hannah Recht did this past week: She reached out to a bunch of states and got ahold of data from 19 of them, I believe. And in Florida, it was like 250,000 people were disenrolled and somewhere north of 80% of them, it was for paperwork reasons. And when we think about paperwork reasons, I just want us all to take a step back. I don’t know about anyone listening to this, but it’s not like I fill out my bills on the most prompt of terms all of the time. And in some of these cases, people had two weeks to return paperwork where they may not have lived at the same address. Some of these forms are really onerous to fill out. They require payroll tax forms, you know, that you may not have easily accessible — all things that have been predicted, but the hard numbers just show is the vast majority of people getting disenrolled right now are being [dis]enrolled for paperwork, not because of eligibility reasons. And too, it’s worth noting, the reason this great Medicaid unwinding is happening is because this was all frozen for three years, so people are not in the habit of having to fill out a renewal form. So it’s important to keep that in mind, that as we’re seeing the hard data show, that a lot of this is, is straight-up paperwork issues. The people that are missing that paperwork may not be receiving it or just may not know they’re supposed to be doing it.
Rovner: As a reminder, I think by the time the three-year freeze was over, there were 90 million people on Medicaid.
Kenen: Ninety-five.
Rovner: Yeah. So it’s a lot; it’s like a quarter of the population of the country. So, I mean, this is really impacting a lot of people. You know, I know particularly red states want to do this because they feel like they’re wasting money keeping ineligible people on the rolls. But if eligible people become uninsured, you can see how they’re going to eventually get sicker, seek care; those providers are going to check and see if they’re eligible for Medicaid, and if they are, they’re going to put them back on Medicaid. So they’re going to end up costing even more. Joanne, you wanted to say something?
Kenen: Yeah. Almost everybody is eligible for something. The exceptions are the people who fall into the Medicaid gap, which is now down to 10 states.
Rovner: You mean, almost everybody currently on Medicaid is eligible.
Kenen: Anyone getting this disenrollment notification or supposed to receive the disenrollment notification that never reaches them — almost everybody is eligible for, they’re still eligible for Medicaid, which is true for the bulk of them. If they’re not, they’re going to be eligible for the ACA. These are low-income people. They’re going to get a lot heavily subsidized. Whether they understand that or not, someone needs to explain it to them. They’re working now, and the job market is strong. You know, it’s not 2020 anymore. They may be able to get coverage at work. Some of them are getting coverage at work. One of the things that I wrote about recently was the role of providers. States are really uneven. Some states are doing a much better job. You know, we’ve seen the numbers out of Florida. They’re really huge disenrollment numbers. Some states are doing a better job. Georgetown Center on Health Insurance — what’s the right acronym? — Children’s and Family. They’re tracking, they have a state tracker, but providers can step up, and there’s a lot of variability. I interviewed a health system, a safety net in Indiana, which is a red state, and they have this really extensive outreach system set up through mail, phone, texts, through the electronic health records, and when you walk in. And they have everybody in the whole system, from the front desk to the insurance specialists, able to help people sort this through. So some of the providers are quite proactive in helping people connect, because there’s three things: There’s understanding you’re no longer eligible, there’s understanding what you are eligible for, and then actually signing up. They’re all hard. You know, if your government’s not going to do a good job, are your providers or your community health clinics or your safety net hospitals — what are they doing in your state? That’s an important question to ask.
Rovner: Providers have an incentive because they would like to be paid.
Kenen: Paid.
Weber: Well, the thing about Indiana too, Joanne, I mean — so that was one of the states that Hannah got the data from. They had I think it was 53,000 residents that have lost coverage in the first amount of unwinding. 89% of them were for paperwork. I mean, these are not small fractions. I mean, it is the vast majority that is being lost for this reason. So that’s really interesting to hear that the providers there are stepping up to face that.
Kenen: It’s not all of them, but you can capture these people. I mean, there’s a lot that can go wrong. There’s a lot that — in the best system, you’re dealing with [a] population that moves around, they don’t have stable lives, they’ve got lots of other things to deal with day to day, and dealing with a health insurance notice in a language you may not speak delivered to an address that you no longer live at — that’s a lot of strikes.
Rovner: It is not easy. All right. Well, because we’re in Washington, D.C., we have to talk about climate change this week. My mother, the journalist, used to say whenever she would go give a speech, that news is what happens to or in the presence of an editor. I have amended that to say now news is what happens in Washington, D.C., or New York City. And since Washington, D.C., and New York City are both having terrible air quality — legendary, historically high air quality — weeks, people are noticing climate change. And yes, I know you guys on the West Coast are saying, “Uh, hello. We’ve been dealing with this for a couple of years.” But Joanne and Lauren, both of your extra credits this week have to do with it. So I’m going to let you do them early. Lauren, why don’t you go first?
Weber: Yeah, I’ve highlighted a piece by my colleague Dan Diamond and a bunch of other of my colleagues, who wrote all about how this is just a sign of what’s to come. I mean, this is not something that is going away. The piece is titled “Smoke Brings a Warning: There’s No Escaping Climate’s Threat to Health.” I think, Julie, you hit the nail on the head. You know, we all live here in Washington, D.C. A lot of other journalist friends live in New York. There’s been a lot of grousing on Twitter that everyone is now covering this because they can see it. But the reality is, when people can see it, they pay attention. And so the point of the story is, you know, look, I mean, this is climate change in action. We’re watching it. You know, it’s interesting; this story includes a quote from Mitch McConnell saying [to] follow the public health authorities, which I found to be quite fascinating considering the current Republican stance on some public health authorities during the pandemic. And I’m just very curious to see, as we continue to see this climate change in reality, how that messaging changes from both parties.
[Editor’s note: The quote Weber referenced did not come from McConnell but from Senate Majority Leader Chuck Schumer, a Democrat, and would not have warranted as much fascination in this context.]
Kenen: But I think that you’ve seen, with the fires on the West Coast, nobody is denying that there’s smoke and pollutants in the air — of either party. You know, we can look out our windows and see it right now, right? But they’re not necessarily accepting that it’s because of climate change, and that — I’m not sure that this episode changes that. Because many of the conservatives say it’s not climate change; it’s poor management of forests. That’s the one you hear a lot. But there are other explain — or it’s just, you know, natural variation and it’ll settle down. So it remains to be seen whether this creates any kind of public acknowledgment. I mean, you have conservative lawmakers who live in parts of the country that are already very — on coasts, on hurricane areas, and, you know, forest fire areas there. You have people who are already experiencing it in their own communities, and it does not make them embrace the awareness of poor air quality because of a forest fire. Yes. Does it do what Julie was alluding to, which is change policy or acknowledging what, you know, the four of us know, and many millions of other people, you know, that this is related to climate change, not just — you know, I’m not an expert in forestry, but this is not just — how many fires in Canada, 230?
Rovner: Yeah. Nova Scotia and Quebec don’t tend to have serious forest fire issues.
Kenen: Right. This is across — this is across huge parts of the United States now. It’s going into the South now. I was on the sixth floor of a building in Baltimore yesterday, and you could see it rolling in.
Rovner: Yeah. You have a story about people trying to do something about it. So why don’t you tell us about that.
Kenen: Well it was a coincidence that that story posted this week, because I had been working on it for a couple of months, but I wrote a story. The headline was — it’s in Politico Magazine — it’s “Can Hospitals Turn Into Climate Change Fighting Machines?” Although one version of it had a headline that I personally liked more, which was “Turn Off the Laughing Gas.” And it’s about how hospitals are trying to reduce their own carbon footprint. And when I wrote this story, I was just stunned to learn how big that carbon footprint is. The health sector is 8.5% of greenhouse gas emissions in the United States, and that’s twice as high as the health sector in comparable industrial countries, and —
Rovner: We’re No. 1!
Kenen: Yes, once again, and most of it’s from hospitals. And there’s a lot that the early adopters, which is now, I would say about 15% of U.S. hospitals are really out there trying to do things, ranging from changing their laughing gas pipes to composting to all sorts of, you know, energy, food, waste, huge amount of waste. But one of the — you know, everything in hospitals is use once and throw it out or unwrap it and don’t even use it and still have to throw it out. But one of the themes of the people I spoke to is that hospitals and doctors and nurses and everybody else are making the connection between climate change and the health of their own communities. And that’s what we’re seeing today. That’s where the phenomenon Laura was talking about is connected. Because if you look out the window and you can see the harmful air, and some of these people are going to be showing up in the emergency rooms today and tomorrow, and in respiratory clinics, and people whose conditions are aggravated, people who are already vulnerable, that the medical establishment is making the connection between the health of their own community, the health of their own patients, and climate. And that’s where you see more buy-in into this, you know, greening of American hospitals.
Rovner: Speaking of issues that that seem insoluble but people are starting to work on, drug prices. In drug price news, drug giant Merck this week filed suit against the federal government, charging that the new requirements for Medicare price negotiation are unconstitutional for a variety of reasons. Now, a lot of health lawyers seem pretty dubious about most of those claims. What’s Merck trying to argue here, and why aren’t people buying what they’re selling?
Hellmann: So there’s two main arguments they’re trying to make. The primary one is they say this drug price negotiation program violates the Fifth Amendment, which prohibits the government from taking private property for public use without just compensation. So they argue that under this negotiation process they would basically be coerced or forced into selling these drugs for a price that they think is below its worth. And then the other argument they make is it violates their First Amendment rights because they would be forced to sign an agreement they didn’t agree with, because if they walk away from the negotiations, they have to pay a tax. And so it’s this coercive argument that they are making. But there’s been some skepticism. You know, Nick Bagley noted on Twitter that it’s voluntary to participate in Medicare. Merck doesn’t have a constitutional right to sell its drugs to the government at a price that they have set. And he also noted — I thought this was interesting — I didn’t know that there was kind of a similar case 50 years ago, when Medicare was created. Doctors had sued over a law Congress passed requiring that a panel review treatment decisions that doctors were making. The doctors sued also under the Fifth Amendment in the courts, and the Supreme Court sided with the government. So he seems to think there’s a precedent in favor of the government’s approach here. And there just seems to be a lot of skepticism around these arguments.
Rovner: And Nick Bagley, for those of you who don’t know, is a noted law professor at the University of Michigan who specializes in health law. So he knows whereof he speaks on this stuff. I mean, Joanne, you were, you were mentioning, I mean, this was pretty expected somebody was going to sue over this.
Kenen: It’s probably not the last suit either. It’s probably the first of, but, I mean, the government sets other prices in health care. And, you know, it sets Medicare Advantage rates. It sets rates for all sorts of Medicare procedures. The VA [U.S. Department of Veterans Affairs] sets prices for every drug that’s in its formulary or, you know, buys it at a negotiated —
Rovner: Private insurers set prices.
Kenen: Right. But that’s not government. That’s different.
Rovner: That’s true.
Kenen: They’re not suing private insurers. So, you know, I’m not Nick Bagley, but I usually respect what Nick Bagley has to say. On the other hand, we’ve also seen the courts do all sorts of things we have not expected them to do. There’s another Obamacare case right now. So, precedent, schmecedent, you know, like — although on this one we did expect the lawsuits. Somebody also pointed out, I can’t remember where I read it, so I’m sorry not to credit it, maybe it was even Nick — that even if they lose, if they buy a extra year or two, they get another year or two of profits, and that might be all they care about.
Rovner: It may well be. All right. Well, let us turn to abortion. It’s actually been relatively quiet on the abortion front these last couple of weeks as we approach the one-year anniversary of the Supreme Court striking down Roe v Wade. I did want to mention something that’s still going on in Indiana, however. You may remember the case last year of the 10-year-old who was raped in Ohio and had to go to Indiana to have the pregnancy terminated. That was the case that anti-abortion activists insisted was made up until the rapist was arraigned in court and basically admitted that he had done it. Well, the Indiana doctor who provided that care is still feeling the repercussions of that case. Caitlin Bernard, who’s a prominent OB-GYN at the Indiana University Health system, was first challenged by the state’s attorney general, who accused her of not reporting the child abuse to the proper state authorities. That was not the case; she actually had. But the attorney general, who’s actually a former congressman, Todd Rokita, then asked the state’s medical licensing board to discipline her for talking about the case, without naming the patient, to the media. Last month, the majority of the board voted to formally reprimand her and fine her $3,000. Now, however, lots of other doctors, including those who don’t have anything to do with reproductive health care, are arguing that the precedent of punishing doctors for speaking out about important and sometimes controversial issues is something that is dangerous. How serious a precedent could this turn out to be? She didn’t really violate anybody’s private — she didn’t name the patient. Lauren, you wanted to respond.
Weber: Yeah, I just think it’s really interesting. If you look at the context, the number of doctors that actually get dinged by the medical board, it’s only a couple thousand a year. So this is pretty rare. And usually what you get dinged for by the medical board are really severe things like sexual assault, drug abuse, alcohol abuse. So this would seem to indicate quite some politicization, and the fact that the AG was involved. And I do think that, especially in the backdrop of all these OB-GYN residents that are looking to apply to different states, I think this is one of the things that adds a chilling effect for some reproductive care in some of these red states, where you see a medical board take action like this. And I just think in general — it cannot be stated enough — this is a rare action, and a lot of medical board actions will be, even if there is an action, will be a letter in your file. I mean, to even have a fine is quite something and not it be like a continuing education credit. So it’s quite noteworthy.
Rovner: Well, meanwhile, back in Texas, the judge who declared the abortion pill to have been wrongly approved by the FDA, Trump appointee Matthew Kacsmaryk, is now considering a case that could effectively bankrupt Planned Parenthood for continuing to provide family planning and other health services to Medicaid patients while Texas and Louisiana were trying to kick them out of the program because the clinics also provided abortions in some cases. Now, during the time in question, a federal court had ordered the clinics to continue to operate as usual, banning funding for abortions, which always has been the case, but allowing other services to be provided and reimbursed by Medicaid. This is another of those cases that feels very far-fetched, except that it’s before a judge who has found in favor of just about every conservative plaintiff that has sought him out. This could also be a big deal nationally, right? I mean, Planned Parenthood has been a participant in the Medicaid program in most states for years — again, not paying for abortion, but for paying for lots of other services that they provide.
Kenen: The way this case was structured, there’s all these enormous number of penalties, like 11,000 per case or something, and it basically comes out to be $1.8 billion. It would bankrupt Planned Parenthood nationally, which is clearly the goal of this group, which has a long history that — we don’t have time to go into their long history. They’re an anti-abortion group that’s — you know, they were filming people, and there’s a lot of history there. It’s the same people. But, you know, this judge may in fact come out with a ruling that attempts to shut down Planned Parenthood completely. It doesn’t mean that this particular decision would be upheld by the 5th Circuit or anybody else.
Rovner: Or not. The same way the mifepristone ruling finally woke up other drugmakers who don’t have anything to do with the abortion fight because, oh my goodness, if a judge can overturn the approval of a drug, what does the FDA approval mean? This could be any government contractor — that you can end up being sued for having accepted money that was legal at the time you accepted it, which feels like not really a very good business partner issue. So another one that we will definitely keep an eye on.
Kenen: I mean, that’s the way it may get framed later, is that this isn’t really about Planned Parenthood; this is about a business or entity obeying the law, or court order. I mean, that’s how the pushback might come. I mean, I think people think Planned Parenthood, abortion, they equate those. And most Planned Parenthood clinics do not provide abortion, while those that do are not using federal funds, as a rule; there are exceptions. And Planned Parenthood is also a women’s health provider. They do prenatal care in some cases; they do STD [sexually transmitted disease] treatment and testing. They do contraception. They, you know, they do other things. Shutting down Planned Parenthood would mean cutting off many women’s access to a lot of basic health care.
Rovner: And men too, I am always reminded, because, particularly for sexually transmitted diseases, they’re an important provider.
Kenen: Yeah. HIV and other things.
Rovner: All right. Well, that is this week’s news. Now we will play my “Bill of the Month” interview with Sarah Jane Tribble, and then we will be back with our extra credits. We are pleased to welcome back to the podcast Sarah Jane Tribble, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” story. Sarah, thanks for coming in.
Sarah Jane Tribble: Thanks for having me.
Rovner: So this month’s patient is a former American who now lives in Switzerland, a country with a very comprehensive health insurance system. But apparently it’s not comprehensive enough to cover the astronomical cost of U.S. health care. So tell us who the patient is and how he ended up with a big bill.
Tribble: Yeah. Jay Comfort is an American expatriate, and he has lived overseas for years. He’s a former educator. He’s 66 years old. And he decided to retire in Switzerland. He has that country’s basic health insurance plan. He pays his monthly fee and gets a deductible, like we do here in the U.S. He traveled last year for his daughter’s wedding and ended up with an emergency appendectomy in the ER [emergency room] at the University of Pittsburgh in Williamsport.
Rovner: And how big was the ultimate bill?
Tribble: Well, he was in the hospital just about 14 hours, and he ended up with a bill of just over $42,000.
Rovner: So not even overnight.
Tribble: No.
Rovner: That feels like a lot for what was presumably a simple appendectomy. Is it a lot?
Tribble: We talked to some experts, and it was above what they had predicted it would be. It did include the emergency appendectomy, some scans, some laboratory testing, three hours in the recovery room. There was also some additional diagnostic testing. They had sent off some cells for a diagnostics and did find cancer at the time. Still, it didn’t really explain all the extra cost. Healthcare Bluebook, which you can look up online, has this at about $14,000 for an appendectomy. One expert told me, if you look at Medicare prices and average out in that region, it would be between $6,500 and $18,000-ish. So, yeah, this was expensive compared to what the experts told us.
Rovner: So he goes home and he files a claim with his Swiss insurance. What did they say?
Tribble: Well, first let me just say, cost in the U.S. can be two to three times that in other countries. Switzerland isn’t known as a cheap country, actually. Its health care is —
Rovner: It’s the second most expensive after the U.S.
Tribble: Considered the most expensive in Europe, right. So this is pretty well known. So he was still surprised, though, when he got the response from his Swiss insurance. They said they were willing to pay double because it was an emergency abroad. Total, with the appendectomy and some extra additional scans and so forth: About $8,000 is what they were willing to pay.
Rovner: So, double what they would have paid if he’d had it done in Switzerland.
Tribble: Yeah.
Rovner: So 42 minus 8 leaves a large balance left. Yeah. I mean, he’s stuck with — what is that — $34,000. He’s on the hook for that. I mean, it’s better than having nothing, obviously, but it’s a lot of money and it’s really striking, the difference, because, you know, in Switzerland, they’re very much like, we would pay this amount, then we’ll double it to pay you back. And he still has this enormous bill he’s left paying. He’s on a fixed income. He’s retired. So it’s quite the shock to his system.
Rovner: So what happened? Has this been resolved?
Tribble: Let me first tell you what happened at the ER, because Jay was very diligent about providing documents and explaining everything. We had multiple Zoom calls. Jay’s wife was with him, and she provided the Swiss insurance card to UPMC. Now, UPMC had confirmed that there was some confusion, and it took months for Jay to get his bill. He had to call and reach out to UPMC to get his bill. He wants to pay his bill. He wants to pay his fair share, but he doesn’t consider $42,000 a fair share. So he wants to now negotiate the bill. We’ve left it at that, actually. UPMC says they are charging standard charges and that he has not requested financial assistance. And Jay says he would like to negotiate his bill.
Rovner: So that’s where we are. What is the takeaway here? Obviously, “don’t have an emergency in a country where you don’t have insurance” doesn’t feel very practical.
Tribble: Well, yeah, I mean, this was really interesting for me. I’ve been a health care reporter a long time. I’ve heard about travel insurance. The takeaway here for Jay is he would have been wise to get some travel insurance. Now, Jay did tell me previously he had tried to get Medicare. He is a U.S. citizen residing in Switzerland. He does qualify. He had worked in the U.S. long enough to qualify for it. He had gone through some phone calls and so forth and didn’t have it before coming here. He told me in the last couple of weeks that he now has gotten Medicare. However, that may not have helped him too much because it was an outpatient procedure. And it’s important to note that if you have Medicare and you’re 65 in the U.S., when you go overseas, it’s not likely to cover much. So the takeaway: Costs in the U.S. are more expensive than most places in the world, and you should be prepared if you’re traveling overseas and you find yourself in a situation, you might consider travel insurance anyway.
Rovner: So both ways.
Tribble: Yeah.
Rovner: Americans going somewhere else and people from somewhere else coming here.
Tribble: Well, if you’re a contract worker or a student on visa or somebody visiting the U.S., you’re definitely [going to] want to get some insurance because, wherever you’re coming from, most likely that insurance isn’t going to pay the full freight of what the costs are in the U.S.
Rovner: OK. Sarah Jane Tribble, thank you very much.
Tribble: Thanks so much.
Rovner: OK, we’re back, and it’s time for our extra credit segment. That’s where we each recommend a story we read this week that 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. Lauren and Joanne, you’ve already given us yours, so Jessie, you’re next.
Hellmann: Yeah. My extra credit is from MLive.com, an outlet in Michigan. It’s titled “During the Darkest Days of COVID, Some Michigan Hospitals Made 100s of Millions.” They looked at tax records, audited financial statements in federal data, and found that some hospitals and health systems in Michigan actually did really well during the pandemic, with increases in operating profits and overall net assets. A big part of this was because of the covid relief funding that was coming in, but the article noted that, despite this, hospitals were still saying that they were stretched really thin, where they were having to lay off people. They didn’t have money for PPE [personal protective equipment], and they were having to institute, like, other cost-saving measures. So I thought this was a really interesting, like, a local look at how hospitals are kind of facing a backlash now. We’ve seen it in Congress a little bit, just more of an interest in looking at their finances and how they were impacted by the pandemic, because while some hospitals really did see losses, like small, rural, or independent hospitals, some of the bigger health systems came out on top. But you’re still hearing those arguments that they need more help, they need more funding.
Rovner: Well, my story is also about a hospital system. It’s yet another piece of reporting about nonprofit hospitals failing to live up to their requirement to provide, quote, “community benefits,” by our podcast panelist at The New York Times Sarah Kliff and Jessica Silver-Greenberg. It’s called “This Nonprofit Health System Cuts Off Patients With Medical Debt.” And it’s about a highly respected and highly profitable health system based in Minnesota called Allina and its policy of cutting off patients from all nonemergency services until they pay back their debts in full. Now, nonemergency services because federal law requires them to treat patients in emergencies. It’s not all patients. It’s just those who have run up debt of at least $1,500 on three separate occasions. But that is very easy to do in today’s health system. And the policy isn’t optional. Allina’s computerized appointment system will actually block the accounts of those who have debts that they need to pay off. It is quite a story, and yet another in this long list of stories about hospitals behaving badly. 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@kff.org. Or you can tweet me, at least for now. I’m still there. I’m @jrovner. Joanne?
Kenen: @JoanneKenen
Rovner: Jessie.
Hellmann: @jessiehellmann
Rovner: Lauren.
Weber: @LaurenWeberHP
Rovner: We will be back in your feed next week. Until then, be healthy.
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Capitol Desk, Health Care Costs, Health Care Reform, Health Industry, Insurance, Medicaid, Medicare, Multimedia, Pharmaceuticals, Public Health, States, Abortion, Drug Costs, KFF Health News' 'What The Health?', Podcasts, U.S. Congress, Women's Health
¿Mamografías a los 40? Nueva pauta para la detección del cáncer de seno genera debate
Si bien los médicos mayormente aplaudieron la recomendación de un panel designado por el gobierno de que las mujeres comenzaran sus mamografías de rutina para detectar cáncer de mama a partir de los 40 años, en lugar de a los 50, no todos la aprueban.
Algunos médicos e investigadores que están interesados en un enfoque más individualizado para encontrar tumores problemáticos se muestran escépticos y plantean preguntas sobre los datos y el razonamiento detrás del cambio radical del Grupo de Trabajo de Servicios Preventivos de Estados Unidos con respecto a sus pautas de 2016.
“La evidencia para que todas comiencen a los 40 no es convincente”, dijo Jeffrey Tice, profesor de medicina en la Universidad de California-San Francisco.
Tice es parte del equipo de investigación del estudio WISDOM, que tiene como objetivo, en palabras de Laura Esserman, cirujana de cáncer de seno y líder del equipo, “hacer pruebas de manera más inteligente, no probar más”. Esserman lanzó el estudio en curso en 2016 con el objetivo de adaptar las pruebas de detección al riesgo de una mujer, y poner fin al debate sobre cuándo iniciar las mamografías.
Los defensores de un enfoque personalizado enfatizan los costos de la detección universal a los 40, no en dólares, sino en resultados falsos positivos, biopsias innecesarias, sobretratamiento y ansiedad.
Las pautas provienen del Grupo de Trabajo de Servicios Preventivos de Estados Unidos, parte del Departamento de Salud y Servicios Humanos (HHS) federal, un panel independiente de 16 expertos médicos voluntarios que se encargan de ayudar a guiar a los médicos, aseguradoras de salud y legisladores.
En 2009, y de nuevo en 2016, el grupo presentó el aviso actual, que elevó la edad para comenzar la mamografía de rutina de 40 a 50 años e instó a las mujeres de 50 a 74 a hacérselas cada dos años.
Las mujeres de 40 a 49 años que “le otorgan un mayor valor al beneficio potencial que a los daños potenciales” también deberían someterse al procedimiento de detección, dijo el grupo de trabajo.
Ahora, el grupo ha publicado un borrador de una actualización de sus directrices, recomendando la detección para todas las mujeres a partir de los 40 años.
“Esta nueva recomendación ayudará a salvar vidas y evitará que más mujeres mueran debido al cáncer de mama”, dijo Carol Mangione, profesora de medicina y salud pública en UCLA, quien presidió el panel.
Pero la evidencia no es clara. Karla Kerlikowske, profesora de la UCSF que ha estado investigando la mamografía desde la década de 1990, dijo que no vio una diferencia en los datos que justificara el cambio. Dijo que la única forma en que podía explicar las nuevas pautas era un cambio en el panel.
“Son diferentes miembros del grupo de trabajo”, dijo. “Interpretaron los beneficios y los daños de manera diferente”.
Sin embargo, Mangione citó dos puntos de datos como impulsores cruciales de las nuevas recomendaciones: el aumento de la incidencia de cáncer de mama en mujeres más jóvenes, y modelos que muestran la cantidad de vidas que podrían salvar las pruebas de detección, especialmente entre las mujeres negras.
No hay evidencia directa de que evaluar a mujeres de 40 años salve vidas, dijo. La cantidad de mujeres que murieron de cáncer de mama disminuyó de manera constante desde 1992 hasta 2020, debido en parte a una detección más temprana y a mejores tratamientos.
Pero los modelos predictivos que construyó el grupo de trabajo, basados en varias suposiciones en lugar de datos reales, encontraron que expandir la mamografía a mujeres de 40 años podría evitar 1.3 muertes adicionales por cada 1,000 en esa cohorte, dijo Mangione. Lo más crítico, agregó, es que un nuevo modelo que incluye solo mujeres negras mostró que se podría salvar 1.8 por 1,000.
Un aumento anual del 2% en la cantidad de personas de 40 a 49 años diagnosticadas con cáncer de mama en el país entre 2016 y 2019 alertó al grupo de trabajo sobre una tendencia preocupante, dijo.
Mangione lo llamó un “salto realmente considerable”. Pero Kerlikowske lo llamó “bastante pequeño” y Tice lo llamó “muy modesto”: percepciones contradictorias que subrayan cuánta subjetividad está involucrada en la ciencia de las pautas de salud preventiva.
A los miembros del grupo de trabajo los designa la Agencia para la Investigación y la Calidad de la Atención Médica del HHS, y cumplen mandatos de cuatro años. El nuevo borrador de las pautas está abierto para comentarios públicos hasta el 5 de junio. Después de incorporar los comentarios, el grupo de trabajo planea publicar su recomendación final en JAMA, la revista de la Asociación Médica Estadounidense.
Cerca de 300,000 mujeres serán diagnosticadas con cáncer de mama en el país este año, y morirán más de 43,000 por este mal, según proyecciones del Instituto Nacional del Cáncer. Muchos consideran que expandir la detección para incluir a mujeres más jóvenes es una forma obvia de detectar el cáncer antes y salvar vidas.
Pero los críticos de las nuevas pautas argumentan que hay verdaderas concesiones.
“¿Por qué no empezar al nacer?”, ironizó Steven Woloshin, profesor del Instituto de Políticas de Salud y Práctica Clínica de Dartmouth. “¿Por qué no todos los días?”.
“Si no hubiera inconvenientes, eso podría ser razonable”, dijo. “El problema son los falsos positivos, que dan mucho miedo. El otro problema es el sobrediagnóstico”. Algunos tumores de mama son inofensivos y el tratamiento puede ser peor que la enfermedad, enfatizó.
Tice estuvo de acuerdo en que el sobretratamiento es un problema subestimado.
“Estos cánceres nunca causarían síntomas”, dijo, refiriéndose a ciertos tipos de tumores. “Algunos simplemente retroceden, se encogen y desaparecen, son de crecimiento tan lento que una mujer muere de otra cosa antes de que causen problemas”.
Las pruebas de detección tienden a encontrar cánceres de crecimiento lento que tienen menos probabilidades de causar síntomas, dijo. Por el contrario, las mujeres a veces descubren cánceres letales de crecimiento rápido poco después de haberse realizado mamografías que salieron normales.
“Nuestro fuerte sentimiento es que una sola talla no sirve para todos y que debe personalizarse”, dijo Tice.
WISDOM, que significa “Mujeres informadas para evaluar según las medidas de riesgo”, evalúa el riesgo de las participantes a los 40 mediante la revisión de los antecedentes familiares y la secuenciación de nueve genes. La idea es comenzar con mamografías periódicas de inmediato para las mujeres de alto riesgo mientras que esperar para las de menos.
Las mujeres negras no hispanas tienen más probabilidades de hacerse mamografías de detección que las mujeres blancas no hispanas. Sin embargo, tienen un 40% más de probabilidades de morir de cáncer de seno y de que les diagnostiquen cánceres mortales a edades más tempranas.
El grupo de trabajo espera que las mujeres negras se beneficien más de la detección temprana, dijo Mangione.
No está claro por qué las mujeres negras tienen más probabilidades de sufrir cánceres de mama más letales, pero las investigaciones apuntan a disparidades en el tratamiento.
“Las mujeres negras no obtienen un seguimiento de las mamografías tan rápido ni un tratamiento adecuado tan rápido”, dijo Tice. “Eso es lo que realmente impulsa las discrepancias en la mortalidad”.
También continúa el debate sobre la detección en mujeres de 75 a 79 años. El grupo de trabajo optó por no pedir pruebas de detección de rutina en el grupo de mayor edad porque un estudio observacional no mostró ningún beneficio, dijo Mangione. Pero el panel emitió un llamado urgente para investigar si las mujeres de 75 años o más deberían hacerse una mamografía de rutina.
Los modelos sugieren que evaluar a las mujeres mayores podría evitar 2,5 muertes por cada 1,000 mujeres en ese grupo de edad, más de las que se salvarían al expandir la evaluación a las mujeres más jóvenes, apuntó Kerlikowske.
“Siempre decimos que las mujeres mayores de 75 años deberían decidir junto con sus médicos si se hacen mamografías, según sus preferencias, valores, historial familiar y de salud”, dijo Mangione.
Tice, Kerlikowske y Woloshin argumentan que lo mismo es cierto para las mujeres de 40 años.
Esta historia fue producida por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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Aging, Noticias En Español, Race and Health, States, Cancer, HHS, Preventive Services, Preventive Services Task Force, Women's Health
Mammograms at 40? Breast Cancer Screening Guidelines Spark Fresh Debate
While physicians mostly applauded a government-appointed panel’s recommendation that women get routine mammography screening for breast cancer starting at age 40, down from 50, not everyone approves.
Some doctors and researchers who are invested in a more individualized approach to finding troublesome tumors are skeptical, raising questions about the data and the reasoning behind the U.S. Preventive Services Task Force’s about-face from its 2016 guidelines.
“The evidence isn’t compelling to start everyone at 40,” said Jeffrey Tice, a professor of medicine at the University of California-San Francisco.
Tice is part of the WISDOM study research team, which aims, in the words of breast cancer surgeon and team leader Laura Esserman, “to test smarter, not test more.” She launched the ongoing study in 2016 with the goal of tailoring screening to a woman’s risk and putting an end to the debate over when to get mammograms.
Advocates of a personalized approach stress the costs of universal screening at 40 — not in dollars, but rather in false-positive results, unnecessary biopsies, overtreatment, and anxiety.
The guidelines come from the federal Department of Health and Human Services’ U.S. Preventive Services Task Force, an independent panel of 16 volunteer medical experts who are charged with helping guide doctors, health insurers, and policymakers. In 2009 and again in 2016, the group put forward the current advisory, which raised the age to start routine mammography from 40 to 50 and urged women from 50 to 74 to get mammograms every two years. Women from 40 to 49 who “place a higher value on the potential benefit than the potential harms” might also seek screening, the task force said.
Now the task force has issued a draft of an update to its guidelines, recommending the screening for all women beginning at age 40.
“This new recommendation will help save lives and prevent more women from dying due to breast cancer,” said Carol Mangione, a professor of medicine and public health at UCLA, who chaired the panel.
But the evidence isn’t clear-cut. Karla Kerlikowske, a professor at UCSF who has been researching mammography since the 1990s, said she didn’t see a difference in the data that would warrant the change. The only way she could explain the new guidelines, she said, was a change in the panel.
“It’s different task force members,” she said. “They interpreted the benefits and harms differently.”
Mangione, however, cited two data points as crucial drivers of the new recommendations: rising breast cancer incidence in younger women and models showing the number of lives screening might save, especially among Black women.
There is no direct evidence that screening women in their 40s will save lives, she said. The number of women who died of breast cancer declined steadily from 1992 to 2020, due in part to earlier detection and better treatment.
But the predictive models the task force built, based on various assumptions rather than actual data, found that expanding mammography to women in their 40s might avert an additional 1.3 deaths per 1,000 in that cohort, Mangione said. Most critically, she said, a new model including only Black women showed 1.8 per 1,000 could be saved.
A 2% annual increase in the number of 40- to 49-year-olds diagnosed with breast cancer in the U.S. from 2016 through 2019 alerted the task force to a concerning trend, she said.
Mangione called that a “really sizable jump.” But Kerlikowske called it “pretty small,” and Tice called it “very modest” — conflicting perceptions that underscore just how much art is involved in the science of preventive health guidelines.
Task force members are appointed by HHS’ Agency for Healthcare Research and Quality and serve four-year terms. The new draft guidelines are open for public comment until June 5. After incorporating feedback, the task force plans to publish its final recommendation in JAMA, the Journal of the American Medical Association.
Nearly 300,000 women will be diagnosed with breast cancer in the U.S. this year, and it will kill more than 43,000, according to National Cancer Institute projections. Expanding screening to include younger women is seen by many as an obvious way to detect cancer earlier and save lives.
But critics of the new guidelines argue there are real trade-offs.
“Why not start at birth?” Steven Woloshin, a professor at the Dartmouth Institute for Health Policy and Clinical Practice, asked rhetorically. “Why not every day?”
“If there were no downsides, that might be reasonable,” he said. “The problem is false positives, which are very scary. The other problem is overdiagnosis.” Some breast tumors are harmless, and the treatment can be worse than the disease, he said.
Tice agreed that overtreatment is an underappreciated problem.
“These cancers would never cause symptoms,” he said, referring to certain kinds of tumors. “Some just regress, shrink, and go away, are just so slow-growing that a woman dies of something else before it causes problems.”
Screening tends to find slow-growing cancers that are less likely to cause symptoms, he said. Conversely, women sometimes discover fast-growing lethal cancers soon after they’ve had clean mammograms.
“Our strong feeling is that one size does not fit all, and that it needs to be personalized,” Tice said.
WISDOM, which stands for “Women Informed to Screen Depending On Measures of risk,” assesses participants’ risk at 40 by reviewing family history and sequencing nine genes. The idea is to start regular mammography immediately for high-risk women while waiting for those at lower risk.
Black women are more likely to get screening mammograms than white women. Yet they are 40% more likely to die of breast cancer and are more likely to be diagnosed with deadly cancers at younger ages.
The task force expects Black women to benefit most from earlier screening, Mangione said.
It’s unclear why Black women are more likely to get the most lethal breast cancers, but research points to disparities in cancer management.
“Black women don’t get follow-up from mammograms as rapidly or appropriate treatment as quickly,” Tice said. “That’s what really drives the discrepancies in mortality.”
Debate also continues on screening for women 75 to 79 years old. The task force chose not to call for routine screening in the older age group because one observational study showed no benefit, Mangione said. But the panel issued an urgent call for research about whether women 75 and older should receive routine mammography.
Modeling suggests screening older women could avert 2.5 deaths per 1,000 women in that age group, more than those saved by expanding screening to younger women, Kerlikowske noted.
“We always say women over 75 should decide together with their clinicians whether to have mammograms based on their preferences, their values, their health history, and their family history,” Mangione said.
Tice, Kerlikowske, and Woloshin argue the same holds true for women in their 40s.
This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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When an Anti-Vaccine Activist Runs for President
The Host
Julie Rovner
KFF Health News
Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
How should journalists cover political candidates who make false claims about the safety and effectiveness of vaccines? That question will need to be answered now that noted anti-vaccine activist Robert F. Kennedy Jr. has officially entered the 2024 presidential race.
Meanwhile, South Carolina has become one of the last states in the South to pass an abortion ban, making the procedure all but impossible to obtain for women across a broad swath of the country.
This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat, and Sarah Karlin-Smith of the Pink Sheet.
Panelists
Rachel Cohrs
Stat News
Sarah Karlin-Smith
Pink Sheet
Alice Miranda Ollstein
Politico
Among the takeaways from this week’s episode:
- Republican lawmakers and President Joe Biden continue to bargain over a deal to avert a debt ceiling collapse. Unspent pandemic funding is on the negotiating table, as the White House pushes to protect money for vaccine development — though the administration has drawn criticism for a lack of transparency over what would be included in a clawback of unspent dollars.
- In abortion news, South Carolina is the latest state to vote to restrict access to abortion, passing legislation this week that would ban abortion after six weeks of pregnancy — shortly after pregnant people miss their first period. And Texas is seeing more legal challenges to the state law’s exceptions to protect a mother’s life, as cases increasingly show that many doctors are erring on the side of not providing care to avoid criminal and professional liability.
- Congress is scrutinizing the role of group purchasing organizations in drug pricing as more is revealed about how pharmacy benefit managers negotiate discounts. So-called GPOs offer health care organizations, like hospitals, the ability to work together to leverage market power and negotiate better deals from suppliers.
- Lawmakers are also exploring changes to the way Medicare pays for the same care performed in a doctor’s office versus a hospital setting. Currently, providers can charge more in a hospital setting, but some members of Congress want to end that discrepancy — and potentially save the government billions.
- And our panel of health journalists discusses an important question after a prominent anti-vaccine activist entered the presidential race last month: How do you responsibly cover a candidate who promotes conspiracy theories? The answer may be found in a “truth sandwich.”
Also this week, Rovner interviews KFF Health News senior correspondent Aneri Pattani about her project to track the money from the national opioid settlement.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: KFF Health News’ “Remote Work: An Underestimated Benefit for Family Caregivers,” by Joanne Kenen
Alice Miranda Ollstein: Reuters’ “How Doctors Buy Their Way out of Trouble,” by Michael Berens
Rachel Cohrs: ProPublica’s “In the ‘Wild West’ of Outpatient Vascular Care, Doctors Can Reap Huge Payments as Patients Risk Life and Limb,” by Annie Waldman
Sarah Karlin-Smith: The New York Times’ “Heat Wave and Blackout Would Send Half of Phoenix to E.R., Study Says,” by Michael Levenson
Also mentioned in this week’s episode:
- KFF Health News’ “Abortion Bans Are Driving Off Doctors and Closing Clinics, Putting Basic Health Care at Risk,” by Julie Rovner.
- Stat’s “House Panel Takes First Steps Toward Reining In Hospitals With ‘Site-Neutral’ Changes,” by Rachel Cohrs.
- Vice’s “ABC News and CNN Manage to Demonstrate Exactly What Not to Do With Robert F. Kennedy Jr.,” by Anna Merlan.
click to open the transcript
Transcript: When an Anti-Vaccine Activist Runs for President
KFF Health News’ ‘What the Health?’
Episode Title: When an Anti-Vaccine Activist Runs for President
Episode Number: 299
Published: May 25, 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, May 25, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So here we go. Today we are joined via video conference by Rachel Cohrs of Stat News.
Rachel Cohrs: Hi, everybody.
Rovner: Sarah Karlin-Smith of the Pink Sheet.
Sarah Karlin-Smith: Hi, Julie.
Rovner: And Alice Miranda Ollstein of Politico.
Alice Miranda Ollstein: Hello.
Rovner: Later in this episode we’ll have my interview with KFF Health News’ Aneri Pattani about her project tracking where all of that opioid settlement money is going. But first, this week’s news. I suppose we have to start with the debt ceiling again, because how this all eventually plays out will likely impact everything else that happens in Washington for the rest of the year. First of all, as of this taping, at 10 o’clock on Thursday morning, there’s still no settlement here, right?
Ollstein: There is not. And depending who you listen to, we are either close or not close at all, on the brink of disaster or on the brink of being all saved from disaster. There’s a lot of competing narratives going around. But yes, as of this taping, no solution.
Rovner: I want to do a spreadsheet of how often the principals come out and say, “It was productive,” “It’s falling apart,” “It was productive,” “It’s falling apart.” I mean, it seems like literally every other time, particularly when Speaker [Kevin] McCarthy comes out, it was either “very productive” or “we’re nowhere near.” That seems to have been the gist for the past two weeks or so. Meanwhile, it seems like one thing Republicans and Democrats have at least tentatively agreed to do is claw back something like $30 billion in unspent covid funds. But, not so fast. The New York Times reports that the Biden administration wants to preserve $5 billion of that to fund the next generation of covid vaccines and treatment and another $1 billion to continue giving free covid vaccines to people without insurance. I feel like this is the perfect microcosm of why these talks are almost impossible to finish. They’re trying to negotiate a budget resolution, an omnibus spending bill, and a reconciliation bill all at the same time, with the sword of Damocles hanging over their head and a long holiday weekend in between. Somebody please tell me that I’m wrong about this.
Ollstein: Well, Congress never does anything unless there’s a sword of Damocles hanging over them and a vacation coming up that they really want to go on. I mean, do they ever make it happen otherwise? Not — not in our experience. But I do want to note that it is interesting that the Biden administration is trying to fight for some of that covid funding. Meanwhile, what they’re not reportedly fighting for is some of the other public health funding that’s at risk in that clawback, and I reported last week that some of Biden’s own health officials are warning that losing those tens of billions of dollars could undermine other public health efforts, including the fight against HIV and STDs [sexually transmitted diseases]. We have syphilis at record rates right now, and public health departments all around the country are counting on that money to preserve their workforces and do contact tracing, etc. And so that is another piece of this that isn’t getting as much attention.
Cohrs: There has been this ongoing fight between the White House and Republicans over covid money and how it’s being spent, for years at this point. And the White House has never really been fully transparent about exactly what was going to get clawed back. The Appropriations Committee was the one who actually put out some real information about this. And I think that trust has just been broken that the money is used where it’s supposed to be. I mean, even for the next-generation research project [Project NextGen] — I mean, they launched that like a couple of months ago, after Republicans had already threatened to take the money back. So I think there are some questions about the timing of the funding. [White House COVID-19 Response Coordinator] Ashish Jha said they didn’t know they had leftovers until recently, but I think this has just really turned into a mess for the White House, and I think the fact that they’re willing to offer some of this money up is just kind of a symbol and just a “ending with a whimper” of this whole fight that’s been going on for two years where they’ve been unsuccessful in extracting any more money.
Rovner: And yeah, I was just going to say, the White House keeps asking for more money and then they keep, quote-unquote, “finding money” to do things that are really important. Sarah, I wanted to ask you, how freaked out is the research establishment and the drug industry at whether, you know, will they or won’t they actually pony up money here?
Karlin-Smith: I think this could be pretty problematic because some of the type of companies that get this funding — some of them might be in a position to do this on their own, but others would essentially — you know, there isn’t necessarily a market for this without the government support, and that’s why they do it. That’s why the U.S. created this BARDA [Biomedical Advanced Research and Development Authority], which kind of funds this type of pandemic and other threats research. And so I think there are companies that definitely wouldn’t be able to continue without this money, because some of it is for things that we think we might need but don’t know if we definitely will. And so you don’t necessarily want to make the investment in the same way you know you need cancer drugs or something like that.
Rovner: We will see how this plays out. Perhaps it will be played out by next week or perhaps they will find some sort of short-term patch, which is another tried-and-true favorite for Congress. All right. Let’s turn to abortion. Last week, the North Carolina Legislature overrode the Democratic governor’s veto to pass a 12-week ban. This week was the South Carolina Legislature’s chance to say, “Hold my beer.” Alice, what happened in South Carolina, and what does it mean for availability of abortion in the whole rest of the South?
Ollstein: The governor is expected to sign this new restriction into law. Like many other GOP-led states. South Carolina was expected to quickly pass restrictions last year as soon as Roe v. Wade was overturned, but they got into fights within the Republican Party over how far to go, whether to have exceptions, what kind of exceptions, etc. It was the classic story we’ve seen play out over and over and over where, while Roe v. Wade was still in place, it was very easy for people to say, “I’m pro-life, I’m against abortion,” and not have to make those difficult, detailed decisions. So, yes, this could have a big impact, you know, especially with Florida moving for a much stricter ban. You know, the whole region is becoming more and more unavailable, and people are going to have to travel further and further.
Rovner: And South Carolina ended up with one of these six-week, quote-unquote, “heartbeat bills,” right?
Ollstein: That’s right.
Rovner: So it’s sort of shutting off yet another state where abortion is or really could be available. There’s more abortion-related court action, too. This week, in Texas, eight more women who experienced dangerous pregnancy complications joined a lawsuit seeking to force just a clarification of that state’s abortion ban that they say threatened their lives. One of them, Kiersten Hogan, had her water break prematurely, putting her at risk of infection and death, but says she was told by the hospital that if she tried to leave to seek care elsewhere, she could be arrested for trying to kill her baby. Four days later, the baby was born stillborn. Yet sponsors of the state’s abortion bill say it was never intended to bar, quote, “medically necessary abortions.” Why is there such a disconnect? And Texas is hardly the only place this is happening, right?
Ollstein: Yeah. Situations like this are why people are arguing that the whole debate over exceptions is sort of a fig leaf. It’s papering over how these work in practice. You can have exceptions on the book that say “life-threatening situations, medical emergencies,” etc. But because doctors are so afraid of being charged with a crime or losing their license or other professional repercussions, that’s just creating a huge chilling effect and making them afraid to provide care in these situations. A lot of times the state law also contradicts with federal law when it comes to medical emergencies, and so doctors feel caught in the middle and unsure what they’re supposed to do. And as we’re seeing, a lot of them are erring on the side of not providing care rather than providing care. So this is playing out in a lot of places. So I’m interested to see if this informs the debate in other states about whether to have these exceptions or not.
Rovner: And I get to promote my own story here, which is that we’re seeing in a lot of states either doctors leaving or doctors deciding not to train in states with abortion bans because they’re afraid of exactly those restrictions that could land them, you know, either in court or, even worse, in jail. We’ve long had abortion care deserts. Now we could see entire women’s health care deserts in a lot of these states, which would, you know, hurt not just the people who want to have abortions, but the people who want to get pregnant and have babies. We will continue to watch that space. Well, meanwhile, in West Virginia, another court case, filed by the maker of the generic version of the abortion pill mifepristone, could turn on a recent Supreme Court decision about pork products in California. Can somebody explain what one has to do with the other?
Karlin-Smith: There is basically a ruling that the Supreme Court issued the other week in a California case where the state was regulating how pigs were treated on farms in California. And the court basically allowed the law to stand, saying, you know, it didn’t interfere with interstate commerce. And the people who are protesting GenBioPro’s suit in West Virginia are basically saying that this, again, is an example where West Virginia’s regulation of the abortion drug, again, doesn’t really impact the distribution of the drug outside of the state or the availability of the drug outside of the state, and so this should be allowable. Of course, GenBioPro and the folks who are protesting how West Virginia is curtailing access to the suit are trying to argue the same ruling helps their cause. To me, what I read — and it seems like the comparison works better against the drug company, but it always is interesting to see this overlapping — you know, the cases you don’t expect. But I also, I think, when this ruling came out, saw somebody else making another argument that this should help GenBioPro. So it’s very hard to know.
Rovner: If it’s not confusing enough, I’m going to add another layer here: While we’re talking about the abortion pill, a group of House Democrats are reaching out to drug distribution company AmerisourceBergen, following reports that it would decline to deliver the pill to pharmacies in as many as 31 states, apparently fearing that they would be drawn into litigation between states and the federal government, the litigation we’ve talked about now a lot. So far, the company has only said that it will distribute the drug in states, quote, “where it is consistent with the law.” In the end, this could end up being more important than who wins these lawsuits, right? If — I think they’re the sole distributor — is not going to distribute it, then it’s not going to be available.
Ollstein: It also depends on the — at the 5th Circuit, and that will go back to the Supreme Court, because if it’s not an FDA-approved drug, then nobody can distribute it. That’s the ultimate controlling factor. But yes, since they are the sole distributor, they will have a lot of power over where this goes. And when I was reporting on Walgreens’ decision, they were pointing to this and saying that their decisions, you know, depend on other factors as well.
Karlin-Smith: And there’s a lot of nuance to this because my understanding is AmerisourceBergen, they’re particularly talking about distributing it to pharmacies where you could — under this new FDA permission to let pharmacies distribute the drug, which in the past they hadn’t.
Rovner: And which hasn’t happened yet.
Karlin-Smith: Right. They haven’t actually gone through the process of certifying the pharmacies. So it’s like a little bit premature, which is why I think Walgreens realized they probably jumped the gun on making any decision because it couldn’t happen yet anyway. But AmerisourceBergen is still saying, “Oh, we’re giving it to providers and other places that can distribute the drug in some of these states.” So it’s not necessarily like the drug is completely unavailable. It’s just about ease of access, I think, at this point.
Rovner: Yeah, we’re not just in “watch that space”; now we’ve progressed to “watch all those spaces,” which we will continue to do. Well, while we were on the discussion of drug middlepeople, there’s a story in Stat about the Federal Trade Commission widening its investigation of pharmacy benefit managers to include group purchasing organizations. Sarah, what are group purchasing organizations and how do they impact the price of prescription drugs?
Karlin-Smith: So group purchasing organizations are basically where you sort of pool your purchasing power to try and get better deals or discounts. So like, in this case, one of the GPOs FTC is looking at negotiates drug rebates on behalf of a number of different PBMs, not just one PBM. And so, again, you know, the idea is the more people you have, the more marketing you have, the better discount you should be able to get, which is — I think some people have been a little shocked by this because they’re like, “Wait, we thought the PBMs were the ones that did the negotiation. Why are they outsourcing this? Isn’t that the whole purpose of why they exist?” Yeah, so FTC has sort of a broader investigation into PBMs, so this is kind of the next step in it to kind of figure out, OK, what is the role of these companies? How are they potentially creating bad incentives, contributing to increased drug pricing, making it harder for people to perhaps, like, get their drug at particular pharmacies or more expensive at particular pharmacies? Again, because there’s been a lot of integration of ownership of these companies. So like the PBMs, the health insurance, some of these pharmacy systems are sort of all connected, and there’s a lot of concern that that’s led to incentives that are harming consumers and the prices we’re paying for our health care.
Rovner: Yeah, there’s all that money sloshing around that doesn’t seem to be getting either to the drug companies or to the consumers. Rachel, you wanted to add something?
Cohrs: Sure. I think GPOs are more used with hospitals when they buy drugs, because I think PBMs — you think of, like, going to pick up your drug at the pharmacy counter. But obviously hospitals are buying so many drugs, too. And their, you know, market power is pretty dispersed across the country. And so they also are a big customer of GPOs. So I think they’re also trying to get at this, like, different part of the drug market where, you know, a lot of these really expensive medications are administered in hospitals. So it will be interesting. They’re certainly not very transparent either. So, yeah, interesting development as to how they relate to PBMs, but also the rest of — you know, encompassing a larger part of the health care system.
Karlin-Smith: Yeah, I have seen complaints from hospital systems that the GPOs require them to enter into contracts that make it very difficult for the hospital to pivot if, say, the GPO can’t supply them with a particular product or maybe it’s … [unintelligible] … and then they end up stuck in a situation where they should, in theory, be able to get a product from another supplier and they can’t. So there’s lots of different levels of, again, concern about potential bad behavior.
Rovner: Well, while we are on the topic of nerdy practice-of-medicine stuff, Rachel, you had a story on the latest on the, quote, “site-neutral” Medicare payment policy. Remind us what that is and who’s on which side, and wasn’t that one of the bills — or I guess that wasn’t one of the bills that was approved by the House Energy and Commerce Committee yesterday, right?
Cohrs: No, so “site neutral” is basically hospitals’ worst nightmare. It essentially makes sure that Medicare is paying the same amount for a service that a doctor provides, whether it’s on a hospital campus or provided in a doctor’s office. And I think hospitals argue that they need to charge more because they have to be open 24/7. You know, they don’t have predictable hours. They have to serve anyone, you know, regardless of willingness to pay. It costs more overhead. That kind of thing. But I think lawmakers are kind of losing patience with that argument to some degree, that the government should be paying more for the same service at one location versus another. And it’s true that House Republicans had really wanted an aggressive form of this policy, and it could save like tens of billions of dollars. I mean, this is a really big offset we’re talking about here, if they go really aggressively toward this path, but instead they weren’t able to get Democrats on board with that plan yet. I think the chair, Cathy McMorris Rodgers, and the ranking member, Frank Pallone, have said they want to keep working on this. But what they did do this week is took a tiny little part out of that and advanced it through the committee. And it would equalize payment for, like, drug administration in physician’s offices versus a physician doing it in the hospital, and the savings to the federal government on that policy was roughly $3 billion. So, again, not a huge hit to industry, but it’s, you know, significant savings, certainly, and a first step in this direction as they think about how they want to do this, if they want to go bigger.
Rovner: So while we’re talking about the Energy and Commerce Committee, those members, in a fairly bipartisan fashion, are moving a bunch of other bills aimed at price transparency, value-based care, and a lot of other popular health buzzwords. Sarah, I know you watched, if not all, then most of yesterday’s markup. Anything in particular that we should be watching as it perhaps moves through the House and maybe the Senate?
Karlin-Smith: Yeah. So there was — probably the most contentious health bill that cleared yesterday was a provision that basically would codify a Trump-era rule in Medicaid that the Biden administration has sort of tweaked a bit but generally supported that basically tweaks Medicaid’s “best price” rule. So Medicaid is kind of guaranteed the best price that the private sector gets for drugs. But drugmakers have argued this prevents them from doing these unique value-based arrangements where we say, “OK, if the patient doesn’t perform well or the drug doesn’t work well for the patient, we’ll kind of give you maybe even all your money back.” Well, they don’t want the Medicaid best price to be zero. So they came up with a kind of a very confusing way to tweak that and also as part of that to, you know, hopefully allow Medicaid to maybe even take advantage of these programs. And Rep. [Brett] Guthrie [(R-Ky.)], Rep. [Anna] Eshoo [(D-Calif.)] on the Democratic side, want to codify that. But a number of the Democrats pushed back and over worries this might actually raise prices Medicaid pays for drugs and be a bit more problematic. And the argument from the Democrats, the majority of Democrats on the committee who oppose it, were not completely against this idea but let it play out in rulemaking, because if it stays in rulemaking, it’s a lot easier to —er, sorry — as a rule, it’s already made.
Rovner: To fix it if they need to.
Karlin-Smith: Right. It’s a lot easier to fix it, which, as anybody who follows health policy knows, it’s not actually as easy as you would think to fix a rule, but it’s definitely a lot easier to fix a rule than it is to fix something codified in law. So that’s sort of a very wonky but meaningful thing, I think, to how much drugs cost in Medicaid.
Rovner: Last nerdy thing, I promise, for this week: The Biden administration says it plans to conduct an annual audit of the cost of the most expensive drugs covered by Medicaid and make those prices public in what one of your colleagues, Alice, described as a “name and shame” operation? I mean, could this actually work, or could it end up like other HHS [Department of Health and Human Services] transparency rules, either not very followed or tied up in court?
Karlin-Smith: Experts that my colleague Cathy Kelly talked to to write about this basically were not particularly optimistic it would lead to big changes in savings to Medicaid, basically. One of the reasons is because Medicaid actually gets pretty good deals on drugs to begin with. But that said, even, again, like I said, they’re guaranteed these really large rebates are the best price. But in exchange for that, they have to cover all drugs. So that’s where you start to lose some of your leverage. So the hope with some of this extra transparency is they’ll get more information to have, like, a little bit of additional leverage to say, “Oh, well your manufacturing costs are only this, so you should be able to give us an additional rebate,” which they can negotiate that. Again, I think people think there’ll be sort of maybe some moderate, if any, benefits to that. But some states have actually tried similar things in kind of similar “name, shame” affordability boards. And the drugmakers have basically just said, “No, we’re not going to give you any more discounts.” And they’re kind of stuck.
Rovner: “And we’re not ashamed of the price that we’re charging.”
Karlin-Smith: Right.
Rovner: “Or we wouldn’t be charging it.”
Karlin-Smith: So it’s a tough one, but there’s, like, an argument to be made that drugmakers just don’t want to be on this list. So maybe some of them will more proactively figure out like how to get their price point and everything discounts to a point where they at least won’t get on the list. So maybe, again, it might tweak things around the edges, but it’s not a big price savings move.
Rovner: And we shall see. All right. Well, this is — finally this week, it’s something I’ve wanted to talk about for a couple of weeks. I’m calling it the “How do you solve a problem like RFK Jr.?” For those of you who don’t already know, the son of the former senator and liberal icon Robert Kennedy has declared his candidacy for president. He’s an environmental lawyer, but at the same time, he’s one of the most noted anti-vaxxers, not just in the country but in the world. Vice has a provocative story — this actually goes back a couple of weeks — about how the media should cover this candidacy or, more specifically, how it shouldn’t. According to the story, ABC did an interview with RFK Jr. and then simply cut out what they deemed the false vaccine claims that he made. CNN, on the other hand, did an interview and simply didn’t mention his anti-vaccine activism. I am honestly torn here about how should you cover someone running for president who traffics in conspiracy theories that you know are not true? I realize here I am now speaking of a wider — wider universe than just RFK Jr. But as a journalist, I mean, how do you handle things that — when they get repeated and you know them to be untrue, at least in the health care realm?
Karlin-Smith: I mean, I really like the thing that Vice mentioned, and I think maybe Jay Rosen, who’s a journalism professor at NYU [New York University], he might be the person that sort of coined this, I’m not sure — this, like, “truth sandwich” idea, where you make sure you sort of start with what is true, in the middle you put the sort of — this is what the false claim of X person — and then you go back to the truth. Because I think that really helps people grasp onto what’s true, versus a lot of times you see the coverage starts with the lie or the falsehood. And I think sometimes people might even just see that headline or just see the little bit of what’s correct and never make it to the truth. And I understand some of the decisions by the news outlets that decided not to air these segments and just didn’t want to deal with the topic. But then I guess I thought they did make a good point that then you let somebody like Kennedy say, “Oh, they’re suppressing me, they’re deliberately hiding this information.” So the Vice argument was that this truth sandwich idea kind of gets you in a better … [unintelligible]. And again, as journalists, our job is not to suppress what politicians are saying. People should know what these people claim, because that is what the positions they stand for. But it’s figuring out how to add the context and be able to, you know, in real time if you need to, fact-check it.
Rovner: I confess, over the years I have been guilty of the CNN thing of just not bringing it up and hoping it doesn’t come up. But then, I mean, it’s true, the worst-case scenario — probably not going to happen with somebody running for president — but I think we’ve discovered all these people running for lower offices, that they get elected, you don’t talk about the controversial things and then you discover that you have a legislator in office who literally believes that the Earth is flat. There are — can Google that. So if these things aren’t aired, then there’s no way for voters to know. Anybody else have a personal or organizational rule for how to handle this sort of stuff?
Ollstein: I think there can be smart decisions about when to let someone say in their own voice what they believe versus saying as the news organization, “In the speech, he spent X minutes advancing the discredited assertion of blah, blah, blah, blah, blah,” and not just handing over the platform for them to share the misinformation.
Rovner: Yeah, I just want the audience to know that we do think seriously about this stuff. We are not just as sort of blithe as some may believe. All right. Well, that is this week’s news. Now, we will play my interview with Aneri Pattani, and then we will come back with our extra credits. I am pleased to welcome back to the podcast my colleague Aneri Pattani, who is here to talk about her investigation into where those billions of dollars states are getting in pharmaceutical industry settlements for the opioid crisis are actually going. Aneri, I am so glad to have you back.
Aneri Pattani: Thanks so much for having me.
Rovner: So let’s start at the beginning. How much money are we talking about? Where’s it coming from, and where is it supposed to be going?
Pattani: So the money comes from companies that made, distributed, or sold opioid painkillers. So these are places like Purdue Pharma, AmerisourceBergen, Walgreens, and a bunch of others. They were all accused of aggressively marketing the pills and falsely claiming that they weren’t addictive. So thousands of states and cities sued those companies. And rather than go through with all the lawsuits, most of the companies settled. And as a result, they’ve agreed to pay out more than $50 billion over the next 15 or so years. And the money is meant to be used on opioid remediation, which is a term that means basically anything that addresses or fixes the current addiction crisis and helps to prevent future ones.
Rovner: So the fact is that many or most states — we don’t actually know where this money is going or will go in the future because that information isn’t being made public. How is that even legal, or, I guess it’s not public funds, but it’s funds that are being obtained by public entities, i.e., the attorneys general.
Pattani: Yeah, a lot of people feel this way. But the thing is, the national settlement agreements have very few requirements for states to publicly report how they use the money. In fact, the only thing that’s in there that they’re required to report is when they use money for non-opioid purposes. And that can be at most 15% of the total funds they’re getting. And that reporting, too, is on an honor system. So if a state doesn’t report anything, then the settlement administrators are supposed to assume that the state used all of its money on things related to the opioid crisis. Now, states and localities can enact stricter requirements. For example, North Carolina and Colorado are two places that have created these public dashboards that are supposed to show where the money goes, how much each county gets, how the county spends it. But honestly, the vast majority of states are not taking steps like that.
Rovner: So for people of a certain age, this all feels kind of familiar. In the late 1990s, a group of state attorneys general banded together and sued the tobacco companies for the harm their products had done to the public. They eventually reached a settlement that sent more than $200 billion to states over 25 years, so that money is only just now running out. But it didn’t all get used for tobacco cessation or even public health, did it?
Pattani: No. In fact, most of it didn’t get used for that. The Campaign for Tobacco-Free Kids, which has been tracking that tobacco settlement money for years, found that about only 3% of the money goes to anti-smoking programs a year. The rest of it has gone towards plugging state budget gaps, infrastructure projects like paving roads, or, in the case of North Carolina and South Carolina, the money even went to subsidizing tobacco farmers.
Rovner: Great. Given the lessons of the tobacco settlement, how do the attorneys general in this case try to make sure that wasn’t going to happen? I mean, was it just by requiring that that non-opioid-related money be made public?
Pattani: So they have added some specific language to the settlements that they point to as trying to avoid, you know, the, quote, “tobacco nightmare.” Essentially, the opioid settlements say that at least 85% of the money must be spent on opioid remediation. Again, that term — that’s like things that stop and prevent addiction. And there’s also a list included at the end of the settlement, called Exhibit E, with potential expenses that fall under opioid remediation. That’s things like paying for addiction treatment for people who don’t have insurance or building recovery housing or funding prevention programs in schools. But the thing is, that list is pretty broad and it’s nonexhaustive, so governments can choose to do things that aren’t on that list, too. So there are guidelines, but there’s not a lot of hard enforcement to make sure that the money is spent on these uses.
Rovner: So, as you’ve pointed out in your reporting, it’s not always simple to determine what is an appropriate or an inappropriate use of these settlement funds, particularly in places that have been so hard-hit by the opioid crisis and that it affects the entire economy of that state or county or city. So tell us what you found in Greene County, Tennessee. That was a good example, right?
Pattani: Yeah, Greene County is an interesting place. And what I learned is happening there is actually, you know, repeating in a lot of places across the country. So Greene County, it’s an Appalachian county, it’s been hard-hit. It has a higher rate of overdose deaths than the state of Tennessee overall or even the country. But when the county got several million dollars in opioid settlement funds, it first put that money towards paying off the county’s debt. And that included putting some money into their capital projects fund, which was then used to buy a pickup truck for the sheriff’s office. So a lot of folks are looking at that, saying, “That’s not really opioid-related.” But county officials said to me, you know, this use of the money makes sense, because the opioid epidemic has hurt their economy for decades; it’s taken people out of the workforce, it’s led to increased costs for their sheriff’s office and their jail with people committing addiction-related crimes, it’s hurt the tax base when people move out of the county. So now they need that money to pay themselves back. Of course, on the other hand, you have advocates and people affected by the crisis saying, “If we’re using all the money now to pay back old debts, then who’s addressing the current crisis? People are still dying of overdoses, and we need to be putting the opioid settlement money towards the current problem.”
Rovner: So I suppose ideally they could be doing both.
Pattani: I think that’s the hard thing. Although $54 billion sounds like a lot of money, it’s coming over a long period of time. And so at the end of the day, it’s not enough to fund every single thing people want, and there is a need for prioritization.
Rovner: So I know part of your project is helping urge local reporters to look into where money is being used in their communities. How is that going?
Pattani: It’s going well. I think it’s important because the money is not only going to state governments, but to counties and cities too. So local reporters can play a really big role in tracking that money and holding local officials accountable for how they use it. So I’m trying to help by sharing some of the national data sets we’re pulling together that can be used by local reporters. And I’ve also hopped on the phone with local reporters to talk about where they can go to talk to folks about this or finding story ideas. Some of the reporters I’ve spoken with have already published stories. There was one just a week ago in the Worcester Telegram from a student journalist, actually, in that area —
Rovner: Cool.
Pattani: — so there’s a lot of good coverage coming.
Rovner: I’m curious: What got you interested in pursuing this topic? I know you cover addiction, but this is the kind of reporting that can get really frustrating.
Pattani: It definitely can. But I think it’s what you said: As someone who’s been covering addiction and mental health issues for a while, kind of focusing on some of the problems and the systemic gaps, when I learned that this money was coming in, it was exciting to me too, like, maybe this money will be used to address the issues that I’m often reporting on, and so I want to follow that and I want to see if it delivers on that promise.
Rovner: So what else is coming up in this project? I assume it’s going to continue for a while.
Pattani: Yes. So this will be a yearlong project, maybe even more, because, as I said, the funds are coming for a long time. But essentially the next few things I’m looking at, I have a big data project looking at who sits on opioid settlement councils. These are groups that advise or direct the money in different states and, you know, may represent different interests. And then we’re going to be looking at some common themes in the ways different states are using this money. So a lot of them are putting it towards law enforcement agencies, a lot of them are putting them toward in-school prevention programs, and taking a look at what the research tells us about how effective these strategies are or aren’t.
Rovner: Well, Aneri Pattani, thank you so much, and we will post links to some of Aneri’s work on the podcast homepage at kffhealthnews.org and in this week’s show notes. Thanks again.
Pattani: Thank you so much.
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 looked at a piece in The New York Times called “Heat Wave and Blackout Would Send Half of Phoenix to E.R., Study Says,” by Michael Levenson. And it’s just really sort of a horrifying piece where researchers were sort of able to model the impact of the growing frequency of heat waves due to climate change, and obviously, the U.S. had some electric grid stability issues, and just the disconnect between the amount of hospital beds and people that would be able to care for people in a very hot city due to, you know, heat waves without being able to access air conditioning and other cooling methods. And the amount of people that would be hospitalized or die or just wouldn’t have a hospital bed. The one thing I did think was sort of positive is the piece does have some suggestions, and some of them are fairly simple that could really change the degrees in cities in relevant ways, like planting more trees in particular areas, and often this affects sort of — the poorest areas of cities tend to be the ones with less trees — or, you know, changing colors or the material on roofing. So as much as sometimes I think climate change becomes sort of such an overwhelming topic where you feel like you can’t solve it, I think the one nice thing here is it does sort of show, like, we have power to make the situation better.
Rovner: We can perhaps adapt. Alice.
Ollstein: I picked a upsetting piece but really good investigation from Reuters by Michael Berens. It’s called “How Doctors Buy Their Way out of Trouble.” It’s about doctors who are charged federally with all kinds of wrongdoing, including operating on patients who don’t need to be operated on for profit and having a pattern of doing so. And it’s about how often these cases settle with federal prosecutors and the settlement allows them to keep practicing, and the settlement money goes to the government, not to the victims. And often the victims aren’t even aware that the settlement took place at all. And new patients are not aware that the doctor they may be going to has been charged. And so it’s a really messed up system and I hope this shines a light on it.
Rovner: Rachel.
Cohrs: All right. So mine is from ProPublica, and the headline is, “In the ‘Wild West’ of Outpatient Vascular Care, Doctors Can Reap Huge Payments as Patients Risk Life and Limb,” by Annie Waldman. And I think I found this story timed really well kind of as lawmakers do start to talk a little bit more about incentives for patients to be seen in a hospital versus in more physician offices. And certainly there are cost reasons that that makes sense for some procedures. But I think this story does a really good job of kind of following one doctor, who I think, similar to kind of the story Alice was talking about, you know, was taking advantage of these inflated payments that were supposed to incentivize outpatient treatment to perform way more of these procedures than patients needed. And so I think it’s just important, a cautionary tale about the safeguards that could be necessary, you know, if more of this care is provided elsewhere.
Rovner: Yeah, I think these two stories are very good to be read together. My story this week is from our fellow podcast panelist Joanne Kenen for KFF Health News. It’s called “Remote Work: An Underestimated Benefit for Family Caregivers,” and it’s about how the U.S., still one of the few countries without any formal program for long-term care, that most of us will need at some point, has accidentally fallen into a way to make family caregiving just a little bit easier by letting caregivers do their regular jobs from home, either all the time or sometimes. While many, if not most, employers have policies around childbirth and child care, relatively few have benefits that make it easier for workers to care for other sick family members, even though a fifth of all U.S. workers are family caregivers. More flexible schedules can at least make that a little easier and possibly prevent workers from quitting so that they can provide care that’s needed. It’s no substitute for an actual national policy on long-term care, but it’s a start, even if an accidental one. 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. And next week is our 300th episode. If all goes as planned, we’ll have something special, so be sure to tune in. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m still there. I’m @jrovner. Sarah?
Karlin-Smith: I’m @SarahKarlin.
Rovner: Alice.
Ollstein: @AliceOllstein.
Rovner: Rachel.
Cohrs: @rachelcohrs.
Rovner: We will be back in your feed next week. Until then, be healthy.
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Elections, Health Care Costs, Medicare, Multimedia, Pharmaceuticals, Public Health, States, Abortion, Drug Costs, KFF Health News' 'What The Health?', Opioids, Podcasts, Prescription Drugs, South Carolina, U.S. Congress, vaccines, Women's Health
This Panel Will Decide Whose Medicine to Make Affordable. Its Choice Will Be Tricky.
Catherine Reitzel’s multiple sclerosis medication costs nearly $100,000 a year. Kris Garcia relies on a drug for a blood-clotting disorder that runs $10,000 for a three-day supply. And Mariana Marquez-Farmer would likely die within days without her monthly $300 vial of insulin.
At best, a Colorado panel of medical and pharmacy experts seeking to cut the costs of expensive drugs will be able to help only one of them.
Starting this summer, the state’s Prescription Drug Affordability Board will choose up to 18 high-cost drugs for review over the next three years to determine if the medications are unaffordable and whether to cap what health plans and consumers pay for them.
But with hundreds of expensive drugs to choose from, the board members face tough decisions about who will get help now and who will have to wait.
Do they tackle drugs with extremely high costs taken by only a handful of patients, or drugs with merely very high costs taken by a larger group? Should they consider only out-of-pocket costs paid by consumers, such as for insulin, whose copays Colorado caps at $50 a month, or the total cost of the drug to the health system? Will they weigh only drug prices, or will they try to right social wrongs with their choices?
And what does “affordable” even mean?
“That question alone is a lot harder to answer than it might seem at face value,” said Jennifer Reck, project director for the National Academy for State Health Policy’s Center for State Prescription Drug Pricing. “You immediately get into how utterly complex our drug supply chain is, how opaque it is, how many different prices there are,” she said.
Maryland was the first state to establish a drug affordability board in 2019, but funding challenges and the pandemic have slowed its progress. Colorado passed a bill creating its board in 2021 and has already moved ahead of Maryland in the process. Washington followed in 2022 but is still in its early phases of implementation.
Maine, New Hampshire, Ohio, and Oregon have also established boards, but they lack the power to limit drug payments. And at the federal level, the Inflation Reduction Act of 2022 included a provision requiring the Health and Human Services secretary to negotiate prices with drug companies for a small number of the most costly medications covered by Medicare.
It’s taken years for the Colorado and Maryland board members to create all the rules and regulations to govern their work before getting to the point of looking at specific drugs.
“It’s just a long, tortuous government process to get things up and running,” said Gerard Anderson, a professor of health policy and management at Johns Hopkins University, and a member of Maryland’s board. “You basically have to dot every ‘i’ and cross every ‘t’ in order not to get sued.”
Setting Priorities
On May 12, Colorado released its first list of hundreds of drugs eligible for review, mostly because they each cost more than $30,000 for a course of treatment. Next month, they’ll release a dashboard ranking those drugs according to the board’s priorities. The dashboard can also be used to examine which drugs have the highest price tags, which have had the largest increases in price, and which the state spends the most on. That would allow the board to begin affordability reviews this summer and set payment limits for the first four to eight drugs sometime in 2024. But board members will first have to set their priorities, and those could change from year to year.
“Maybe one year we focus on the impact to the system, and another year we focus on out-of-pocket costs, and one year we focus on a lifesaving drug that has smaller utilization,” said Lila Cummings, director of the Colorado board.
Such approaches could pit one group of patients against others looking for cost relief. But Cummings said not all groups are eager to see payment limits.
“Some of them said, ‘We want the board to focus on our drugs,’ and others said, ‘Please leave us alone,’” she said.
That reluctance likely reflects the close ties that some patient groups have with the manufacturers of their medications, including receiving funding from the drugmakers.
“We have seen cases in public hearings — it seems counterintuitive or surprising — where a patient group, instead of being thrilled that they might have access to the drugs at a lower price, instead are arguing against upper payment limits,” Reck said. “But in most cases, there’s a pretty clear financial connection to drug manufacturers.”
Maryland has also received input from patient groups as it finalizes its regulations.
“So far it has not been, ‘Pick me! Pick me! Pick me!’” Anderson said. But that could change once the Maryland board begins its affordability reviews this fall.
The drug that Garcia, 47, of Denver, takes did not make the board’s list. Diagnosed with four bleeding disorders, including von Willebrand disease, he needs the medication Humate-P, made by CSL Behring, to replace one of the clotting factors missing in his blood. This winter, driving home from his job at the airport, Garcia hit a patch of black ice, spun out, and careened into a concrete barrier at 75 mph. He needed the expensive medication every day for the first five days after the accident, and then every other day for a full month.
“It’s not like I can just sit there and say no to this medication, because my bleeds get so bad,” he said.
According to Perry Jowsey, executive director of the National Hemophilia Foundation’s Colorado chapter, about 300 to 400 individuals are being treated for von Willebrand disease in Colorado. That’s far fewer than the roughly 10,000 Coloradans with MS or the 74,000 who manage their diabetes with insulin.
“In my shoes, I would target what would help the most people,” Garcia said. “You have to find a balance, especially starting out. You’re not going to be able to help everyone.”
The Colorado and Maryland boards will rely on data from state databases that show how much various public and private health plans pay for drugs. That data, however, doesn’t capture what uninsured patients pay, and it doesn’t give any insight into how much manufacturers pay for research and development.
“The goal is not to stifle innovation,” Anderson said. “But we can’t get any public data, so we have to ask the pharmaceutical industry, and they’re not required to give us the data.”
The boards want to ensure that patients like Reitzel still have access to new and better therapies. Reitzel, 38, of Highlands Ranch, was diagnosed with multiple sclerosis in 2008 and has switched medications several times seeking one whose side effects she could tolerate. “They’re all terrible in their own special way,” she said.
In 2021, she began taking a relatively new drug from Biogen and Alkermes called Vumerity, which was included on Colorado’s list of eligible drugs. But the cost of a three-month supply was nearly $24,000, including a copay of more than $7,000. Biogen provides up to $20,000 in annual copay assistance through a debit card she can use at the pharmacy. But now her health plan no longer credits those payments toward her deductible. It makes it almost impossible for her to meet the $25,000 out-of-pocket maximum under her plan.
“Primarily for this reason, I am no longer taking any medication,” Reitzel said, “and have to only hope my disease does not progress.”
Colorado legislators passed a bill to require health plans to count copay assistance programs toward patients’ deductibles for drugs with no generic equivalents, but that provision does not take effect until 2025.
Insulin as an Outlier?
Just a couple of years ago, insulin may have been a higher priority for drug affordability boards, but now it’s not so clear. Both Colorado and Maryland have established insulin copay caps that provide pocketbook relief, at least for patients with coverage. And manufacturers are making their own moves to lower insulin prices. That could prompt the boards to bypass insulin and concentrate their limited resources on other high-cost drugs.
Copay caps do not lower the actual cost of insulin but instead spread it among members of the health plan through higher premiums. The Colorado copay caps don’t help new state residents and initially did not help those without insurance, either. Both of those hurdles would have applied to Marquez-Farmer when she moved from California to Colorado Springs a couple of years ago.
“I got married to my husband during covid because I didn’t have insurance,” she said. “I loved him, and it all worked out, but a big reason for me to marry him was because I would not be able to afford insulin.”
Marquez-Farmer, 34, said that while insulin may not be the most expensive drug on the market, many Coloradans, particularly those from marginalized communities who have higher rates of diabetes, struggle to afford it.
“I’m not saying the other medicines are not important, because obviously they are,” she said. “The reality is there’s more people who are being affected by not being able to afford their insulin and a lot of people who are dying because of them rationing insulin.”
Andrew York, executive director of the Maryland board, said the payment limits should be viewed as a last resort, a tool that can be used when other cost-control measures haven’t worked.
“The goal is for folks to never be able to say that they can’t afford their insulin. And I think we may get there soon enough just because of how much is happening in that space,” he said. “So if that’s the case, then maybe boards don’t need to use the upper payment limit tool.”
At least one form of insulin was included on Colorado’s list of drugs eligible for review, but not the most commonly taken brand-name insulins. That precludes the Colorado board from addressing insulin costs more broadly.
The pharmaceutical industry has pushed back against the concept of payment limits, warning that drugmakers could pull out of states that set payment limits.
“The boards are acutely aware of this discussion point. The interest and the purpose of these boards is to increase access to the drugs, not decrease it,” York said. “But there’s kind of this game theory element of: How will manufacturers react?”
Reck discounted the notion that a payment limit would prompt a manufacturer to abandon a profitable market.
“Unfortunately, it’s kind of a scary message and it can be impactful on patients,” she said.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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A medida que bajan los niveles de agua, suben los de arsénico
Cuando los antepasados de John Mestas se mudaron a Colorado hace más de 100 años para criar ovejas en el Valle de San Luis, “llegaron al paraíso”, contó.
“Había tanta agua que pensaron que nunca se acabaría”, dijo Mestas refiriéndose a la región agrícola en la cabecera del río Grande.
Cuando los antepasados de John Mestas se mudaron a Colorado hace más de 100 años para criar ovejas en el Valle de San Luis, “llegaron al paraíso”, contó.
“Había tanta agua que pensaron que nunca se acabaría”, dijo Mestas refiriéndose a la región agrícola en la cabecera del río Grande.
Ahora, décadas de sequía impulsada por el cambio climático, combinada con la sobre explotación de los acuíferos, están dejando al valle desesperadamente seco, y parece estar intensificando los niveles de metales pesados en el agua potable.
Al igual que un tercio de las personas que viven en este desierto alpino de gran altitud, Mestas depende de un pozo privado que extrae agua de un acuífero para beber. Y, al igual que muchos agricultores de la zona, usa la misma fuente para regar la alfalfa que alimenta a sus 550 vacas.
“Aquí, el agua lo es todo”, dijo.
Mestas, de 71 años, ahora es uno de los cientos de propietarios de pozos que participan en un estudio que aborda la pregunta: ¿Cómo afecta la sequía no solo a la cantidad, sino también a la calidad del agua?
El estudio, dirigido por Kathy James, profesora asociada en la Escuela de Salud Pública de Colorado, se centra en el arsénico en los pozos privados de agua potable. El arsénico, un carcinógeno que se encuentra naturalmente en el suelo, ha estado apareciendo en niveles crecientes en el agua potable del valle, según James.
En California, México y Vietnam, las investigaciones han relacionado el aumento de los niveles de arsénico en el agua subterránea con la sequía y la sobre explotación de los acuíferos.
A medida que el oeste lucha contra una mega sequía que ha durado más de dos décadas y los estados corren el riesgo de recortes en el agua del menguante río Colorado, el Valle de San Luis ofrece pistas sobre lo que el futuro puede deparar.
A nivel nacional, alrededor de 40 millones de personas dependen de pozos domésticos, estimó Melissa Lombard, investigadora en hidráulica del U.S. Geological Survey. Nevada, Arizona y Maine tienen el mayor porcentaje de usuarios de pozos domésticos —que oscilan entre aproximadamente un cuarto y una quinta parte de estos usuarios—, que utilizan agua con niveles elevados de arsénico, según encontró en un otro estudio.
Durante la sequía, el número de personas en los Estados Unidos continental expuestas a niveles elevados de arsénico en pozos domésticos podría aumentar de aproximadamente 2,7 millones a 4,1 millones, estimó Lombard utilizando modelos estadísticos.
Se ha comprobado que el arsénico afecta la salud a lo largo de la vida, comenzando con los espermatozoides y los óvulos, explicó James. Incluso una pequeña exposición, acumulada a lo largo de la vida de una persona, es suficiente para causar problemas de salud, agregó.
En un estudio anterior en el valle, James encontró que la exposición de por vida a niveles bajos de arsénico inorgánico en el agua potable, entre 10 y 100 microgramos por litro (µg/L), estuvo relacionada con un mayor riesgo de enfermedad coronaria. Otras investigaciones han vinculado la exposición crónica a niveles bajos de arsénico con hipertensión, diabetes y cáncer.
Las mujeres embarazadas y los niños corren un mayor riesgo de sufrir daños.
La Organización Mundial de la Salud establece el límite recomendado de arsénico en el agua potable en 10 µg/L, que también es el estándar de los Estados Unidos para los suministros públicos de agua. Pero las investigaciones han demostrado que, incluso a 5 µg/L, el arsénico está relacionado con tasas más altas de lesiones en la piel.
“Creo que es un problema del que mucha gente no está consciente”, dijo Lombard. “El cambio climático probablemente afectará la calidad del agua”, dijo, pero se necesita más investigación para comprender cómo y por qué.
Un foco de esperanza
El Valle de San Luis, que ha sido sede de una gran cantidad de investigación e innovación, es el lugar ideal para explorar esas preguntas, y posibles soluciones.
Conocido por sus impresionantes vistas montañosas y la cercanía al Parque y Reserva Nacional Great Sand Dunes, el valle abarca una región aproximadamente del tamaño de Massachusetts, convirtiéndolo en el valle alpino más grande de América del Norte.
Rico en herencia indígena, mexicana y española, contiene 500,000 acres de tierra de riego que producen papas, alfalfa para forraje y cebada para la cerveza de Coors. Es hogar de casi 50,000 personas, muchas de ellas trabajadores agrícolas y aproximadamente la mitad de ellas hispanas.
También es un lugar desafiante para vivir: los condados aquí se encuentran entre los más pobres del estado, y las tasas de diabetes, enfermedad renal y depresión son altas.
Dado que llueve muy poco, aproximadamente 7 pulgadas al año en promedio, los agricultores dependen de dos grandes acuíferos y de las cabeceras del río Grande, que continúa hacia México. El deshielo de las imponentes cordilleras de Sangre de Cristo y San Juan recarga el suministro cada primavera.
Sin embargo, a medida que el clima se calienta, hay menos nieve y el agua se evapora más rápidamente de lo normal tanto del suelo como de los cultivos. “Esta comunidad entera, esta cultura, se construyó en torno a la agricultura de riego”, dijo Cleave Simpson, senador estatal de Alamosa, republicano y agricultor de cuarta generación.
Pero desde 2002, el acuífero no confinado del valle ha perdido 1 millón de acres-pie de agua, o suficiente para cubrir 1 millón de acres de tierra con un pie de agua de profundidad, debido a la sequía persistente y el uso excesivo. Ahora las comunidades del valle enfrentan una fecha límite para reponer el acuífero, o enfrentar el cierre estatal de cientos de pozos de riego.
“Estamos una década adelante de lo que está sucediendo en el resto de Colorado” debido a la intensidad de la escasez de agua, dijo Simpson, quien administra el Río Grande Water Conservation District.
“Esto ya no es una sequía, esto es realmente la desertificación del Oeste“, dijo Simpson. Así es como los científicos describen una tendencia a largo plazo hacia la sequedad y aridez persistentes que solo puede detenerse abordando el cambio climático causado por los humanos.
James, quien es epidemióloga e ingeniera, ha estado estudiando las conexiones entre el clima y la salud en el valle durante los últimos 15 años. Descubrió que durante las tormentas de polvo en el Valle de San Luis, que se han vuelto más frecuentes, más personas llegan al hospital por ataques de asma. Y ha encuestado a los trabajadores agrícolas sobre cómo la sequía está afectando su salud mental.
En el estudio de los pozos domésticos, James se está centrando en el arsénico, que según dijo ha ido aumentando gradualmente en los pozos de agua potable del valle en los últimos 50 años. Los niveles de arsénico en el agua subterránea del Valle de San Luis son “considerablemente más altos que en muchas otras áreas de los Estados Unidos”, según James. También está investigando las disparidades étnicas, ya que un estudio mostró que los adultos hispanos tenían niveles más altos de arsénico en su orina que los adultos blancos no hispanos. (Las personas hispanas pueden ser de cualquier raza o combinación de razas).
Ahora, James tiene como objetivo analizar 1,000 pozos privados en el valle para explorar las conexiones entre la sequía, la calidad del agua y la salud. Hasta ahora, dijo que una pequeña proporción de los pozos muestra niveles elevados de metales pesados, incluyendo arsénico, uranio, tungsteno y manganeso, que se encuentran naturalmente en el suelo.
A diferencia de los suministros públicos de agua, los pozos domésticos privados no están regulados y pueden pasar años sin ser analizados. James ofrece pruebas de agua gratuitas y consultas sobre los resultados a los participantes. En el condado de Conejos, la hija de John Mestas, Angie Mestas, aprovechó la oportunidad de hacer una prueba gratuita, que costaría $195 en un laboratorio local.
Angie, maestra de 35 años, dijo que utilizó los ahorros de toda una vida para perforar un pozo de agua potable en su terreno, un campo abierto de hierba chamisa con vistas panorámicas a las Colinas de San Luis. Pero no beberá de este pozo hasta que se realicen pruebas de arsénico y E. coli, que son comunes en la zona.
Mientras espera los resultados de las pruebas, ha estado llevando barriles de agua de 5 galones desde la casa de su padre cada vez que pasa el fin de semana en su nueva carpa.
Amenaza sin olor ni color
Mientras tanto, Julie Zahringer, cuya familia se estableció en el valle desde España hace casi 400 años, ha estado observando las tendencias de calidad del agua de primera mano.
Zahringer, de 47 años, creció conduciendo un tractor en el rancho de su abuelo cerca de San Luis, la ciudad más antigua de Colorado, y pasó tiempo en el laboratorio con su madre, que es científica.
Como química y directora de laboratorio de SDC Laboratory en Alamosa, Zahringer analiza el agua potable privada y pública en el valle. Estimó que el 25% de los pozos privados analizados por su laboratorio muestran niveles elevados de arsénico. “Es incoloro, es inodoro”, dijo Zahringer. “La mayoría de las familias no saben si están bebiendo arsénico”.
Para ella, el vínculo con el clima parece claro: durante los períodos de sequía, un pozo que normalmente tiene alrededor de 10 µg/L de arsénico puede fácilmente duplicar o triplicar su concentración, dijo. Una posible razón es que hay menos agua para diluir los contaminantes naturales del suelo, aunque también intervienen otros factores.
Dijo que los niveles de arsénico solían ser bastante estables, pero después de 20 años de sequía, fluctúan de manera descontrolada.
“Ahora, cada vez más rápido, veo el mismo pozo que analicé hace tres años, y ni siquiera parece el mismo” porque los niveles de contaminantes han aumentado tanto, dijo Zahringer, quien también es miembro de la Comisión de Control de Calidad del Agua de Colorado.
En su propio pozo de agua potable, el nivel de arsénico aumentó de 13 a 20 µg/L este año, dijo.
Las observaciones de Zahringer son importantes historias de primera mano. James tiene como objetivo explorar, en un estudio científico riguroso con una muestra representativa de pozos y datos geoquímicos extensos, la prevalencia del arsénico y su conexión con la sequía.
La investigación todavía se encuentra en etapas iniciales, pero los científicos tienen varias hipótesis sobre cómo la sequía podría afectar el arsénico en el agua potable. En el Valle de San Joaquín, un importante centro agrícola en California, la investigación liderada por el experto en hidráulica Ryan Smith relacionó el aumento de arsénico en las aguas subterráneas con el “hundimiento del terreno”, un fenómeno documentado por primera vez en Vietnam.
El hundimiento del terreno, cuando el suelo se hunde debido a la sobreexplotación de los acuíferos, parece liberar arsénico de la arcilla hacia el agua, dijo Smith, profesor asistente de la Universidad Estatal de Colorado. En California, la sobreexplotación estaba fuertemente correlacionada con la sequía, agregó.
Sin embargo, otros factores, como la profundidad de un pozo, también juegan un papel: otro estudio del mismo sistema de acuíferos en California encontró que mientras el arsénico aumentaba en las aguas subterráneas más profundas, disminuía en las aguas más superficiales debido, en parte, a la oxidación.
Smith está trabajando ahora con James en el estudio del Valle de San Luis, donde espera que una gran cantidad de datos geoquímicos brinden más respuestas. Mientras tanto, los líderes comunitarios en el valle se están adaptando de formas impresionantes e innovadoras, dijo James.
Zahringer dijo que si el arsénico aparece en un pozo privado, anima a los clientes a instalar un sistema de filtración de agua por ósmosis inversa en el fregadero de la cocina. El equipo cuesta alrededor de $300 con un proveedor externo, aunque los filtros que cuestan menos de $50 pueden necesitar cambiarse cada seis a 18 meses, dijo.
Aquellas personas que tratan su agua para eliminar el arsénico deben seguir realizando pruebas cada seis meses para asegurarse de que los filtros sean efectivos, agregó Zahringer. SDC Laboratory ofrece una prueba de arsénico por $25.
“A las personas no les gusta analizar el agua porque sabe bien y sus abuelos la bebían”, dijo. Pero “la solución es tan fácil”.
Una campaña de calidad del agua en 2009, liderada por el Consejo del Ecosistema del Valle de San Luis, también encontró niveles elevados de arsénico en los pozos a lo largo del valle. Como parte de sus actividades, la organización sin fines de lucro trabajó con agentes inmobiliarios para asegurarse de que los pozos domésticos sean analizados antes de que alguien compra una casa.
Eso es lo que hizo Sally Wier cuando compró una casa hace cinco años en una parcela de 8 acres en el condado de Rio Grande, rodeada de campos de cebada y alfalfa. La primera vez que probó su pozo, el nivel de arsénico era de 47 µg/L, casi cinco veces más del límite establecido por la Agencia de Protección Ambiental (EPA). Wier instaló un sistema de filtración de agua por ósmosis inversa, pero dijo que el nivel de arsénico aumenta antes de que cambie los filtros cada pocos meses.
“Me pone muy ansiosa”, dijo Wier, de 38 años. “Probablemente estoy ingiriendo arsénico. Eso no es bueno para la salud a largo plazo”.
Wier es una de muchas personas que trabajan en soluciones innovadoras para la escasez de agua. Como gerente de proyectos de conservación en Colorado Open Lands, trabajó en un acuerdo mediante el cual se le pagó a un agricultor local, Ron Bowman, para que dejara de regar su granja de 1,800 acres. Según Wier, este acuerdo marca la primera vez en el país que se utiliza un acuerdo de uso de conservación para salvar agua subterránea y reponer acuíferos.
Canalizando dinero hacia una solución
En el condado de Costilla, el Move Mountains Youth Project ha estado pagando a agricultores locales, a través de una subvención gubernamental, para que conviertan una parte de sus tierras en cultivos de vegetales en lugar de cultivos de alfalfa que requieren mucha agua.
Los agricultores luego entrenan a los jóvenes para cultivar brócoli, espinaca y frijoles bolita, que se venden en una tienda de comestibles local. El proyecto tiene como objetivo fomentar la próxima generación de agricultores y “combatir la diabetes” al proporcionar alimentos cultivados localmente, dijo la directora ejecutiva Shirley Romero Otero.
Su grupo trabajó con tres agricultores el verano pasado y planea hacerlo con siete esta temporada, si hay suficiente agua disponible, contó.
En otro esfuerzo, agricultores como los Mestas se están gravando a sí mismos para extraer agua de sus propios pozos de riego. Y Simpson, del Distrito de Conservación del Agua del Río Grande, recientemente aseguró $30 millones en fondos federales para apoyar la conservación del agua. El plan incluye pagar a los agricultores $3,000 por acre-pie de agua para retirar permanentemente sus pozos de riego.
Dado que el arsénico no se limita a los pozos privados, también han respondido las agencias públicas: la ciudad de Alamosa construyó una nueva planta de tratamiento de agua en 2008 para cumplir con los estándares federales de arsénico.
En 2020, el estado de Colorado demandó a una granja de hongos en Alamosa por exponer a sus trabajadores al arsénico presente en el agua de grifo.
En la comunidad de casas móviles High Valley Park en el condado de Alamosa, un pozo que abastece a 85 personas ha excedido los niveles legales de arsénico desde 2006, cuando EPA endureció su estándar de 50 a 10 µg/L. En la prueba más reciente en febrero, la concentración fue de 19 µg/L.
En una tarde de abril, cuatro niños saltaban en un trampolín y se perseguían unos a otros alrededor de un árbol. “Tío, tengo sed y no quedan botellas de agua”, dijo uno de los niños, sin aliento.
El pozo abastece a 28 hogares. Sin embargo, los inquilinos de cinco viviendas han afirmado que no han estado bebiendo el agua durante años, no por el arsénico, del cual algunos no estaban conscientes, sino porque el agua a menudo sale de color marrón.
Eduardo Rodríguez, de 29 años, quien trabaja en excavación, dijo que compra dos cajas de botellas de agua cada semana para su esposa y sus cinco hijos.
“Esto debe arreglarse”, afirmó.
“El agua es terrible”, coincidió Craig Nelson, de 51 años, quien ha vivido en el parque de casas móviles durante dos años. “No se puede tomar”. Debido a que el pozo abastece al menos a 25 personas, está regulado por el estado.
El propietario del terreno, Rob Treat, de Salida, compró la propiedad en febrero de 2022 por casi medio millón de dólares. Cumplir con los estándares federales en cuanto al contenido de arsénico ha sido difícil, afirmó, porque sus niveles fluctúan cuando los agricultores cercanos extraen agua del acuífero para regar sus cultivos.
Treat estaba utilizando cloro para convertir un tipo de arsénico en una forma más tratable. Sin embargo, si agregaba demasiado cloro, esto creaba subproductos tóxicos, lo cual también llamó la atención de los reguladores. Bajo presión del estado, comenzó a mejorar el sistema de tratamiento de agua en mayo, con un costo de $150,000. Para cubrir los gastos, planea aumentar el alquiler mensual de $250 a $300 por lote.
“Si el estado se mantuviera al margen”, se quejó, “podríamos proporcionar viviendas asequibles”.
Mientras tanto, John Mestas aún está esperando los resultados de su pozo de agua potable.
Cuando regresa de viajar para administrar su rebaño de ganado, “lo primero que hago cuando entro a la casa es beber dos vasos de agua”, dijo. “Eso es lo que extraño, mi agua y mis perros. Saltan sobre mí mientras tomo mi agua. No sé quién está más feliz, si yo bebiendo el agua o ellos saltando”.
Este artículo fue apoyado por The Water Desk, una iniciativa de periodismo independiente con sede en el Center for Environmental Journalism de la Universidad de Colorado-Boulder.
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 Abortion Pill Goes Back to Court
The Host
Julie Rovner
KFF Health News
Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
The fate of the abortion pill mifepristone remains in jeopardy, as an appellate court panel during a hearing this week sounded sympathetic to a lower court’s ruling that the FDA should not have approved the drug more than two decades ago. No matter how the appeals court rules, the case seems headed for the Supreme Court.
Meanwhile, in the partisan standoff over raising the nation’s debt ceiling, a key sticking point has emerged: whether to add a work requirement to the state-federal Medicaid program. Republicans are adamant about adding one; Democrats point out that, in the few states that have tried them, red tape has resulted in eligible people wrongly losing their health coverage.
This week’s panelists are Julie Rovner of KFF Health News, Sandhya Raman of CQ Roll Call, Rachel Roubein of The Washington Post, and Victoria Knight of Axios.
Panelists
Sandhya Raman
CQ Roll Call
Rachel Roubein
The Washington Post
Victoria Knight
Axios
Among the takeaways from this week’s episode:
- Hopes among abortion rights advocates for continued access to mifepristone dimmed as the three judges on the 5th Circuit Court of Appeals signaled they are skeptical of the FDA’s decades-old approval of the drug and of the Biden administration’s arguments defending it. Lawyers debated whether the Texas doctors challenging the drug had been harmed by it and thus had standing to sue. If the original ruling effectively revoking the drug’s approval is allowed to stand, the case could open the door to future legal challenges to the approval of controversial drugs.
- Two more states in the South are moving to restrict abortion, further cutting access to the procedure in the region. In North Carolina, a new Republican supermajority in the state legislature enabled the passage this week of a new, 12-week ban, as lawmakers in South Carolina consider a six-week ban.
- In Congress, the top Senate Republican said he will not back one senator’s months-long effort to hold up Pentagon nominations over a policy that supports troops and their dependents who must travel to other states to obtain an abortion.
- Envision Healthcare — which spent big in 2019 to fight legislation prohibiting some surprise medical bills — has filed for bankruptcy protection more than a year after the law took effect and cut into its bottom line. But a federal lawsuit from a group of emergency room physicians against Envision may move forward. The lawsuit claims the private equity-backed company is in violation of a California law banning corporate control of medical practices, and it could carry major consequences for the growing number of practices backed by private equity firms across the country.
- Monica Bertagnolli has been nominated to lead the National Institutes of Health. Currently the director of the National Cancer Institute, she will need to be confirmed by the Senate, which hasn’t confirmed an NIH chief since before the passage of the Affordable Care Act in 2010. Meanwhile, Sen. Bernie Sanders’ stewardship of a key health committee is causing delays on even bipartisan efforts.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: The Washington Post’s “A 150-Year-Old Law Could Help Determine the Fate of U.S. Abortion Access,” by Dan Diamond and Ann E. Marimow.
Victoria Knight: The New York Times’ “World Health Organization Warns Against Using Artificial Sweeteners,” by April Rubin.
Rachel Roubein: CBS News’ “Thousands Face Medicaid Whiplash in South Dakota and North Carolina,” by Arielle Zionts of KFF Health News.
Sandhya Raman: CQ Roll Call’s “A Year After Dobbs Leak, Democrats Still See Abortion Driving 2024 Voters,” by Mary Ellen McIntire and Daniela Altimari.
Also mentioned in this week’s episode:
KFF Health News’ “ER Doctors Vow to Pursue Case Against Envision Despite Bankruptcy,” by Bernard J. Wolfson.
click to open the transcript
Transcript: The Abortion Pill Goes Back to Court
KFF Health News’ ‘What the Health?’
Episode Title: The Abortion Pill Goes Back to Court
Episode Number: 298
Published: May 18, 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, May 18, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Rachel Roubein of The Washington Post.
Rachel Roubein: Hi. Thanks for having me.
Rovner: Victoria Knight of Axios.
Victoria Knight: Hi. Good morning.
Rovner: And Sandhya Raman of CQ Roll Call.
Sandhya Raman: Hi, and good morning, everyone.
Rovner: Lots and lots of health news this week, so we will dive right in. We’re going to start with abortion because there is so much breaking news on that front. On Wednesday, a three-judge panel of the 5th Circuit Court of Appeals in New Orleans held a hearing on the Biden administration’s appeal of a Texas ruling that the FDA was wrong when it approved the abortion pill mifepristone more than 22 years ago. The panel, which was randomly chosen from an already pretty conservative slate there in the 5th Circuit, appeared to be even more anti-abortion than most of the judges on that bench. So, Sandhya, you listened to this whole thing. What, if anything, did we glean from this hearing?
Raman: I think we gleaned a lot of things and a lot of things I think we have predicted from the start. I think going into this, looking at the various judges’ records, they have ruled on anti-abortion cases in the past in the favor of that. You take that in with a grain of salt. And from watching the arguments, it seemed like they were fairly skeptical of the challenge and FDA’s approval of mifepristone and the subsequent regulations. You could kind of see through the questioning the kinds of things that they were asking and just pretty skeptical of just a lot of the things that were being said by DOJ [the Department of Justice] and by Danco there yesterday. So —
Rovner: Yeah, we should say that the lawyer for the FDA had one sort of round of presentation and questions. And then the lawyer from Danco, the company that makes mifepristone, had another. And they were pretty tough on both of them.
Raman: Yeah, and I thought it was interesting because when we were listening to the arguments, the DOJ lawyer and the Danco lawyer were kind of arguing a lot of the time just that there shouldn’t be standing, that there isn’t necessarily proof in any of the filings that any of the doctors that that were suing have really had harm due to the FDA’s role. It was kind of down the road. I think one thing that Harrington, the judge for the DOJ, had said, that was the FDA approving a drug does not mean that anyone has to prescribe it, it does not mean anyone has to take it, that the fact that if you were treating someone after the fact, that’s a few steps down the line. And so that was kind of like a messaging thing that they were doing kind of over and over again. And then when we got to the Alliance Defending Freedom, which is representing the conservative doctors, Erin Hawley had said, you know, they are affected both physically and she said emotionally, which was interesting, kind of looking at that. And so it’ll depend on how the judges rule. I think that there were definitely some signs throughout the arguments about this not being as unprecedented and that the FDA is not untouchable in terms of the courts weighing in on regulation.
Rovner: If you were just listening to it, you didn’t sort of know all of this. And remember, these were two Trump-appointed judges and a George W. Bush-appointed judge who has a history of ruling in favor of anti-abortion efforts. But they were saying that, “Well, people sue the FDA all the time. You know, what’s the difference here?” Well, the difference here is nobody has ever sued the FDA saying that they were wrong to approve something 20 years ago. Nobody’s ever tried to get a drug taken off the market that way. There’s obviously lots of litigation against the FDA for the way it does some of its thing. I mean, it’s often little things and then people sue each other with the FDA caught in the middle — drugmakers and lots of patent suits. I was surprised that the appeals court judges took issue with what everybody I think acknowledges is a correct claim that this is unprecedented and this could open the door to other challenges to other drugs for any reason — you know, someone doesn’t like them. I mean, these doctors are not saying that they’ve prescribed this drug and women have taken it and had bad reactions. They’re saying that possibly, if someone takes it and has a bad reaction, that they would have to treat that person and that that would harm their conscience, even though, as the lawyers made it clear, no one has ever forced these doctors to take care of anyone against their conscience because there are already laws that protect against that. So it was very roundabout in a lot of ways.
Raman: I think one thing that they had mentioned was that, you know, some of the cases cited in the filings were, you know, someone had taken an imported version of a mifepristone, not the one that Danco made, and then someone else had been recommended not to take the drug but still took the drug and then had side effects related to that. But there is another thing that kind of stuck out to me, was when Judge [James] Ho had asked would the FDA adhere to whatever the final court decision was? And that was a little striking to me. And then the FDA had said, you know, we will. And they cited that they had signed an affidavit last year saying that they’re going to agree to whatever the final decision is. But there were a lot of parts of the case that were just very unusual compared to the other cases that I have watched on this or any other part of health care, I think.
Rovner: Although in fairness to the judges, I mean, there was — a lot of legal experts were saying that the FDA does have enforcement authority to determine what it’s going to enforce and what it isn’t. And Justice [Samuel] Alito, when he actually challenged the Supreme Court’s stay of the original ruling — Justice Alito questioned about whether FDA would even follow if this drug was deemed unapproved. So that’s at least been coming up as a discussion. Let’s move on because it could be weeks or even months before we hear back from this panel, and we will obviously keep watching it. There’s been plenty of action in the states, too, this week — not that surprising because it’s May and lots of state legislatures are wrapping up their sessions for the year. But we should point out that particularly North and South Carolina are acting on abortion because they’ve been two of the last states in the South where abortion had remained both legal and pretty much broadly available. That’s changing as of this week, though, isn’t it?
Roubein: That’s changing in North Carolina, for sure, after this week. The Republicans there have supermajorities as of April; a Democrat in the House switched to the Republican Party. And what they did there is they overrode a veto from Democratic Gov. Roy Cooper. And this new bill, which the main provisions go into effect July 1, will restrict abortions at 12 weeks in pregnancy. And now in South Carolina, it’s still a little bit to be determined. The House passed a bill last night which would restrict abortions after fetal cardiac activity’s detected — roughly six weeks. Now they’re sending that bill back to the Senate, which had already passed it. But they made some changes. And it’s not clear whether some of the Republican female senators who oppose a near-total ban will be in favor of these changes. So that one’s a bit up in the air.
Rovner: And obviously, the 12 weeks in North Carolina is going to be important because there are a lot of women coming from other states now to North Carolina and clinics are getting backed up. It is a time thing for women to sort of be able to get themselves together, often get child care, get time off from a job, have to find a hotel in most cases, and go to another state. So it’s going to turn out to be an issue.
Roubein: I think one of the provisions abortion rights groups are pointing to there is, because this is a 12-week ban, so roughly 90% of abortions are allowed to continue, but what Democrats really pointed out was that the bill requires an in-person visit 72 hours before obtaining an abortion. So that could kind of restrict people, as you mentioned, Julie, from being able to take that time and come in from out of state in North Carolina, which has become a destination for abortions.
Rovner: All right. Well, I want to circle back to something that’s been going on for a while in the U.S. Senate. We talked about it back in March. Alabama Republican Sen. Tommy Tuberville is single-handedly holding up many military promotions to protest a Biden administration policy that allows members of the military in states with abortion bans both time off and travel funds to obtain an abortion in another state. Defense Secretary Lloyd Austin says that this — the delayed promotions — is starting to impact the nation’s readiness. Is there any resolution to this in sight? It’s now been going on for, what, a month and a half.
Raman: I think that, you know, we’re getting somewhat closer to it, but it’s hard to tell. I mean, we’ve had Mitch McConnell say that he’s not supporting what Tuberville is doing with the blockade of military nominations, so that could be a little bit more pressure compared to anyone else in the caucus putting that pressure. But I think the other thing that had come up is that there had been a report this week that the administration was going to delay on deciding if Space Force Command was going to move from Colorado to Alabama because of Tuberville. And so I think that, if that is the case — two different pressure points — there might be movement. But it’s been happening for a long time. We’ve had hundreds of nominees delayed. And I think the pushback has not necessarily been fully partisan. Even before we had McConnell speak out, we’ve had other members of — Republican senators kind of say, you know, this is maybe not the best move to do this, so —
Rovner: I mean, given how important Republicans take the military, I get why he’s doing this. It’s a pressure point because it’s a DOD [Department of Defense] policy. But still, it looks funny for a Republican to be holding up something that’s really important to the military.
Raman: Earlier this year, I think it was last month, you know, the Senate had done their procedural vote on a Tuberville resolution on something that was kind of similar, when they had the VA [Department of Veterans Affairs] rule that allows them to provide abortions for, you know, the Hyde exceptions, so rape, incest, life of the mother. And, you know, that didn’t pass on a procedural vote. So maybe something like that could be, like, a bargaining point. But it would require Democrats to say, “Yes, we do want to vote on this.” And I think that the last comments that Tuberville had even said were that, you know, “Until this policy is gone, I don’t want to waiver.” So it might not be a solution, but it could be something.
Rovner: Well, speaking of things that are proving difficult to resolve, let’s talk about the debt ceiling talks. As of today, Thursday, there’s no agreement yet, although President Biden is going to cut his overseas trip short after Treasury Secretary Janet Yellen warned that the so-called x-date, when the Treasury can no longer pay its bills, could really happen as soon as June 1. One of the big sticking points appears to be work requirements for programs aimed at low-income Americans, which Republicans are demanding and Democrats are resisting. Welfare, now called Temporary Aid to Needy Families, already has work requirements, as does SNAP [Supplemental Nutrition Assistance Program], the current name for food stamps, which leaves Medicaid, which has been a particular sticking point over the last few years. I guess we were all right back in February when Biden and the Republicans seemed to take Medicare and Social Security off the table, and we all predicted the fight would come down to Medicaid. So here we are, yes?
Knight: Yep, we’re at Medicaid. But it does seem like we’re really going back and forth on it. I think the sentiment at first was kind of that this would be the first thing to fall out of a potential deal between Democrats and Republicans because Democrats are really opposed to this. But I don’t know. This week, President Biden made some comments that were a little confusing. It kind of made it sound like he was potentially open to the idea. And then the White House kind of walked that back this week and sent some press releases out that were like, We don’t want to touch Medicaid. And then I believe it was sometime yesterday, on Wednesday, the president said, “Maybe, but nothing of consequence,” when talking about work requirements. And Congress is leaving today. So I think it’s kind of still up in the air, but the door still seems to be open, I guess is kind of the takeaway.
Rovner: There seems to be some concern from Democrats on Capitol Hill that President Biden may give too much away in trying to avoid a debt default. I mean, he’s already sort of after, you know, “We will not negotiate on the debt ceiling, we will not negotiate on the debt ceiling” — I mean, the administration says they’re negotiating on the budget, but they’re negotiating on the debt ceiling, right?
Knight: Yeah. I mean, and it seems that President Biden, the administration, may be open to budget caps as well or cutting spending. And that was kind of something that it seemed like Democrats at first were not open to doing at all. I talked to some appropriators this week, and they’re pretty upset about — Democratic appropriators — they’re pretty upset because they want the debt ceiling and appropriations to be a separate process, and they’re being tied together right now. Yeah, I think they’re somewhat concerned with how the president is negotiating right now.
Rovner: Well, it’s May 18. There’s been no talk yet of a temporary — although I assume at some point we’re going to say, let’s just extend this out a few days, and let’s extend it out a few more days, and we’ll extend it out a few more days. So obviously, we will watch this space. So the mifepristone case is not the only judicial news this week. In that other case out of Texas, challenging the preventive health services part to the Affordable Care Act, the 5th Circuit Court of Appeals — lots of news out of New Orleans this week — temporarily stayed the ruling by Judge Reed O’Connor that the ACA unconstitutionally deputized the U.S. Preventive Health Services Task Force from deciding which preventive services should be provided without copays. Long sentence. I hope it makes sense. Reed O’Connor, of course, being the judge who tried unsuccessfully to declare the entire ACA unconstitutional in 2018. What happens now in this case? Nothing changes until it gets resolved, right?
Roubein: Right. Right now I think that just through that, this means that insurers will be required to continue covering services recommended by the U.S. Preventive Services Task Force without cost sharing in care.
Rovner: And that includes PrEP for HIV, which is what’s really at issue with these doctors who are suing the FDA — or actually I guess they’re suing HHS [the Department of Health and Human Services] in general — saying that they don’t want to be required to provide these drugs.
Roubein: Yeah, it does include PrEP.
Rovner: So that will continue. I imagine that will also find its way to the Supreme Court. Finally, in not really judicial but court-related news, Envision, the private equity-backed physician staffing firm, filed for Chapter 11 bankruptcy this week, presumably because the emergency room physician practices it owns can no longer send patients most surprise medical bills. ER bills were among the most common types of surprise bills, when patients would specifically take their emergency to an in-network hospital, only to find that the doctors in the emergency room were all out of network. Is this one small step towards taking some of the profit motive out of health care? I don’t see anybody, like, shedding a lot of tears for Envision declaring bankruptcy here.
Raman: I think the second part, that the lawsuit by the ER doctors against Envision, despite them filing for bankruptcy, is going forward is interesting, and it seems unusual to me, because they’re not asking for monetary damages, but they want, like, a legal finding that the way that the company’s business structure — ownership of the staffing groups — is illegal, and if, like, winning that would ban the practice in the state of California. And so I think if you’re looking at it in terms of, like, things that would happen over the course of time, policywise, that could be something interesting to kind of watch there.
Roubein: I just wanted to hearken back real quick to, like, 2019. In the middle of the surprise billing debate, Envision and another major doctor staffing firm spent significant sums of money to try and sway the surprise billing legislation that the House and the Senate were hashing out.
Rovner: Yeah, they made CNN and MSNBC very rich with their ads.
Roubein: Millions of them.
Rovner: In the ’90s, I covered, you know, this whole corporate practice of medicine thing because I think it’s every state has a law that says that corporations can’t practice medicine; only licensed health professionals can practice medicine. So I’ve always wondered about, you know, what this lawsuit is about anyway. How are these companies actually getting away with doing this? And the answer is maybe they’re not or maybe they won’t. It’s going to be interesting. There’s now so much profit motive and private equity in health care because there’s a lot of money to be made that it’s, I think somebody is actually starting to, you know, call on it. We will definitely see how this plays out. We may not have a “This Week in Private Equity” anymore. Well, let us go back to Capitol Hill, where we finally have a nominee to head the National Institutes of Health, current National Cancer Institute chief Monica Bertagnolli, who is also, ironically, a cancer patient at the moment, although her prognosis is very good, we are told. There hasn’t been a confirmed head of the NIH since Francis Collins stepped down at the end of 2021. Congress hasn’t had to confirm a new head of the NIH since before the passage of the Affordable Care Act. I imagine that Dr. Bertagnolli is going to have to navigate some pretty choppy confirmation waters, even in a Senate where Democrats are nominally in the majority, right?
Knight: Yeah, I spent some time talking to HELP [Health, Education, Labor and Pensions] Committee Republicans last week and this week, and they definitely have some things they want to see out of a new NIH director. They’re definitely concerned about gain-of-function research, potential funding of that type of research, which is supposed to, hypothetically, make viruses more virulent. So several of them said, you know, “We don’t want to see the agency funding that kind of research,” or, “We want restrictions around that kind of research.” They also are concerned with the agency giving a grant to an organization called EcoHealth, which was supposed to have done research in Wuhan that was around gain-of-function-type things. And I think they also, in general, are just concerned with how the NIH and the CDC [Centers for Disease Control and Prevention] responded to the covid pandemic, and they aren’t happy with some of the decisions they made, what they felt like were mandate — top-down mandates. And so I do think we will see, if we actually get a HELP confirmation hearing any time soon, we’ll see — I think it’s going to be pretty contentious possibly. And as you referenced, I kind of looked into this when I was writing my story, and there really has not been a contentious hearing in a long time. Francis Collins went through a unanimous voice vote when he was confirmed. And then the two previous NIH directors, they kind of sailed through their HELP confirmation hearings. And if you think about it, Francis Collins also has served under both Republican and Democratic presidents. And I wonder if we are coming to a point where that won’t happen anymore with NIH directors.
Rovner: Back when I first started covering the NIH, it was contentious because they were talking about fetal tissue research and stem cell research and stuff that was really controversial. But then Newt Gingrich, when he became speaker of the House, declared that, you know, he wanted the 21st century to be, you know, the century of biomedicine. And he vowed to double the funding for the NIH, which the Republicans did, you know, with the Democrats’ help. So NIH has been this sacred cow, if you will, bipartisanly for at least two decades. And now it’s sort of coming back to being a little bit controversial again. In talking about the debt ceiling and possible budget cuts, I mean, NIH has usually been spared from those. But I’m guessing that if there’s budget caps, NIH is going to be included in those places where we’re going to cut the budget, right?
Knight: Yeah, absolutely. I have been talking to a Republican House appropriator over the NIH. Robert Aderholt told me that, yes, they expect a cut in their budget because Defense and NIH, Labor, HHS are usually the biggest bills. And he told me Defense probably isn’t getting cut very much, so we’re expecting to get cut. So obviously, you know, it’s a messaging bill in the House, but I think the expectation is that they’re going to propose that. The Senate seemed pretty set on keeping NIH funding what it was. They had an NIH appropriations hearing recently. So, I mean, there’s going to be some difference between those two chambers. But I think it does seem likely, especially with all the debt ceiling stuff, that cuts are possible.
Rovner: So that’s NIH. In the meantime, now we have an opening at the CDC because Rochelle Walensky announced her resignation. Have we heard any inklings about who wants to step into that very hot seat?
Roubein: I can point to some reporting from my colleagues at the Post, Dan Diamond and Lena H. Sun. At the time, the day that Walensky announced that she’d be stepping down June 30, they had wrote that White House officials had, you know, been preparing for a little while for a potential departure and had begun gauging interest in the position. And some people that Dan and Lena named that the administration had approached is former New York City Health Commissioner Dave A. Chokshi, former North Carolina Health Secretary Mandy Cohen, and the California health state secretary. Now, we don’t know ultimately what the White House, President Biden, is going to do. I do think it’s worth pointing out that the new CDC director won’t have to be Senate-confirmed; that was passed in the big sweeping government funding bill, that a CDC director would need to be confirmed, but starting January 20, 2025. So, you know, sounds like something, you know, Democrats might have been interested in doing, kind of pushing that out. So, yeah.
Rovner: The CDC is, you know, sort of the one big Department of Health and Human Services job that does not come up for Senate confirmation. Obviously, that is being changed, but it’s not being changed yet. Well, both of these confirmations, mostly the NIH one at this point, comes up before the Senate HELP Committee, Victoria, as you pointed out. Chairman Bernie Sanders there is having — what shall we call them? — some growing pains as chairman of a committee with a heavy legislative workload. What’s the latest here? He’s still kind of working on getting some of these bipartisan bills through, isn’t he?
Knight: Yeah, there is a little bit of a snafu at a recent HELP Committee hearing where Ranking Member Bill Cassidy was not happy that Sen. Sanders was bringing up some amendments that he wasn’t aware of or that they had kind of agreed to table at some point and then he brought them back up during a hearing or during a markup, and so they ended up having to delay the markup itself and do it the next week. And these were bipartisan bills. So it was really just a process issue; it wasn’t so much the subject of the bills. And they kind of worked it out and were able to pass the bills out of the committee, or most of the bills out of the committee, the next week after that happened. So I think that Sen. Sanders is figuring out how to run the HELP Committee. What I’ve kind of heard is that he is somewhat more interested in labor issues than health, and so his focus is not maybe as much on health. And I think you can see that sometimes. Also, when you talk to Sen. Sanders, he’s very much a big-picture guy and isn’t so much in the process weeds often, whereas Sen. Cassidy loves the process.
Rovner: So we’re noticing.
Knight: Yeah, Sen. Cassidy loves the process. So they’re an interesting duo, I think.
Rovner: Yeah, I mean, I was interested that this week, you know, Sen. Sanders was among those there reintroducing the “Medicare for All” bill that obviously has no future in the immediate future. But at the same time, community health centers are up for reauthorization this year. And that has always been a pet issue, even when he was House member, you know, Rep. Sanders. This is one of the issues that I know he cares a lot about. And now he’s in charge of making sure that it gets reauthorized. So he’s got sort of these competing big-picture stuff and, not smaller, but smaller than the big-picture stuff that he really cares about. I’ll be curious to see what he’s able to do on that front. I assume there’s no word on that yet, even though the authorization ends Sept. 30, right?
Raman: The sense that I’ve gotten from talking to folks is that community health centers is higher up the totem pole than some of the other issues on the must-pass list. I mean, we still have to deal with the debt ceiling and everything related there. But I think that there has been a little bit more progress then. I mean, this week, at least in the House, Energy and Commerce had marked up their bill that had community health center funding in there. So I think there’s a little bit more push on that end because they’re, you know, fairly bipartisan, have seen interest across the board on that. So I think that they are making some progress there. It’s just that there’s so many other factors right now, and that makes it pretty tricky.
Rovner: The ironic thing about Congress — it’s summertime when everybody else sort of kicks back. — that’s when Congress kicks into gear. So a lot, I imagine, is going to happen in June and July. All right. That is this week’s news. Now it is time for our extra credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Victoria, why don’t you go first this week?
Knight: Sure. My extra credit this week is called “World Health Organization Warns Against Using Artificial Sweeteners.” It was published in The New York Times. Basically, the WHO said this week that artificial sweeteners aren’t effective in reducing body fat and could actually increase the risk of Type 2 diabetes and cardiovascular diseases. They looked at the available evidence, and it’s just a set of guidelines that they’re issuing. It’s not binding to anything. You know, every country can kind of make their own decision based on this. But I think it was an interesting marker. If you look at the influx of all these artificial sweeteners over time that have kind of become a mainstream part of our diet, they’re available in a bunch of different things that you can get at the store, and people often turn to them when they’re trying to reduce sugar. And now this large body is saying they may actually worsen your health, not help you, and not even reduce fat. So I think that was just kind of interesting. The FDA did not respond to The New York Times’ request for the story, so I’m not sure their stance on this, but just something to note.
Rovner: I was interested that the WHO did that. It seemed sort of very not WHO-ish, but also interesting. Sandhya, why don’t you go next.
Raman: All right, so my extra credit this week is called “A Year After Dobbs Leak, Democrats Still See Abortion Driving 2024 Voters.” And it’s from my colleagues “What the Health?” alum Mary Ellen McIntire and Daniela Altimari. And they take a look at how Democrats are kind of seeing how abortion messaging isn’t fading a year after — almost — the Dobbs decision, are kind of doubling down on focusing on that. President Biden and Vice President Harris were both at the EMILYs List gala this week honoring Nancy Pelosi. And it also comes amid a lot of the state action we talked about earlier of a lot of abortion bans going into place. And so they have a good look at that that you can read.
Rovner: Rachel.
Roubein: My extra credit is called “Thousands Face Medicaid Whiplash in South Dakota and North Carolina,” by Arielle Zionts from KFF Health News. And she takes a look at the unwinding of keeping people on the Medicaid program, particularly in South Dakota and North Carolina, where the dynamic is really interesting, because both states have recently passed Medicaid expansion. So officials are kind of going through the Medicaid rolls beforehand. So some people who could be eligible soon may be getting kicked off, only to need to reapply, or officials need to tell them that they can reapply. So I thought it was a really interesting look on how this is playing out.
Rovner: Yeah, it is. I mean, talk about head-explodingly confusing for people; it’s like, “You’re not eligible now, but you will be in three weeks. So just kind of sit tight and don’t go to the doctor for the next couple of weeks,” basically where they are. Well, my story is from The Washington Post, and it’s called “A 150-Year-Old Law Could Help Determine the Fate of U.S. Abortion Access,” by Dan Diamond and Ann Marimow. And it’s about the Comstock Act, which we have talked about before. It’s a Reconstruction-era law pushed through Congress by an anti-vice crusader, Anthony Comstock, who I learned this week was not actually a member of Congress. He was just an interested party. The law purports to ban the mailing of all sorts of lewd and lascivious items, including those intended to be used for abortion. Abortion opponents are trying to resurrect the law, which has never been formally repealed. But it turns out that Comstock wasn’t actually all that anti-abortion. In a newly resurrected interview that Comstock did with Harper’s Weekly in 1915, he said he never intended for the law to interfere with the practice of medicine by licensed doctors, including for abortion. Quote, “A reputable doctor may tell his patient, in his office what is necessary, and a druggist may sell on a doctor’s written prescription drugs which he would not be allowed to sell otherwise.” That’s how Comstock is quoted as saying. Um, wow. It’s just another weird twist in an already very twisty story. But let’s keep track of the Comstock Law going forward. All right. That is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us too. Special thanks, as always, to our ever-patient producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m still there. I’m at @jrovner. Sandhya?
Raman: @SandhyaWrites.
Rovner: Rachel.
Roubein: @rachel_roubein.
Rovner: Victoria.
Knight: @victoriaregisk.
Rovner: We will be back in your feed next week. Until then, be healthy.
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Courts, Health Industry, Medicaid, Medicare, Multimedia, Public Health, States, Abortion, Biden Administration, KFF Health News' 'What The Health?', North Carolina, Podcasts, South Carolina, U.S. Congress, Women's Health
New Mexico Program to Reduce Maternity Care Deserts in Rural Areas Fights for Survival
CLAYTON, N.M. — Thirteen weeks into her pregnancy, 29-year-old Cloie Davila was so “pukey” and nauseated that she began lovingly calling her baby “spicy.”
Davila was sick enough that staffers at the local hospital gave her 2 liters of IV fluids and prescribed a daily regimen of vitamins and medication. This will be Davila’s third child and she hopes the nausea means it’s another girl.
Davila had moved back to her hometown of Clayton, New Mexico, so her kids could grow up near family — her dad, aunts, uncles, and cousins all live in this remote community of about 2,800 people in the northeastern corner of the state. But Clayton’s hospital stopped delivering babies more than a decade ago.
Aside from being sick, Davila was worried about making the more than 3½-hour round trip to the closest labor and delivery doctors in the state.
“With gas and kids and just work — having to miss all the time,” Davila said. “It was going to be difficult financially, kind of.”
Then, Davila spotted a billboard advertising the use of telehealth at her local hospital.
In rural regions, having a baby can be particularly fraught. Small-town hospitals face declining local populations and poor reimbursement. Those that don’t shutter often halt obstetric services to save money — even as the number of U.S. mothers who die each year while pregnant or shortly after has hit historic highs, particularly for Black women.
More than half of rural counties lack obstetric care, according to a U.S. Government Accountability Office report released last year. Low Medicaid reimbursement rates and a lack of health workers are some of the biggest challenges, the agency reported. New Mexico Medicaid leaders say 17 of the state’s 33 counties have limited or no obstetric care.
Those realities prompted the Federal Office of Rural Health Policy, which is part of the Health Resources and Services Administration, to launch the Rural Maternity and Obstetrics Management Strategies Program, RMOMS. Ten regional efforts nationwide — including one that serves Davila in northeastern New Mexico — have been awarded federal grants to spend on telehealth and creating networks of hospitals and clinics.
“We’ve never done this sort of work before,” said Tom Morris, associate administrator for the office at HRSA. “We were really testing out a concept … could we improve access?”
After joining the telehealth program, Davila didn’t have to take the afternoon off work for a recent prenatal checkup. She drove less than a mile from her job at the county courthouse and parked near the hospital. As she stepped inside a ranch-style yellow-brick clinic building, staffers greeted Davila with hugs and laughter. She then sat on a white-papered exam table facing a large computer screen.
“Hello, everybody,” said Timothy Brininger, a family practice doctor who specializes in obstetrics. He peered out the other side of the screen from about 80 miles away at Miners Colfax Medical Center in Raton, New Mexico.
The visit was a relief — close enough for a lunchtime appointment — and with staff “I’ve known my whole life,” Davila said. She heard her baby’s heartbeat, had her blood drawn, and laughed about how she debated the due date with her husband in bed one night.
“They’re nice,” Davila said of the local staff. “They make me feel comfortable.”
Yet, Davila may be one of the last expectant mothers to benefit from the telehealth program. It is slated to run out of money at the end of August.
‘Oh My God, It Really Made a Difference’
The day after Davila’s prenatal checkup, Brininger sat at his desk in Raton and explained, “The closest OB doctor besides the one sitting in front of you who’s working today is over 100 miles in any direction.”
When the telehealth program runs out of money, Brininger said, he wants to keep devices the grant paid for that enable some patients to home-monitor with blood pressure cuffs, oxygen sensors, and fetal heart rate monitors “so they don’t have to drive to see us.”
The retired military doctor has thoughts about the pilot program ending: “I will hope that our tax dollars have been utilized effectively to learn something from this because otherwise it’s a shame.”
Because of the grant, 1,000 women and their families in northeastern New Mexico have been connected to social services like food assistance and lactation counselors since 2019. More than 760 mothers have used the program for medical care, including home, telehealth, and clinic appointments. In its first year, 57% of the women identified as Hispanic and 5% as Indigenous.
Jade Vandiver, 25, said she feels “like I wouldn’t have made it without them.”
In the early months of her pregnancy, Vandiver slept during the day and struggled with diabetic hypoglycemic episodes. Vandiver’s husband repeatedly rushed her to the Clayton hospital’s emergency room because “we were scared I was going to go into a coma or worse.”
There, hospital staffers suggested Vandiver join the program. She eventually began traveling to specialists in Albuquerque for often weekly visits.
The program covered travel and hotel costs for the family. After months of checkups, she had a planned delivery of Ezra, who’s now a healthy 6-month-old. The boy watched his mother’s smile as she talked.
Without the program, Vandiver likely would have delivered at home and been airlifted out — possibly to the smaller Raton hospital.
Raton’s Miners Colfax is a small critical access hospital that recently closed its intensive care unit. The hospital sits just off Interstate 25, less than 10 miles south of the Colorado border, and its patients can be transient, Chief Nursing Officer Rhonda Moniot said. Maintaining the hospital’s obstetric program “is not easy, financially it’s not easy,” she said.
Moms from the area “don’t always seek care when they need to,” she said. Substance use disorders are common, she said, and those babies are often delivered under emergency conditions and prematurely.
“If we can get them in that first trimester … we have healthier outcomes in the end,” Moniot said, pulling up a spreadsheet on her computer.
At Raton’s hospital, 41% of mothers who gave birth before the RMOMS program began failed to show up for their first-trimester prenatal exams. But over two years — even as the covid-19 pandemic scared many patients away from seeking care — the number dropped to only 25% of mothers missing prenatal checkups during their first three months of pregnancy.
“I was, like, oh my God, it really made a difference,” said Moniot, who helped launch the program at Miners Colfax in 2019.
‘Let’s Not Let It Die’
Just a few weeks before Davila’s checkup in Clayton, the New Mexico program’s executive director, Colleen Durocher, traveled nearly 1,600 miles east to Capitol Hill to lobby for money.
Durocher said she cornered HRSA’s Morris at an evening event while in Washington, D.C. She said she told him the program is working but that the one year of planning plus three years of implementation paid for by the federal government was not enough.
“Let’s not let it die,” Durocher said. “It would be a real waste to let those successes just end.”
By April, Sen. Martin Heinrich (D-N.M.) said he was impressed by the program’s “lifesaving” work and asked for $1 million in the federal budget for fiscal year 2024. But the money, if approved, would likely not arrive before Durocher runs out of funding in late summer.
As the August deadline looms, Durocher said one obvious option would be to simply extend the grant. HRSA spokesperson Elana Ross said the agency cannot extend funding for the program. Each site, though, can reapply by offering to target a new population, include new hospitals or clinics, or provide services in a new area.
Of the 10 regional programs across the country, the one in New Mexico and two others are slated to end their pilots this year. Seven other programs — from Minnesota to Arkansas — are scheduled to end in 2025 or 2026. During their first two years, the 2019 awardees reported more than 5,000 women received medical care, and all three recorded a decrease in preterm births during the second year of implementation, according to HRSA.
The three initial programs also expanded their patient navigation programs to connect “hundreds of women to emotional support, insurance coverage, and social services, such as transportation and home visiting,” agency spokesperson Ross wrote in an email.
New Mexico Medicaid’s interim Director Lorelei Kellogg said her agency would like to “emulate” the program’s care coordination among hospitals and health staff in other areas of the state but also alter it to work best for different Indigenous and tribal cultures as well as African American partners.
There is money in the state’s budget to pay for patient navigators or community health workers, but there are no funds dedicated to support the maternity program, she said.
In the meantime, the program’s funding is set to run out just days before Davila’s baby is due in early September. In the coming months, Davila, like many mothers with an uncomplicated pregnancy, will have monthly prenatal telehealth visits, then biweekly and, as her due date nears, weekly.
“It’s nicer to be able to just pop in,” she said, adding that “it would be harder for the community” if the program didn’t exist.
Still, Davila may be one of the last moms to benefit from it.
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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Health Care Reform, Health Industry, Public Health, Rural Health, States, Hospitals, New Mexico, Pregnancy, Women's Health
El dolor, la esperanza y la ciencia chocan cuando los atletas recurren a los hongos mágicos
WAKEFIELD, Jamaica — El boxeador se sentía destrozado. Todos los días, se despertaba con dolor. A veces eran dolores de cabeza debilitantes. Otros, era su espalda. O sus puños. Sus costillas. Su nariz. Además, sufría de cambios de humor. Depresión. Ansiedad.
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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Pain, Hope, and Science Collide as Athletes Turn to Magic Mushrooms
If you or someone you know may be experiencing a mental health crisis, call or text the 988 Suicide & Crisis Lifeline at 988 or the Crisis Text Line by texting “HOME” to 741741. In Canada, call Talk Suicide Canada at 1-833-456-4566 or text 45645 from 4 p.m.-midnight ET.
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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