KFF Health News' 'What the Health?': On Abortion Rights, Ohio Is the New Kansas
The Host
Julie Rovner
KFF Health News
Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
Ohio voters — in a rare August election — turned out in unexpectedly high numbers to defeat a ballot measure that would have made it harder to pass an abortion-rights constitutional amendment on the ballot in November. The election was almost a year to the day after Kansas voters also stunned observers by supporting abortion rights in a ballot measure.
Meanwhile, the percentage of Americans without health insurance dropped to an all-time low of 7.7% in early 2023, reported the Department of Health and Human Services. But that’s not likely to continue, as states boot from the Medicaid program millions of people who received coverage under special eligibility rules during the pandemic.
This week’s panelists are Julie Rovner of KFF Health News, Emmarie Huetteman of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Rachel Roubein of The Washington Post.
Panelists
Emmarie Huetteman
KFF Health News
Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Rachel Roubein
The Washington Post
Among the takeaways from this week’s episode:
- It should not have come as much of a surprise that Ohio voters sided with abortion-rights advocates. Abortion rights so far have prevailed in every state that has considered a related ballot measure since the Supreme Court overturned Roe v. Wade, including in politically conservative states like Kentucky and Montana.
- Moderate Republicans and independents joined Democrats in defeating the Ohio ballot question. Opponents of the measure — which would have increased the threshold of votes needed to approve state constitutional amendments to 60% from a simple majority — had not only cited its ramifications for the upcoming vote on statewide abortion access, but also for other issues, like raising the minimum wage.
- A Texas case about exceptions under the state’s abortion ban awaits the input of the state’s Supreme Court. But the painful personal experiences shared by the plaintiffs — notable in part because such private stories were once scarce in public discourse — pressed abortion opponents to address the consequences for women, not fetuses.
- The uninsured rate hit a record low earlier this year, a milestone that has since been washed away by states’ efforts to strip newly ineligible Medicaid beneficiaries from their rolls as the covid-19 public health emergency ended.
- The promise of diabetes drugs to assist in weight loss has attracted plenty of attention, yet with their high price tags and coverage issues, one thorny obstacle to access remains: How could we, individually and as a society, afford this?
- Lawmakers are asking more questions about the nature of nonprofit, or tax-exempt, hospitals and the care they provide to their communities. But they still face an uphill battle in challenging the powerful hospital industry.
Also this week, Rovner interviews Kate McEvoy, executive director of the National Association of Medicaid Directors, about how the “Medicaid unwinding” is going as millions have their eligibility for coverage rechecked.
Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: KFF Health News’ “How the Texas Trial Changed the Story of Abortion Rights in America,” by Sarah Varney.
Joanne Kenen: Fox News’ “Male Health Care Leaders Complete ‘Simulated Breastfeeding Challenge’ at Texas Hospital: ‘Huge Eye-Opener’,” by Melissa Rudy.
Rachel Roubein: Stat’s “From Windows to Wall Art, Hospitals Use Virtual Reality to Design More Inclusive Rooms for Kids,” by Mohana Ravindranath.
Emmarie Huetteman: KFF Health News’ “The NIH Ices a Research Project. Is It Self-Censorship?” by Darius Tahir.
Also mentioned in this week’s episode:
- Politico’s “Abortion Rights Won Big in Ohio. Here’s Why It Wasn’t Particularly Close,” by Madison Fernandez, Alice Miranda Ollstein, and Zach Montellaro.
- KFF Health News’ “Seeking Medicare Coverage for Weight Loss Drugs, Pharma Giant Courts Black Influencers,” by Rachana Pradhan.
- Stat’s “Alarmed by Popularity of Ozempic and Wegovy, Insurers Wage Multi-Front Battle,” by Elaine Chen.
click to open the transcript
Transcript: On Abortion Rights, Ohio Is the New Kansas
KFF Health News’ ‘What the Health?’Episode Title: On Abortion Rights, Ohio Is the New KansasEpisode Number: 309Published: Aug. 10, 2023
[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]
Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping a day early this week, on Wednesday, Aug. 9, at 3:30 p.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hey, everybody.
Rovner: Rachel Roubein of The Washington Post.
Rachel Roubein: Hi, everybody.
Rovner: And my colleague and editor here at KFF Health News Emmarie Huetteman.
Emmarie Huetteman: Hey, everyone. Glad to be here.
Rovner: So later in this episode, we’ll have my interview with Kate McEvoy, executive director of the National Association of Medicaid Directors. She’s got her pulse on how that big post-public health emergency “Medicaid unwinding” is going. And she’ll share some of that with us. But first, this week’s news. I guess the biggest news of the week is out of Ohio, which, in almost a rerun of what happened in Kansas almost exactly a year ago, voters soundly defeated a ballot issue that would have made it harder for other voters this fall to reverse the legislature’s strict abortion ban. If you’re having trouble following that, so did they in Ohio. [laughs] This time, the fact that the abortion rights side won wasn’t as much of a surprise because every statewide abortion ballot question has gone for the abortion rights side since Roe v. Wade was overturned last year. What do we take away from Ohio? Other than it looked a lot like … the split looked a lot like Kansas. It was almost 60-40.
Kenen: It shows that there’s a coalition around this issue that is bigger than Democrat or Republican. Ohio was the classic swing state that has turned into a conservative Republican-voting state — not on this issue. This was clearly independents, moderate Republicans joined Democrats to … 60-40, roughly, is a pretty big win. Yes, we’ve seen it in other states. It’s still a pretty big win.
Roubein: I agree. And I think one of my colleagues, Patrick Marley, and I spent some time just driving around and traveling Ohio in July. And one of the things that we did find is that — this ballot measure to increase the threshold for constitutional amendments is 60% — it had in some, in many, ways turned into a proxy war over abortion. But, in some ways, both sides also didn’t talk about abortion when they were, you know, canvassing different voters. You know, they use different tools in the toolbox. I was following around someone from Ohio Right to Life and, you know, he very much said, “Abortion is the major issue to me.” But, you know, they tried to kind of bring together the side that supported this. Other issues like legalizing marijuana and raising the minimum wage, and, you know, the abortion rights side was very much a part of, you know, the opposition here. But when some canvassers went out — my colleague Patrick had traveled and followed some, and some, you know, kind of focused on other issues like, you know, voters having a voice in policy and keeping a simple majority rule.
Rovner: Yeah, I think it’s important — for those who have not been following this as closely as we have — what the ballot measure was was to make future ballot measures — and they said they were not going to have them in August anymore, which, this was the last one — in order to amend the constitution by referendum, you would need a 60% majority rather than a 50% majority. And just coincidentally, there is an abortion ballot measure on Ohio’s ballot for November, and it’s polling at about 58%. But, yes, this would have applied to everything, and it was defeated.
Kenen: And it’s part of a larger trend. It began before the overturning of Roe v. Wade. Over the last couple of years, you’ve seen conservative states move to tighten these rules for ballot initiatives. And that’s because more liberal positions have been winning. I mean, Medicaid, the Medicaid expansion on the ballot, has won, and won big. Only one was even close …
Rovner: In very red states!
Kenen: They often won very big in a number of very, very conservative states, places like Idaho and Nebraska. So, you know, there’s always been … the conventional wisdom is that, you know, the political parties are more extreme than many voters, that the Democratic Party is for the left and the Republican Party is for the right. And there are a lot of people who identify with one party or the other but aren’t … who are more moderate or, in this case, more liberal on Medicaid. And Medicaid … what was it, seven states? I think it’s seven. Seven really conservative states. And then the abortion has won in every single state. And there’s a little bit of conversation and it’s … very early. And I don’t know if it’s going to go anywhere, but if I’ve heard it and written a bit about it, conservative lawmakers have heard about it, too, which is there are groups interested in trying to get some gun safety initiatives on ballots. So that’s complicated. And it may not happen. But they’re seeing, I mean, that’s the classic example of both a criminal justice and a public health issue — so we can talk about it — a classic example where the country is much more in the center.
Rovner: Well, let us move to Texas, because that’s where we always end up when we talk about abortion. You may remember that lawsuit where several women who nearly died from pregnancy complications sued the state to clarify when medical personnel are able to intercede without being subjected to fines and/or jail sentences. Well, the women won, at least for a couple of days. A Texas district judge who heard the case ruled in their favor, temporarily blocking the Texas ban for women with pregnancy complications. But then the state appealed, and a Texas appeals court blocked the lower-court judge’s blocking of part of the ban. If you didn’t follow that, it just means that legally nothing has changed in Texas. And now the case goes to the Texas Supreme Court, which has a conservative majority. So we pretty much know what’s going to happen. But whether these women ultimately win or lose their case may not be the most important thing. And, to explain why I’m going to do my extra credit early this week. It’s by my KFF Health News colleague Sarah Varney. It’s called “How the Texas Trial Changed the Story of Abortion Rights in America.” She writes that this trial was particularly significant because it put abortion foes on the defensive by graphically depicting harm to women of abortion bans — rather than to fetuses. And it’s also about the power of people publicly telling their stories. I’ve done a lot of stories over the years about women whose very wanted pregnancies went very wrong, very late. And, I have to tell you, it’s been hard to find these women. And when you find them, it’s been really hard to get them to talk to a journalist. So, the fact that we’re seeing more and more people actually come out publicly, you know, may do for this issue what, you know, perhaps what gay rights, you know, what people coming out as gay did for gay marriage? I don’t know. What do you guys think?
Kenen: Well, I think these stories have been really compelling, but they’re also, they’re the most dramatic and maybe easiest to push back. But it’s, you know, there’s a whole lot of other reasons women want abortions. And the focus — and it’s life and death, so the focus, quite rightfully, has to be on these really extreme cases. But that’s not … it’s still in some ways shifting attention from the larger political discussion about choice and rights. But, clearly, some of these states, we’ve seen so many stories of women who, their lives are at stake, their doctors know it, and they just don’t think they have the legal power; they’re afraid of the consequences if they’re second-guessed. There are tremendous financial and imprisonment [risks] for a doctor who is deemed to have done an unnecessary abortion. And this idea that’s taken hold … among some conservatives is that there’s never a need for a medical abortion. And that’s just not true.
Rovner: And yet, I mean, what this trial and a lot of things in Sarah’s piece too point out is that that line between miscarriage and abortion is really kind of fuzzy in a lot of cases. You know, if you go to the hospital with a miscarriage and they’re going to say, “Well, did you initiate this miscarriage?” And we’ve seen women thrown in jail before for losing pregnancies, with them saying, “You know, you threw yourself down the stairs to end this pregnancy.” That actually happened, I think it was in Indiana. So this is —
Kenen: And miscarriage is very common.
Rovner: That was what I was saying.
Kenen: Early miscarriage is very common. Very, very common.
Huetteman: One of the things that’s so striking about the past year, since Dobbs overturned Roe v. Wade ,is that we’ve seen this kind of national education about what pregnancy is and how dangerous it can be and how care needs to really be flexible to meet those sorts of challenges. And this actually got me thinking about something that another familiar voice on this podcast, Alice Miranda Ollstein, and some colleagues wrote this morning about the Ohio outcome, which is they pointed out that the anti-abortion movement really hasn’t evolved in terms of the arguments that they’re making in the past year about why abortion should continue to be less and less available. Meanwhile, we’ve got these, like, really incredible, really emotional, moving stories from women who have experienced this firsthand. And that’s a hard message to overcome when you’re trying to reach voters in particular.
Rovner: And it’s interesting; both sides like to take — you know, they all go to the hardest cases. So, for years and years, the anti-abortion side has, you know, has gone to the hardest cases. And that’s why they talk about abortion in the ninth month up till birth, which isn’t a thing, but they talk about it. And you know, now the abortion rights side has some hard cases now that abortions are harder to get. Well, while we are on the subject of Texas lawsuits, States Newsroom — and thank you for sending this my way, Joanne — has a story reporting that the publisher of the scientific paper that both the lower court judge and the appeals court judges used to conclude that the abortion drug mifepristone causes frequent complications — it does not — is being reviewed for potential scientific misconduct. The paper comes from the Charlotte Lozier Institute, which is the research arm of the anti-abortion group the Susan B. Anthony List. Sage, which is the publisher of the journal that the paper appeared in, has posted something called an expression of concern, saying that the publisher and editor, quote, “were alerted to potential issues regarding the representation of data in the article and author conflicts of interest. SAGE has contacted the authors of this article and an investigation is underway.” This was sort of a whistleblower by a pharmacist who looked at the way the data in this paper was put together and says, “No, that’s really very misleading.” I don’t think I’ve ever seen this, though; I’ve never seen a scientific paper that’s now being questioned for its political bent, a peer-reviewed scientific paper. I mean, this could change a lot of things, couldn’t it?
Kenen: Well, not if people decide that they still think it’s true. I mean, look at — you know, the vaccine autism paper was retracted. That wasn’t initially political. It’s become more political over the years; it wasn’t political at the time. That was retracted. And people have been jumping up and down screaming, “It was retracted! It was retracted!” And, you know, millions of people still believe it. So, I mean, legally, I’m not sure how much it changes. I mean, I thought we had all heard that there were flaws in this study. This article was good because I hadn’t been aware of how deeply flawed and in all the many ways it was flawed. And also the whistleblower yarn was interesting. I’m not sure how much it changes anything.
Rovner: Well, I’m thinking not in terms of this case. And by the way, I think we didn’t say this, that the study was of emergency room visits by women who’d had either surgical or medical abortions. And the contention was that medical abortions were more dangerous than surgical abortions because more women ended up in the emergency room. But as several people have pointed out, more people ended up in the emergency room after medical abortions because there have been so many more medical abortions over the years. I mean, you don’t actually have to be a data scientist to see some of the problems.
Kenen: Right. And some of them also weren’t that — really, were nervous, and they didn’t know what was normal and they went to the ER because they were scared and they really were safe. They were not — they didn’t need — you know, they just weren’t sure how much pain and discomfort or bleeding you’re supposed to have. And they went and they were reassured and were sent home. So it’s not even that they really had a medical emergency or that they were harmed.
Rovner: Or that they had a complication.
Kenen: Right. There were many flaws pointed out with this research.
Rovner: But my broader question is, I mean, if people are going to start questioning the politics of scientific papers, I mean, I could see the other side going after this.
Kenen: Well, there’s climate science, too, that’s bad. I mean, I don’t think this is actually unique. I think it’s egregious. But there were studies minimizing the risk of smoking, which was also a political business, commercial. Climate is certainly political. I mean, I think this is sort of the most politicized and most acute example, but I don’t think it’s the only one.
Roubein: And I think, Julie, as you’d mentioned, I think when [U.S. District Judge] Matthew Kacsmaryk in Texas came down with his decision — you know, for instance, there are media outlets — that my colleagues at the Post did a story just kind of unpacking some of the kind of flaws and some of the studies that were used to make, you know, a court decision.
Rovner: Yeah, to give the judge what he assumes to be evidence that this is a dangerous drug. So it’s — yeah.
Kenen: Which he came in believing, we know, from the profiles of him and his background.
Rovner: Right. All right, well, let us move on. The official Census Bureau estimate of how many people lack health insurance won’t be out until next month. But the Department of Health and Human Services is out with a report based on that other big federal population survey that shows the uninsured rate early this year was at its lowest level since records started being kept, which I think was in the 1980s: 7.7%. Now, that’s clearly going to be the high point for the fewest number of people uninsured, at least for a while, because clearly not all of the millions of people who are losing or about to lose their Medicaid coverage are going to end up with other insurance. But I remember — Joanne, you will, too — when the rate was closer to 18% … was a huge news story, and the thing that triggered the whole health reform debate in the first place. I’m surprised that there’s been so little attention paid to this.
Kenen: Because, you know … [unintelligible] … it’s so yesterday. And also, as you alluded to, you know, we’re in the middle of the Medicaid unwinding. So the numbers are going up again now. And we don’t know. We know that it’s a couple of million people. I think 3 million might be the last —
Rovner: I think it’s 4 [million], it’s up to 4.
Kenen: Four, OK. And some of them will get covered again and some of them will find other sources of coverage. But right now, there’s an uptick, not a downtick.
Roubein: And I think when you look at just, like, estimates of what the insured and the uninsured rates would be in 2030, like, the CMS’ [Centers for Medicare & Medicaid Services] analysis, one of the other questions is, you know, whether the enhanced Obamacare subsidies continue past 2025. So there’s Medicaid and then there’s also some other kind of question marks and cliffs coming up on how and whether it will fluctuate.
Rovner: No, it’s worth watching. And remember, when the census numbers come out, those will be for 2022. Well, moving on, we have two stories this week looking at the potential cost of those breakthrough obesity drugs, but through two very different lenses. One is from my KFF Health News colleague Rachana Pradhan, details how the makers of the current “it” drug, Ozempic, which is Novo Nordisk, in an effort to get the votes to lift the Medicare payment ban on weight loss drugs, is quietly contributing large amounts of money to groups like the Congressional Black Caucus Foundation and the Congressional Hispanic Caucus Institute. It’s sort of a backdoor lobbying that’s pretty age-old, but that doesn’t mean it doesn’t work. The other story, by Elaine Chen at Stat, looks at how health insurers are pushing back hard against the off-label use of diabetes medications that also work to help people lose weight. They’re doing things like allowing the more expensive weight loss drugs only if people have tried and failed other methods or disallowing them if the other methods had been slightly successful. So, if you take a lesser drug and you lose enough weight, they won’t let you take the better drug because, look, you lost weight on the other drug. We’ve talked about this, obviously, before: These drugs, on the one hand, have the potential to make a lot of people both healthier and happier. There’s a study out this week that shows that Mounjaro, the Eli Lilly drug, actually reduces heart disease by 20%.
Kenen: In people who have heart disease.
Rovner: Right, in people who have heart disease.
Kenen: It’s not lowering everybody’s risk.
Rovner: But still, I mean, everybody’s — well, I mean, there are medical indications for using these drugs for weight loss. But if everybody who wants them could get them, it would literally break the bank. Nobody can afford to give everybody who’s eligible for these drugs these drugs. Is the winner here going to be the side with the most effective lobbying, or is that too cynical?
Huetteman: Isn’t that always the winner? Speaking of cynical.
Rovner: Yeah, in health care.
Kenen: Well, I mean, I also think there’s questions about, like, these drugs clearly are really wonderful for people who they were designed for; you don’t have to be on insulin. They’re having not just weight loss and diabetes. There are apparently cardiac and other — you know, these are probably really good drugs. But there are a lot of people who do not have diabetes or heart disease who want them because they want to lose 20 pounds. And some of them are being told you have to take it for the rest of your life. I mean, I just know this anecdotally, and I’m sure we all know it anecdotally.
Rovner: Right. It’s like statins.
Kenen: Yes.
Rovner: Or blood pressure medication. If you stop taking your blood pressure medication, your blood pressure goes back up.
Kenen: Right. So, I mean, should the goal for the weight loss be, “OK, this is going to help you take off that weight and then you’re going to have to maintain it through diet and exercise and healthy lifestyle,” blah, blah, blah, which is hard for people. We know that. Or are we putting healthy people on a really expensive drug that changes an awful lot of things about their body indefinitely? We don’t have safety data for lifelong use in otherwise healthy people. So, you know, I’m always a little worried because even the best clinical trial is small compared to the entire — it’s small and it’s time-limited. And maybe these drugs are going to turn out to be absolutely phenomenal and we’re going to all live another 20 healthy years. But maybe not, you know. Or maybe they’re going to be really great for a certain subpopulation, but, you know, we’re not going to want to put it in the water supply. So, I still think that there’s this sort of pell-mell rush. And I think it’s partly because there’s a lot of money at stake. And it’s also, like, most people who are overweight have tried to lose it, and it’s very difficult to lose and maintain weight. So, you know, people want an easier way to do it. And I think the other thing is right now it’s an injection. There are side effects for some people on discomfort. There probably will be an oral version, a pill, sometime fairly soon, which will open — you know, there are people who don’t want to take a shot who would take a pill. It also means you might be able to tell — I mean, I don’t know the science of the pills, but it would make sense to me that you could take a lower dose, you know, maybe ease into it without the side effects, or could you stay on it longer with fewer problems? I mean, we’re just the very beginning of this, but it’s a huge amount of money.
Rovner: Yeah. You could see — I mean, my big question, though, is why can’t we force the drugmakers to lower the price? That would, if not solve the problem, make it a lot better. I mean, really, we’re going to have to wait until there is generic competition?
Kenen: It’s not just this.
Rovner: Yeah.
Kenen: I mean, it’s all sorts of cancer treatments and it’s hepatitis treatments. And it’s, I mean, there’s a lot of expensive drugs out there. So, this one just has a lot of demand because it makes you skinny.
Rovner: Well, that was the thing. We went through this with the hepatitis C drugs, which were really super expensive. It’s much more like that.
Kenen: Well, they seemed super expensive at the time —
Rovner: Not so much anymore.
Kenen: — but maybe for a thousand dollars, in retrospect.
Rovner: All right. Well, let’s move on. So, speaking of powerful lobbies, let’s talk about hospitals. Iowa Republican Sen. Chuck Grassley and Massachusetts Democrat Elizabeth Warren — now, there is an unlikely couple — are among those asking the IRS to more carefully examine tax-exempt hospitals to make sure they’re actually benefiting the community in exchange for not paying taxes, which is supposed to be the deal. Now, Sen. Grassley has been on this particular hobbyhorse for many, many years, I think probably more than 20, but not much ever seems to come of this. I can’t tell you how many workshops I’ve been to on, you know, how to measure community benefits that tax-exempt hospitals are providing. Any inkling that this time is going to be any different?
Roubein: Well, hospitals don’t tend to be sort of the losers. They try and kind of frame themselves as, like, “We’re your sort of friendly neighborhood hospital,” and every — I mean, every congressman, most congressmen have, you know, hospitals in their district. So they they get lobbied a lot, though, you know — I mean, this is a different issue, but particularly on the House side, hospitals are facing site-neutral payments, which if that actually went through Congress would be a loss. So yeah, but lawmakers have found it in general hard to take on the hospital industry.
Rovner: Yeah, very much so.
Kenen: Yeah. I mean, I think that we think of nonprofits and for-profits as, they’re different, but they’re not as different as we think they are, in that, you know, nonprofits are getting a tax break and they have to reinvest their profits. But it doesn’t mean they’re not making a lot of money. Some of them are. I mean, some of them have, you know, we’ve all walked into fancy nonprofits with, you know, fancy art and marble floors and so on and so forth. And we’ve all been in nonprofits that are barely keeping their doors open. So it’s your tax status. It’s not really, you know, your ethical status or the quality of care. I mean, there’s good nonprofits, there’s good for-profits. You know, this whole thing is like, if I were a hospital, I would be getting this huge tax break, and what am I doing to deserve it? And that’s the question.
Rovner: And I think the argument is, you know, that the 7.7% uninsured we were talking about, that hospitals are supposed to be providing care as part of their community benefit that the federal government now is ending up paying for. I think that’s sort of the frustration. If nonprofit hospitals were doing what they were supposed to do, it would cost federal and state governments less money, which always surprises me because this is not gone after more. I mean, Grassley has spent his whole career working on various types of government fraud. So this is totally in line for him. But it’s never just seemed to be a big priority for any administration.
Huetteman: There’s a little bit of an X factor here. Look at the fact that Grassley and Warren are talking about this publicly now. Maybe I’m just really optimistic from all the journalism we’ve been doing about projects like “Bill of the Month.” But the reality is that a lot of people are now seeing reporting that’s showing to them what nonprofit hospitals are actually doing when it comes to pursuing patients who don’t pay bills. And what it means to have community benefit comes into question a lot when you talk about wage garnishment, suing patients who are low-income for their medical debt. These are things that journalists have uncovered over and over again, happening at — ding, ding, ding — nonprofit hospitals. It’s harder to argue that hospitals are just doing their best for people when you have these stories of poor people who are losing their homes over unpaid medical bills, for instance. And I think that right now, when we’re in this political moment where health care costs are so, so potent to people and so important, I mean, could we see that this will actually be more effective, that we’re heading towards something that’s more effective? Maybe.
Rovner: Well, repeats the journalist, as we all are, the power of storytelling. Definitely the public is primed. I imagine that’s why they’re doing it now. We’ll see what comes of it.
Kenen: think the public is primed for bad practices. I’m not sure how many patients understand if the hospital they go to is a nonprofit or a for-profit. I think the public understands that everything in health care costs too much and that there are bad actors and greed. There’s a difference between profit and greed, and I think many people would say that we’re now in an era of greed. And not everybody in the health care sector — before anybody calls us up and shouts, “Not everybody who provides care is greedy” — but we’ve seen, you know, it is clearly out there. You know, you had Zeke Emanuel on a couple of weeks ago. Remember what he said, that, you know, 10 years ago, some people still liked their health care and now nobody likes their health care, rich or poor.
Rovner: Yeah, he’s right. All right. Well, that is this week’s news. Now, we’ll play my interview with Kate McEvoy of the National Association of Medicaid Directors about how the Medicaid unwinding is going. And one note before you listen: Kate frequently refers to the federal CMCS, which is not a misspeak; it stands for the Center for Medicaid and CHIP Services, which is the branch of CMS, the Centers for Medicare & Medicaid Services, that deals with Medicaid. So, here’s the interview:
I am pleased to welcome to the podcast Kate McEvoy, executive director of the National Association of Medicaid Directors, which is pretty much exactly what the name says, a group where state Medicaid officials can share information and ideas. Kate, welcome to “What the Health?”
Kate McEvoy: Good afternoon. Thanks for having me.
Rovner: Obviously, the Medicaid unwinding, which we have talked about a lot on the podcast, is Topic A for your members right now. Remind us again which Medicaid recipients are having their coverage eligibility rechecked? It’s not just those in the expansion group from the Affordable Care Act, right?
McEvoy: It’s not, no. Each and every person served by the country nationwide has to be reevaluated from an eligibility standpoint this year.
Rovner: What do we know about how it’s going? We’re seeing lots of reports that suggest the vast majority of people losing coverage are for paperwork reasons, not because they’ve been found to be no longer eligible. I know you recently surveyed your members. What are they telling you about this?
McEvoy: So, I first want to say this is an unprecedented task and it’s obviously historically significant for everyone served by the program. The volume of the work, and also the complexity, makes it a challenging task for all states and territories. But what we are seeing to date is a few things. First, we have seen an incredible effort on the part of states and territories to saturate really every means of communicating with their membership, really getting out that message around connecting with the programs, especially if an individual has moved during the period of the pandemic, which is very typical for people served by Medicaid. So that saturation of messaging and use of new means of connecting with people, like texting, really does represent a tremendous advance for the Medicaid program that has traditionally relied on a lot of complex, formal, legal notices to people. So that seems like a very positive thing. What we are seeing, and this is not unexpected, is that, you know, for reasons related to complex life circumstances and competing considerations, many people are not responding to those notices, no matter how we are transmitting those messages. And so that is a piece that is of great interest and concern to all of us, notably Medicaid directors wanting to make sure that eligible folks do not lose coverage simply because they are not responsive to the requests for more information. So we’re at a point where we’re beyond that initial push around messaging and now are really focused on means of protecting people who remain eligible, either through automatic review of their eligibility — the ex parte process — or by restoring them through such means as reconsideration. That’s really the main focus right now.
Rovner: And there’s that 90-day reconsideration window. Is that … how does that work?
McEvoy: So the federal law gives this period of 90 days to families and children within which they can be renewed with very little effort, essentially removing the responsibility to complete a new application. We also have long-standing help to people called “presumptive eligibility.” So if someone goes to a federally qualified health center or, more unfortunately, goes to the hospital, many of those types of providers can restore someone’s eligibility. So those are important protective pieces. We also know from the survey that you mentioned of our membership that many states and territories are extending those reconsideration protections to all coverage groups — also including older adults and people with disabilities.
Rovner: So are there any states that are doing anything that’s different and innovative? I remember when CHIP [the federal Children’s Health Insurance Program] was being stood up — and boy, that was a long time ago, like 1999 — South Carolina put flyers in pizza boxes, and some other state put flyers in sneaker boxes for back-to-school stuff. Are there better ways to maybe get ahold of these people?
McEvoy: So I think the answer is: a lot of different channels. Our colleagues in Louisiana have a partnership with Family Dollar stores to essentially feature this information on receipts. There’s a lot of work at pharmacy counters. Some of the big chain pharmacies have QR codes and other means of prompting people around their Medicaid eligibility. There’s going to be a big push for the back-to-school effort. And I think CMS and states are really interested, particularly in ensuring that children do not lose coverage even if their parents have regained employment and they’re no longer eligible. Another thing that’s going on is a lot of innovation in the means of enabling access to information. So many states have put in place personal apps through which people can track their own eligibility. There’s interest and some uptake of the so-called pizza-tracker function — so you can kind of see where you’re situated in that pipeline — and also a lot of use of automation to help call people back if they’re trying to get to state call centers. So really, all of those types of strategies … we’re seeing a huge amount of effort across the country.
Rovner: How’s the cooperation going with the Department of Health and Human Services? I know that … they seem to be not happy with some states. Are they being helpful, in general?
McEvoy: They’re being extraordinarily helpful. I would say that we often talk about Medicaid representing a federal-state equity partnership, and we’ve seen that manifest from the beginning of the first notice of the certainty around the start of the unwinding. CMCS has consistently offered guidance to states. They work with states using a mitigation approach as opposed to moving rapidly to compliance. We feel mitigation is the best way of essentially working out the strategies that are going to best protect continuing eligibility for people at the state level. And we really appreciate CMS’ efforts on that. We understand they do have to ensure accountability across the country, and we’re mutually committed to that.
Rovner: You better explain mitigation strategies.
McEvoy: Yeah, so this is a year where we are calling the question on eligibility standards that help ensure that the pathway to Medicaid coverage is a smooth one, and also that there is continuity of coverage. So, for any state that wasn’t yet meeting all those standards, CMCS essentially entered into an agreement with the state or territory to say, here is how you will get there. And that could have involved some means of improving the automatic renewals for Medicaid. It could have meant relying on an integrated eligibility processes. There are a lot of different tools and strategies that were put in place, but essentially that is a path to every state and territory coming into full compliance.
Rovner: Is there anything unexpected that’s happening? I know so much of this was predicted, and it was predicted that the states that went first that, you know, were really in a hurry to get extra people off of their rolls seem to be doing just that: getting extra people off of their rolls. Are you surprised at the differences among states?
McEvoy: I think that there have definitely been differences among states in terms of the tools they have used from a system standpoint, but I don’t see any differences in terms of retention of eligible people. That remains a shared goal across the entire country. And again, this is a watershed point where we have the opportunity to bring everyone to the same standards, ongoing, so that we help to prevent some of the heartache of the eligibility process for folks ongoing.
Rovner: Anything else I didn’t ask?
McEvoy: Well, I think that piece around the reconsideration period is particularly important. We are struck by there being probably less literacy around that option, and that’s something we want to continue to promote. The other piece I’d wind up by saying is that the Medicaid program is always available for people who are eligible. So in the worst-case scenario in which an otherwise eligible person loses coverage, they can always come back and be covered. This is in contrast to private insurance that may have an annual open enrollment period. Medicaid, as you know, is available on a rolling basis, and we want to keep reinforcing that theme so that no one goes with a gap in coverage.
Rovner: Kate McEvoy, thank you very much. And I hope we can call you back in a couple of months.
McEvoy: I would be very happy to hear from you.
Rovner: OK. We are back and it’s time for our extra credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. I did mine already. Emmarie, why don’t you go next?
Huetteman: My story this week comes from KFF Health News, my colleague Darius Tahir. He has a story called “The NIH Ices a Research Project. Is It Self-Censorship?” Now, the story talks about the fact that the former head of NIH Francis Collins, was, as he was leaving, announcing an effort to study health communications. And we’re talking about not just doctor-to-patient communications, but actually also how mass communications impact American health. But as Darius found out, the acting director quietly ended the program as NIH was preparing to open its grant applications. And officials who spoke with us said that they think political pressure over misinformation is to blame. Now, we don’t have to look too far for examples of conservative pressure over misinformation and information these days. In particular, there’s a notable one from just last month out of a Louisiana court, the federal court decision that blocked government officials from communicating with social media companies. You really don’t have to look too far to see that there’s a chilling effect on information. And we’re talking about the NIH was going to study or rather fund studies into communication and information. Not misinformation, information: how people get information about their health. So it’s a pretty interesting example and a really great story worth your read.
Rovner: And I’ve done nothing but preach about public health communication for three years now.
Kenen: It’s a very good story.
Rovner: Yeah, it was a really good story. Rachel, you’re next.
Roubein: All right. This story is called “From Windows to Wall Art, Hospitals Use Virtual Reality to Design More Inclusive Rooms for Kids,” by Stat News, by Mohana Ravindranath. And I thought this story was really interesting because she kind of dived into what Mohana called “a budding movement to make architecture more inclusive” for the people and patients who are spending a lot, a lot of time in hospital walls. And what some researchers are doing is using virtual reality to essentially gauge how comfortable children who are patients are in hospital rooms. And she talked to researchers at Berkeley who were using these, like, virtual reality headsets to kind of study and explore mocked-up hospital rooms. And, I didn’t know a ton about this field. I mean, apparently it’s not new, but it’s this kind of growing sort of movement to make patients more comfortable in the space that they’re inhabiting for perhaps long periods of time.
Rovner: I went to a conference on architecture, hospital architecture, making it more patient-centered, 10 years ago. But my favorite thing that I still remember from that is they talked about putting art on the ceiling because people are either in bed or they’re in gurneys. They’re looking up at the ceiling a lot. And ceilings are scary in hospitals. So that was one of the things that I took away from that. OK, Joanne, now it’s your turn.
Kenen: OK. This is from Fox News. And yes, you did hear that right. It’s by Melissa Rudy, and the headline is “Male Health Care Leaders Complete ‘Simulated Breastfeeding Challenge’ at Texas Hospital: ‘Huge Eye-Opener’.” So at Covenant Health, they had a bunch of high-level guys in suits pretend they were nursing and/or pumping mothers, and they had to nurse every three hours for 20 minutes at a time. And they found it was quite difficult and quite cumbersome and they didn’t have enough privacy. And as one of them said, “There was no way to multitask.” But trust me, if you have two kids, you have to figure that out, too. So it was a really good story.
Rovner: Some of these things that we feel like should be required everywhere, but it was a great read; it was a really good story. OK, that is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us too. Special thanks this week to Zach Dyer, sitting in for the indefatigable Francis Ying. And as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me or X me or whatever; I’m @jrovner. And also on Bluesky and Threads. Rachel?
Roubein: @rachel_roubein — that’s on Twitter.
Rovner: Joanne.
Kenen: In most places I’m @JoanneKenen. On Threads, I’m @joannekenen1.
Rovner: Emmarie.
Huetteman: And I am @emmarieDC.
Rovner: We will be back in your feed next week. Until then, be healthy.
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KFF Health News' 'What the Health?': Another Try for Mental Health ‘Parity’
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Julie Rovner
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Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
The Biden administration continued a bipartisan, decades-long effort to ensure that health insurance treats mental illnesses the same as other ailments, with a new set of regulations aimed at ensuring that services are actually available without years-long waits or excessive out-of-pocket costs.
Meanwhile, two more committees in Congress approved bills this week aimed at reining in the power of pharmacy benefit managers, who are accused of keeping prescription drug prices high to increase their bottom lines.
This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Sarah Karlin-Smith of the Pink Sheet.
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Joanne Kenen
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Sarah Karlin-Smith
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Among the takeaways from this week’s episode:
- The Biden administration’s new rules to enforce federal mental health parity requirements include no threat of sanctions when health plans do not comply; noncompliance with even the most minimal federal rules has been a problem dating to the 1990s. Improving access to mental health care is not a new policy priority, nor a partisan one, yet it remains difficult to achieve.
- With the anniversary of the 988 Suicide & Crisis Lifeline, more people are becoming aware of how to access help and get it. Challenges remain, however, such as the hotline service’s inability to connect callers with local care. But the program seizes on the power of an initial connection for someone in a moment of crisis and offers a lifeline for a nation experiencing high rates of depression, anxiety, and suicide.
- In news about the so-called Medicaid unwinding, 12 states have paused disenrollment efforts amid concerns they are not following renewal requirements. A major consideration is that most people who are disenrolled would qualify to obtain inexpensive or even free coverage through the Affordable Care Act. But reenrollment can be challenging, particularly for those with language barriers or housing insecurity, for instance.
- With a flurry of committee activity, Congress is revving up to pass legislation by year’s end targeting the role of pharmacy benefit managers — and, based on the advertisements blanketing Washington, PBMs are nervous. It appears legislation would increase transparency and inform policymakers as they contemplate further, more substantive changes. That could be a tough sell to a public crying out for relief from high health care costs.
- Also on Capitol Hill, far-right lawmakers are pushing to insert abortion restrictions into annual government spending bills, threatening yet another government shutdown on Oct. 1. The issue is causing heartburn for less conservative Republicans who do not want more abortion votes ahead of their reelection campaigns.
- And the damage to a Pfizer storage facility by a tornado is amplifying concerns about drug shortages. After troubling problems with a factory in India caused shortages of critical cancer drugs, decision-makers in Washington have been keeping an eye on the growing issues, and a response may be brewing.
Also this week, Rovner interviews KFF Health News’ Céline Gounder about the new season of her “Epidemic” podcast. This season chronicles the successful public health effort to eradicate smallpox.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: The Nation’s “The Anti-Abortion Movement Gets a Dose of Post-Roe Reality,” by Amy Littlefield.
Joanne Kenen: Food & Environment Reporting Network’s “Can Biden’s Climate-Smart Agriculture Program Live Up to the Hype?” by Gabriel Popkin.
Anna Edney: Bloomberg’s “Mineral Sunscreens Have Potential Hidden Dangers, Too,” by Anna Edney.
Sarah Karlin-Smith: CNN’s “They Took Blockbuster Drugs for Weight Loss and Diabetes. Now Their Stomachs Are Paralyzed,” by Brenda Goodman.
Also mentioned in this week’s episode:
- CNN’s “Medicaid Disenrollments Paused in a Dozen States After Failure to Comply With Federal Rules,” by Tami Luhby.
- Abortion, Every Day’s “Why Are OBGYNs Being Forced to Go to Texas?” by Jessica Valenti.
- Politico’s “GOP Looks to Spending Fights for Wins on Abortion, Trans Care, Contraception,” by Alice Miranda Ollstein.
- KFF Health News’ “A Year With 988: What Worked? What Challenges Lie Ahead,” by Colleen DeGuzman.
click to open the transcript
Transcript: Another Try for Mental Health ‘Parity’
KFF Health News’ ‘What the Health?’Episode Title: Another Try for Mental Health ‘Parity’Episode Number: 307Published: July 27, 2023
[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]
Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, July 27, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So, here we go. We are joined today via video conference by Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hi, everybody.
Rovner: Sarah Karlin-Smith, the Pink Sheet.
Sarah Karlin-Smith: Hi, Julie.
Rovner: And Anna Edney of Bloomberg News.
Edney: Hello.
Rovner: Later in this episode, we’ll have my interview with my KFF colleague Céline Gounder about the new season of her podcast “Epidemic,” which tracks one of the last great public health success stories, the eradication of smallpox. But first, this week’s news. I want to start this week with mental health, which we haven’t talked about in a while — specifically, mental health parity, which is both a law and a concept, that mental ailments should be covered and reimbursed by health insurance the same way as a broken bone or case of pneumonia or any other — air quotes — “physical ailment.” Policymakers, Republican and Democrat, and the mental health community have been fighting pretty much nonstop since the mid-1990s to require parity. And despite at least five separate acts of Congress over that time — I looked it up this week — we are still not there yet. To this day, patients with psychiatric illnesses find their care denied reimbursement, made difficult to access, or otherwise treated as lesser. This week, the Biden administration is taking another whack at the issue, putting out proposed rules it hopes will start to close the remaining parity gap, among other things by requiring health plans to analyze their networks and prior authorization rules and other potential barriers to care to ensure that members actually can get the care they need. What I didn’t see in the rules, though, was any new threat to sanction plans that don’t comply — because plans have been not complying for a couple of decades now. How much might these new rules help in the absence of a couple of multimillion-dollar fines?
Edney: I had that same question when I was considering this because I didn’t see like, OK, like, great, they’re going to do their self-policing, and then what? But I do think that there’s the possibility, and this has been used in health care before, of public shaming. If the administration gets to look over this data and in some way compile it and say, here’s the good guys, here’s the bad guys, maybe that gets us somewhere.
Rovner: You know, it strikes me, this has been going on for so very long. I mean, at first it was the employer community actually that did most of the negotiating, not the insurers. Now that it’s required, it’s the insurers who are in charge of it. But it has been just this incredible mountain to scale, and nobody has been able to do it yet.
Kenen: And it’s always been bipartisan.
Rovner: That’s right.
Kenen: And it really goes back to mostly, you know, the late Sen. [Paul] Wellstone [(D-Minn.)] and [Sen. Pete] Domenici [(R-N.M.)], both of whom had close relatives with serious mental illness. You know, Domenici was fairly conservative and traditional conservative, and Wellstone was extremely liberal. And they just said, I mean, this — the parity move began — the original parity legislation, at least the first one I’m aware of. And it was like, I think it was before I came to Washington. I think it was in the ’80s, certainly the early — by the ’90s.
Rovner: It was 1996 when when the first one actually passed. Yeah.
Kenen: I mean, they started talking about it before that because it took them seven or eight years. So this is not a new idea, and it’s not a partisan idea, and it’s still not done. It’s still not there.
Edney: I think there’s some societal shift too, possibly. I mean, we’re seeing it, and maybe we’re getting closer. I’ve seen a lot of billboards lately. I’ve done some work travel. When I’m on the road, I feel like I’m always seeing these billboards that are saying mental health care is health care. And trying to hammer that through has really taken a long time.
Rovner: So while we are on the subject of mental health, one of the good things I think the government has done in the last year is start the 988 Suicide & Crisis Lifeline, which turned 1 this month. Early data from shifting the hotline from a 10-digit number to a three-digit one that’s a lot easier to remember does suggest that more people are becoming aware of immediate help and more people are getting it. At the same time, it’s been able to keep up with the demand, even improving call answering times — I know that was a big concern — but there is still a long way to go, and this is hardly a panacea for what we know is an ongoing mental health crisis, right?
Karlin-Smith: This is a good first step to get people in crisis help without some of the risks that we’ve seen. If you go towards the 911 route, sometimes police are not well trained to handle these calls and they end in worse outcomes than necessary. But then you have to have that second part, which is what we were talking about before, which is the access to the longer-term mental health support to actually receive the treatment you need. There’s also some issues with this hotline going forward in terms of long-term funding and, you know, other tweaks they need to work out to make sure, again, that people who are not expecting to interact with law enforcement actually don’t end up indirectly getting there and things like that as well.
Kenen: Do any of you know whether there’s discussion of sort of making people who don’t remember it’s 988 and they call 911 — instead of dispatching cops, are the dispatchers being trained to just transfer it over to 988?
Rovner: That I don’t know.
Kenen: I’m not aware of that. But it just sort of seems common sense.
Rovner: One thing I know they’re working on is, right now I think there’s no geolocation. So when you call 988, you don’t necessarily get automatically referred to resources that are in your community because they don’t necessarily know where you’re calling from. And I know that’s an effort. But yeah, I’m sure there either is or is going to be some effort to interact between 988 and 911.
Kenen: It’s common sense to us. It doesn’t mean it’s actually happening. I mean, this is health care.
Rovner: As we point out, this is mental health care, too.
Kenen: Yeah, right.
Rovner: It’s a step.
Kenen: But I think that, you know, sort of the power of that initial connection is something that’s easy for people to underestimate. I mean, my son in college was doing a helpline during 2020-2021. You know, he was trained, and he was also trained, like, if you think this is beyond what a college-aged volunteer, that if you’re uncertain, you just switched immediately to a mental health professional. But sometimes it’s just, people feel really bad and just having a voice gets them through a crisis moment. And as we all know, there are a lot of people having a lot of crisis moments. I doubt any of us don’t know of a suicide in the last year, and maybe not in our immediate circle, but a friend of a friend, I mean, or, you know — I know several. You know, we are really at a moment of extreme crisis. And if a phone call can help some percentage of those people, then, you know, it needs to be publicized even more and improved so it can be more than a friendly voice, plus a connection to what, ending this repetition of crisis.
Rovner: I feel like the people who worked hard to get this implemented are pretty happy a year later at how, you know — obviously there’s further to go — but they’re happy with how far they’ve come. Well, so, probably the only thing worse than not getting care covered that should be is losing your health coverage altogether, which brings us to the Medicaid unwinding, as states redetermine who’s still eligible for Medicaid for the first time since the start of the pandemic. Our podcast colleague Tami Luhby over at CNN had a story Friday that I still haven’t seen anywhere else. Apparently 12 states have put their disenrollments on pause, says Tami. But we don’t know which 12, according to the KFF disenrollment tracker. As of Wednesday, July 26, at least 3.7 million people have been disenrolled from the 37 states that are reporting publicly, nearly three-quarters of those people for, quote, “procedural reasons,” meaning those people might still be eligible but for some reason didn’t complete the renewal process. The dozen states on pause are apparently ones that HHS [the Department of Health and Human Services] thinks are not following the renewal requirements and presumably ones whose disenrollments are out of line. The Centers for Medicare & Medicaid Services, which is overseeing this, is not naming those states, but this points up exactly what a lot of people predicted would happen when states started looking at eligibility again, that a lot of people who were quite likely still eligible were simply going to lose their insurance altogether, right?
Edney: Yeah, it seemed like there was a lot of preparation in some ways to anticipating this. And then, yeah, obviously you had the states that were just raring to go and try to get people off the rolls. And yeah, it would be very interesting to know what those 12 are. I think Tami’s reporting was stellar and she did a really good job. But that’s, like, one piece of the puzzle we’re missing. And I know CMS said that they’re not naming them because they are working well with them to try to fix it.
Rovner: The one thing we obviously do know is that there are several states that are doing this faster than is required — in fact, faster than is recommended. And what we know is that the faster they do it, the more likely they are going to have people sort of fall between the cracks. The people who are determined to be no longer eligible for Medicaid are supposed to be guided to programs for which they are eligible. And presumably most of them, unless they have, you know, gotten a really great job or hit the lottery, will still be eligible at least for subsidies under the Affordable Care Act. And they’re supposed to be guided to those programs. And it’s not clear yet whether that’s happening, although I know there are an awful lot of people who are watching this pretty closely. There were over 90 million people on Medicaid by the end of the pandemic, by the point at which states no longer had to keep people on. That’s a lot more people than Medicaid normally has. It’s usually more around 70 or even 80 million. So there’s excess people. And the question is what’s going to happen to those people and whether they’re going to have some sort of health insurance. And I guess it’s going to be more than a couple of months before we know that. Yes, Joanne.
Kenen: I think that it’s important to remember that there’s no open enrollment season for Medicaid the way there is for the ACA, so that if you’re disenrolled and you get sick and you go to a doctor or a hospital, they can requalify you and you can get it again. The problem is people who think that they’re disenrolled or are told that they’re disenrolled may not realize. They may not go to the doctor because they think they can’t afford it. They may not understand there’s a public education campaign there, too, that I haven’t seen. You know, if you get community health clinics, hospitals, they can do Medicare, Medicaid certification. But it’s dangerous, right? If you think, oh, I’m going to get a bill I can’t afford and I’m just going to see if I can tough this out, that’s not the way to take care of your health. So there’s that additional conundrum. And then, you know, I think that HHS can be flexible on special enrollment periods for those who are not Medicaid-eligible and are ACA-eligible, but most of them are still Medicaid-eligible.
Rovner: If you get kicked off of Medicaid, you get an automatic special enrollment for the ACA anyway.
Kenen: But not forever. If the issue is it’s in a language you don’t speak or at an address you don’t live in, or you just threw it out because you didn’t understand what it was — there is institutional failures in the health care system, and then there’s people have different addresses in three years, particularly poor people; they move around. There’s a communication gap. You know, I talked to a health care system a while ago in Indiana, a safety net, that was going through electronic health records and contacting people. And yet that’s Indiana and they, you know, I think it was Tami who pointed out a few weeks ago on the podcast, Indiana is not doing great, in spite of, you know, really more of a concerted effort than other states or at least other health systems, not that I talk to every single health system in the country. I was really impressed with how proactive they were being. And still people are falling, not just through the cracks. I mean, there’s just tons of cracks. It’s like, you know, this whole landscape of cracks.
Rovner: I think everybody knew this was going to be a big undertaking. And obviously the states that are trying to do it with some care are having problems because it’s a big undertaking. And the states that are doing it with a little bit less care are throwing a lot more people off of their health insurance. And we will continue to follow this. So it is the end of July. I’m still not sure how that happened.
Kenen: ’Cause after June, Julie.
Rovner: Yes. Thank you. July is often when committees in Congress rush to mark up bills that they hope to get to the floor and possibly to the president in that brief period when lawmakers return from the August recess before they go out for the year, usually around Thanksgiving. This year is obviously no exception. While Sen. Bernie Sanders [(I-Vt.)] at the Health, Education, Labor and Pensions Committee has delayed consideration of that primary care-community health center bill that we talked about last week until September, after Republicans rebelled against what was supposed to have been a bipartisan bill, committee action on pharmacy benefit managers and other Medicare issues did take place yesterday in the Senate Finance Committee and the House Ways and Means Committee. Sarah, you’re following this, right? What’s happening? And I mean, so we’ve now had basically all four of the committees that have some kind of jurisdiction over this who’ve acted. Is something going to happen on PBM regulation this year?
Karlin-Smith: Actually, five committees have acted because the House Ed[ucation] and Workforce Committee has also acted on the topic. So there’s a lot of committees with a stake in this. I think there’s certainly set up for something for the fall, end of the year, to happen in the pharmacy benefit manager space. And there’s a decent amount of bipartisanship around the issue, depending on exactly which committee you’re looking at. But even if the policies that haven’t gotten through haven’t been bipartisan, I think there’s general bipartisan interest among all the committees of tackling the issue. The question is how meaningful, I guess, the policies that we get done are. Right now it looks like what we’re going to end up with is some kind of transparency measure. It reminded me a little bit of our discussion of the mental health stuff [President Joe] Biden is doing going forward. Essentially what it’s going to end up doing is get the government a lot of detailed data about how PBMs operate, how this vertical integration of PBMs — so there’s a lot of common ownership between PBMs, health insurance plans, pharmacies and so forth — may be impacting the cost of our health care and perhaps in a negative way. And then from that point, the idea would be that later Congress could go back and actually do the sort of policy reforms that might be needed. So I know there are some people that are super excited about this transparency because it is such an opaque industry. But at the same point, you can’t kind of go to your constituents and say, “We’ve changed something,” right away or, you know, “We’re going to save you a ton of money with this kind of legislation.”
Rovner: You could tell how worried the PBMs are by how much advertising you see, if you still watch TV that has advertising, which I do, because I watch cable news. I mean, the PBMs are clearly anxious about what Congress might do. And given the fact that, as you point out and as we’ve been saying for years, drug prices are a very bipartisan issue — and it is kind of surprising, like mental health, it’s bipartisan, and they still haven’t been able to push this as far as I think both Democrats and Republicans would like for it to go. Is there anything in these bills that surprised you, that goes further than you expected or less far than expected?
Karlin-Smith: There’s been efforts to sort of delink PBM compensation from rebates. And in the past, when Congress has tried to look into doing this, it’s ended up being extremely costly to the government. And they figured out in this set of policies sort of how to do this without those costs, which is basically, they’re making sure that the PBMs don’t have this perverse incentive to make money off of higher-priced drugs. However, the health plans are still going to be able to do that. So it’s not clear how much of a benefit this will really be, because at this point, the health plans and the PBMs are essentially one and the same. They have the same ownership. But, you know, I do think there has been some kind of creativity and thoughtfulness on Congress’ part of, OK, how do we tackle this without also actually increasing how much the government spends? Because the government helps support a lot of the premiums in these health insurance programs.
Rovner: Yeah. So the government has quite a quite a financial stake in how this all turns out. All right. Well, we will definitely watch that space closely. Let us move on to abortion. In addition to it being markup season for bills like PBMs, it’s also appropriations season on Capitol Hill, with the Sept. 30 deadline looming for a completion of the 12 annual spending bills. Otherwise, large parts of the government shut down, which we have seen before in recent years. And even though Democrats and Republicans thought they had a spending detente with the approval earlier this spring of legislation to lift the nation’s debt ceiling, Republicans in the House have other ideas; they not only want to cut spending even further than the levels agreed to in the debt ceiling bill, but they want to add abortion and other social policy riders to a long list of spending bills, including not just the one for the Department of Health and Human Services but the one for the Food and Drug Administration, which is in the agriculture appropriations, for reasons I’ve never quite determined; the financial services bill, which includes funding for abortion in the federal health insurance plan for government workers; and the spending bill for Washington, D.C., which wants to use its own taxpayer money for abortion, and Congress has been making that illegal pretty much for decades. In addition to abortion bans, conservatives want riders to ban gender-affirming care and even bar the FDA from banning menthol cigarettes. So it’s not just abortion. It’s literally a long list of social issues. Now, this is nothing new. A half a dozen spending bills have carried a Hyde [Amendment] type of abortion ban language for decades, as neither Republicans nor Democrats have had the votes to either expand or take away the existing restrictions. On the other hand, these conservatives pushing all these new riders don’t seem to care if the government shuts down if these bills pass. And that’s something new, right?
Kenen: Over abortion it’s something new, but they haven’t cared. I mean, they’ve shut down the government before.
Rovner: That’s true. The last time was over Obamacare.
Kenen: Right. And, which, the great irony is the one thing they — when they shut down the government because Obamacare was mandatory, not just discretionary funding, Obamacare went ahead anyway. So, I mean, minor details, but I think this is probably going to be an annual battle from now on. It depends how hard they fight for how long. And with some of these very conservative, ultra-conservative lawmakers, we’ve seen them dig in on abortion, on other issues like the defense appointees. So I think it’s going to be a messy October.
Rovner: Yeah, I went back and pulled some of my old clips. In the early 1990s I used to literally keep a spreadsheet, and I think that’s before we had Excel, of which bill, which of the appropriations bills had abortion language and what the status was of the fights, because they were the same fights year after year after year. And as I said, they kind of reached a rapprochement at one point, or not even a rapprochement — neither side could move what was already there. At some point, they kind of stopped trying, although we have seen liberals the last few years try to make a run at the actual, the original Hyde Amendment that bans federal funding for most abortions — that’s in the HHS bill — and unsuccessfully. They have not had the votes to do that. Presumably, Republicans don’t have the votes now to get any of these — at least certainly not in the Senate — to get any of these new riders in. But as we point out, they could definitely keep the government closed for a while over it. I mean, in the Clinton administration, President [Bill] Clinton actually had to swallow a bunch of new riders because either it was that or keep the government closed. So that’s kind of how they’ve gotten in there, is that one side has sort of pushed the other to the brink. You know, everybody seems to assume at this point that we are cruising towards a shutdown on Oct. 1. Does anybody think that we’re not?
Kenen: I mean, I’m not on the Hill anymore, but I certainly expect a shutdown. I don’t know how long it lasts or how you resolve it. And I — even more certain we’ll have one next year, which, the same issues will be hot buttons five weeks before the elections. So whatever happens this year is likely to be even more intense next year, although, you know, next year’s far away and the news cycle’s about seven seconds. So, you know, I think this could be an annual fight and for some time to come, and some years will be more intense than others. And you can create a deal about something else. And, you know, the House moderates are — there are not many moderates — but they’re sort of more traditional conservatives. And there’s a split in the Republican Party in the House, and we don’t know who’s going to fold when, and we don’t — we haven’t had this kind of a showdown. So we don’t really know how long the House will hold out, because some of the more moderate lawmakers who are — they’re all up for reelection next year. I mean, some of them don’t agree. Some of are not as all or nothing on abortion as the —
Rovner: Well, there are what, a dozen and a half Republicans who are in districts that President Biden won who do not want to vote on any of these things and have made it fairly clear to their leadership that they do not want to vote on any of these things. But obviously the conservatives do.
Kenen: And they’ve been public about that. They’ve said it. I mean, we’re not guessing. Some of them spoke up and said, you know, leave it to the states. And that’s what the court decided. And they don’t want to nationalize this even further than it’s nationalized. And I think, you know, when you have the Freedom Caucus taking out Marjorie Taylor Greene, I mean, I have no idea what’s next.
Rovner: Yeah, things are odd. Well, I want to mention one more abortion story this week that I read in the newsletter “Abortion, Every Day,” by Jessica Valenti. And shoutout here: If you’re interested in this issue and you don’t subscribe, you’re missing out. I will include the link in the show notes. The story’s about Texas and the exam to become a board-certified obstetrician-gynecologist. The board that conducts the exam is based in Dallas and has been for decades, and Texas is traditionally where this test has been administered. During the pandemic, the exam was given virtually because nothing was really in person. But this year, if a doctor wants to become board-certified, he or she will have to travel to Texas this fall. And a lot of OB-GYNs don’t want to do that, for fairly obvious reasons, like they are afraid of getting arrested and sent to prison because of Texas’ extreme anti-abortion laws. And yikes, really, this does not seem to be an insignificant legal risk here for doctors who have been performing abortions in other states. This is quite the dilemma, isn’t it?
Karlin-Smith: Well, the other thing I thought was interesting about — read part of that piece — is just, she was pointing out that you might not just want to advertise in a state where a lot of people are anti-abortion that all of these people who perform abortions are all going to be at the same place at the same time. So it’s not just that they’re going to be in Texas. Like, if anybody wants to go after them, they know exactly where they are. So it can create, if nothing else, just like an opportunity for big demonstrations or interactions that might disrupt kind of the normal flow of the exam-taking.
Kenen: Or violence. Most people who are anti-abortion are obviously not violent, but we have seen political violence in this country before. And you just need one person, which, you know, we seem to have plenty of people who are willing to shoot at other people. I thought it was an excellent piece. I mean, I had not come across that before until you sent it around, and there’s a solution — you know, like, if you did it virtually before — and I wasn’t clear, or maybe I just didn’t pay attention: Was this certification or also recertification?
Rovner: No, this was just certification. Recertification’s separate. So these are these are young doctors who want to become board-certified for the first time.
Kenen: But the recertification issues will be similar. And this is a yearly — I mean, I don’t see why they just don’t give people the option of doing it virtual.
Rovner: But we’ll see if they back down. But you know, I had the same thought that Sarah did. It’s like, great, let’s advertise that everybody’s going to be in one place at one time, you know, taking this exam. Well, we’ll see how that one plays out. Well, finally this week, building on last week’s discussion on health and climate change and on drug shortages, a tornado in Rocky Mount, North Carolina, seriously damaged a giant Pfizer drug storage facility, potentially worsening several different drug shortages. Sarah, I remember when the hurricane in Puerto Rico seemed to light a fire under the FDA and the drug industry about the dangers of manufacturing being too centralized in one place. Now we have to worry about storage, too? Are we going to end up, like, burying everything underground in Fort Knox?
Karlin-Smith: I think there’s been a focus even since before [Hurricane] Maria, but that certainly brought up that there’s a lack of redundancy in U.S. medical supply chains and, really, global supply chains. It’s not so much that they need to be buried, you know, that we need bunkers. It’s just that — Pfizer had to revise the numbers, but I think the correct number was that that facility produces about 8% of the sterile kind of injectables used in the U.S. health system, 25% of all Pfizer’s — it’s more like each company or the different plants that produce these drugs, it needs to be done in more places so that if you have these severe weather events in one part of the country, there’s another facility that’s also producing these drugs or has storage. So I don’t know that these solutions need to be as extreme as you brought up. But I think the problem has been that when solutions to drug shortages have come up in Congress, they tend to focus on FDA authorities or things that kind of nibble around the edges of this issue, and no one’s ever really been able to address some of the underlying economic tensions here and the incentives that these companies have to invest in redundancy, invest in better manufacturing quality, and so forth. Because at the end of the day these are often some of the oldest and cheapest drugs we have, but they’re not necessarily actually the easiest to produce. While oftentimes we’re talking about very expensive, high-cost drugs here, this may be a case where we have to think about whether we’ve let the prices drop too low and that’s sort of keeping a market that works if everything’s going perfectly well but then leads to these shortages and other problems in health care.
Rovner: Yeah, the whole just-in-time supply chain. Well, before we leave this, Anna, since you’re our expert on this, particularly international manufacturing, I mean, has sort of what’s been happening domestically lit a fire under anybody who’s also worried about some of these, you know, overseas plants not living up to their safety requirements?
Edney: Well, I think there are these scary things happen like a tornado or hurricane and everybody is kind of suddenly paying attention. But I think that the decision-makers in the White House or on Capitol Hill have been paying attention a little bit longer. We’ve seen these cancer — I mean, for a long time not getting anything done, as Sarah mentioned — but recently, it’s sort of I think the initial spark there was these cancer drug shortages that, you know, people not being able to get their chemo. And that was from an overseas factory; that was from a factory in India that had a lot of issues, including shredding all of their quality testing documents and throwing them in a truck, trying to get it out of there before the FDA inspectors could even see it.
Kenen: That’s always very reassuring.
Edney: It is. Yeah. It makes you feel really good. And one bag did not make it out of the plant in time, so they just threw acid on it instead of letting FDA inspectors look at it. So it’s definitely building in this tornado. And what might come out of it if there are a lot of shortages, I haven’t seen huge concern yet from the FDA on that front. But I think that it’s something that just keeps happening. It’s not letting up. And, you know, my colleagues did a really good story yesterday. There’s a shortage of a certain type of penicillin you give to pregnant people who have syphilis. If you pass syphilis on to your baby, the baby can die or be born with a lot of issues — it’s not like if an adult gets syphilis — and they’re having to ration it, and adults aren’t getting treated fully for syphilis because the babies need it more so, and so this is like a steady march that just keeps going on. And there’s so many issues with the industry, sort of how it’s set up, what Sarah was talking about, that we haven’t seen anybody really be able to touch yet.
Rovner: We will continue to stay on top of it, even if nobody else does. Well, that is this week’s news. Now we will play my interview with KFF’s Céline Gounder, and then we will come back and do our extra credit. I am pleased to welcome back to the podcast Dr. Céline Gounder, KFF senior fellow and editor-at-large for public health, as well as an infectious disease specialist and epidemiologist in New York and elsewhere. Céline is here today to tell us about the second season of her podcast, “Epidemic,” which tells the story of the successful effort to eradicate smallpox and explores whether public health can accomplish such big things ever again. Céline, thank you for joining us.
Céline Gounder: It’s great to be here, Julie.
Rovner: So how did you learn about the last steps in the journey to end smallpox, and why did you think this was a story worth telling broadly now?
Gounder: Well, this is something I actually studied back when I was in college in the ’90s, and I did my senior thesis in college on polio eradication, and this was in the late ’90s, and we have yet to eradicate polio, which goes to show you how difficult it is to eradicate an infectious disease. And in the course of doing that research, I was an intern at the World Health Organization for a summer and then continued to do research on it during my senior year. I also learned a lot about smallpox eradication. I got to meet a lot of the old leaders of that effort, folks like D.A. Henderson and Ciro de Quadros. And fast-forward to the present day: I think coming out of covid we’re unfortunately not learning what at least I think are the lessons of that pandemic. And I think sometimes it’s easier to go back in time in history, and that helps to depoliticize things, when people’s emotions are not running as high about a particular topic. And my thought was to go back and look at smallpox: What are the lessons from that effort, a successful effort, and also to make sure to get that history while we still have some of those leaders with us today.
Rovner: Yes, you’re singing my song here. I noticed the first episode is called “The Goddess of Smallpox.” Is there really a goddess of smallpox?
Gounder: There is: Shitala Mata. And the point of this episode was really twofold. One was to communicate the importance of understanding local culture and beliefs, not to dismiss these as superstitions, but really as ways of adapting to what was, in this case, a very centuries-long reality of living with smallpox. And the way people thought about it was that in some ways it was a curse, but in some ways it was also a blessing. And understanding that dichotomy is also important, whether it’s with smallpox or other infectious diseases. It’s important to understand that when you’re trying to communicate about social and public health interventions.
Rovner: Yeah, because I think people don’t understand that public health is so unique to each place. I feel like in the last 50 years, even through HIV and other infectious diseases, the industrialized world still hasn’t learned very well how to deal with developing countries in terms of cultural sensitivity and the need for local trust. Why is this a lesson that governments keep having to relearn?
Gounder: Well, I would argue we don’t even do it well in our own country. And I think it’s because we think of health in terms of health care, not public health, in the United States. And that also implies a very biomedical approach to health issues. And I think the mindset here is very much, oh, well, once you have the biomedical tools — the vaccines, the diagnostics, the drugs — problem solved. And that’s not really solving the problem in a pandemic, where much of your challenge is really social and political and economic and cultural. And so if you don’t think about it in those terms, you’re really going to have a flat-footed response.
Rovner: So what should we have learned from the smallpox eradication effort that might have helped us deal with covid or might help us in the future deal with the next pandemic?
Gounder: Well, I think one side of this is really understanding what the local culture was, spending time with people in community to build trust. I think we came around to understanding it in part, in some ways, in some populations, in some geographies, but unfortunately, I think it was very much in the crisis and not necessarily a long-term concerted effort to do this. And that I think is concerning because we will face other epidemics and pandemics in the future. So, you know, how do you lose trust? How do you build trust? I think that’s a really key piece. Another big one is dreaming big. And Dr. Bill Foege — he was one of the leaders of smallpox eradication, went on to be the director of the CDC [Centers for Disease Control and Prevention] under President [Jimmy] Carter — one of the pieces of advice he’s given to me as a mentor over the years is you’ve got to be almost foolishly optimistic about getting things done, and don’t listen to the cynics and pessimists. Of course, you want to be pragmatic and understand what will or won’t work, but to take on such huge endeavors as eradicating smallpox, you do have to be very optimistic and remind yourself every day that this is something you can do if you put your mind to it.
Rovner: I noticed, at least in the first couple of episodes that I’ve listened to, the media doesn’t come out of this looking particularly good. You’re both a journalist and a medical expert. What advice do you have for journalists trying to cover big public health stories like this, like covid, like things that are really important in how you communicate this to the public?
Gounder: Well, I think one is try to be hyperlocal in at least some of your reporting. I think one mistake during the pandemic was having this very top-down perspective of “here is what the CDC says” or “here is what the FDA says” or whomever in D.C. is saying, and that doesn’t really resonate with people. They want to see their own experiences reflected in the reporting and they want to see people from their community, people they trust. And so I think that is something that we should do better at. And unfortunately, we’re also somewhat hampered in doing so because there’s been a real collapse of local journalism in most of the country. So it really does fall to places like KFF Health News, for example, to try to do some of that important reporting.
Rovner: We will all keep at it. Céline Gounder, thank you so much for joining us. You can find Season 2 of “Epidemic,” called “Eradicating Smallpox,” wherever you get your podcasts.
Gounder: Thanks, Julie.
Rovner: OK, we’re back. It’s time for our extra credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Sarah, why don’t you go first this week?
Karlin-Smith: Sure. I took a look at a piece from Brenda Goodman at CNN called “They Took Blockbuster Drugs for Weight Loss and Diabetes. Now Their Stomachs Are Paralyzed,” and it’s a really good deep dive into — people probably have heard of Ozempic, Wegovy — these what are called GLP-1 drugs that have been used for diabetes. And we’ve realized in higher doses even for people without diabetes, they often are very helpful at losing weight, that that’s partially because they slow the passage of food through your stomach. And there are questions about whether for some people that is leading to stomach paralysis or other extreme side effects. And I think it’s a really interesting deep dive into the complicated world of figuring out, Is this caused by the drug? Is it caused by other conditions that people have? And then how should you counsel people about whether they should receive the drugs and the benefits outweighing the risks? So I think it’s like just a good thing for people to read when you sort of hear all this hype about a product and how great they must be, that it’s always a little bit more complicated than that. And it also brought up another aspect of it, which is how these drugs may impact people who are going to get surgery and anesthesia and just the importance of communicating this to your doctor so they know how to appropriately handle the drugs. Because if you still have food content in your stomach during a surgery, that can be extremely dangerous. And I thought just that aspect alone of this story is really interesting, because they talk about people maybe not wanting to even let their doctors know they’re on these drugs because of stigma surrounding weight loss. And just again, once you get a new medicine that might end up being taken by a lot of people, the complications or, you know, there’s the dynamics of how it impacts other parts of medicine, and we need to adjust.
Rovner: Yeah. And I think the other thing is, you know, we know these drugs are safe because people with diabetes have been taking them for, what, six or seven years. But inevitably, anytime you get a drug that lots more people take, then you start to see the outlier side effects, which, if it’s a lot of people, can affect a lot of people. Joanne.
Kenen: I have a piece from FERN, which is the Food & Environment Reporting Network and in partnership with Yale Environ 360, and it’s by Gabriel Popkin. And it’s called “Can Biden’s Climate-Smart Agriculture Program Live Up to the Hype?” And I knew nothing about smart agriculture, which is why I found this so interesting. So, this is an intersection of climate change and food, which is obviously also a factor in climate change. And there’s a lot of money from the Biden administration for farmers to use new techniques that are more green-friendly because as we all know, you know, beef and dairy, things that we thought were just good for us — maybe not beef so much — but, like, they’re really not so good for the planet we live on. So can you do things like, instead of using fertilizer, plant cover crops in the offseason? I mean, there’s a whole list of things that — none of us are farmers, but there’s also questions about are they going to work? Is it greenwashing? Is it stuff that will work but not in the time frame that this program is funding? How much of it’s going to go to big agribusiness, and how much of it is going to go to small farmers? So it’s one hand, it’s another. You know, there’s a lot of low-tech practices. We’re going to have to do absolutely everything we can on climate. We’re going to have to use a variety of — you know, very large toolkit. So it was interesting to me reading about these things that you can do that make agriculture, you know, still grow our food without hurting the planet, but also a lot of questions about, you know, is this really a solution or not? But, you know, I didn’t know anything about it. So it was a very interesting read.
Rovner: And boy, you think the drug companies are influential on Capitol Hill. Try going with big agriculture. Anna.
Edney: I’m going to toot my own horn for a second here —
Rovner: Please.
Edney: — and do one of my mini-investigations that I did, “Mineral Sunscreens Have Potential Hidden Dangers, Too.” So there’s been a lot of talk: Use mineral sunscreen to save the environment or, you know, for your own health potentially. But they’re white, they’re very thick. And, you know, people don’t want to look quite that ghostly. So what’s been happening lately is they’ve been getting better. But what I found out is a lot of that is due to a chemical — that is what people are trying to move away from, is chemical sunscreens — but the sunscreen-makers are using this chemical called butyloctyl salicylate. And you can read the article for kind of the issues with it. I guess the main one I would point out is, you know, I talked to the Environmental Working Group because they do these verifications of sunscreens based on their look at how good are they for your health, and a couple of their mineral ones had this ingredient in it. So when I asked them about it, they said, Oh, whoops; like, we do actually need to revisit this because it is a chemical that is not recommended for children under 4 to be using on their bodies. So there’s other issues with it, too — just the question of whether you’re really being reef-safe if it’s in there, and other things as well.
Rovner: It is hard to be safe and be good to the planet. My story this week is by Amy Littlefield of The Nation magazine, and it’s called “The Anti-Abortion Movement Gets a Dose of Post-Roe Reality.” It’s about her visit to the annual conference of the National Right to Life Committee, which for decades was the nation’s leading anti-abortion organization, although it’s been eclipsed by some others more recently. The story includes a couple of eye-opening observations, including that the anti-abortion movement is surprised that all those bans didn’t actually reduce the number of abortions by very much. As we know, women who are looking for abortions normally will find a way to get them, either in state or out of state or underground or whatever. And we also learned in this story that some in the movement are willing to allow rape and incest exceptions in abortion bills, which they have traditionally opposed, because they want to use those as sweeteners for bills that would make it easier to enforce bans, stronger bans, things like the idea in Texas of allowing individual citizens to use civil lawsuits and forbidding local prosecutors from declining to prosecute abortion cases. We’re seeing that in some sort of blue cities in red states. It’s a really interesting read and I really recommend it. OK. That is our show for this week. As always, if you enjoyed the podcast, you can subscribe where ever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m @jrovner, and I’m on Bluesky and Threads. Joanne.
Kenen: @joannekenen1 at Threads.
Rovner: Sarah.
Karlin-Smith: I’m @SarahKarlin or @sarah.karlinsmith, depending on which of these many social media platforms you’re looking at, though.
Rovner: Anna.
Edney: @annaedney on Twitter and @anna_edneyreports on Threads.
Rovner: You can always find us here next week where we will always be in your podcast feed. Until then, be healthy.
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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.
2023 will likely be remembered as the summer Arizona sizzled, Vermont got swamped, and nearly the entire Eastern Seaboard, along with huge swaths of the Midwest, choked on wildfire smoke from Canada. Still, none of that has been enough to prompt policymakers in Washington to act on climate issues.
Meanwhile, at a public court hearing, a group of women in Texas took the stand to share wrenching stories about their inability to get care for pregnancy complications, even though they should have been exempt from restrictions under the state’s strict abortion ban.
This week’s panelists are Julie Rovner of KFF Health News, Rachel Cohrs of Stat, Shefali Luthra of The 19th, and Alice Miranda Ollstein of Politico.
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Rachel Cohrs
Stat News
Shefali Luthra
The 19th
Alice Miranda Ollstein
Politico
Among the takeaways from this week’s episode:
- Tensions over abortion access between the medical and legal communities are coming to the fore in the courts, as doctors beg for clarification about bans on the procedure — and conservative state officials argue that the law is clear enough. The risk of being hauled into court and forced to defend even medically justified care could be enough to discourage a doctor from providing abortion care.
- Conservative states are targeting a Biden administration effort to update federal privacy protections, which would make it more difficult for law enforcement to obtain information about individuals who travel outside a state where abortion is restricted for the procedure. Patient privacy is also under scrutiny in Nebraska, where a case involving a terminated pregnancy is further illuminating how willing tech companies like Meta are to share user data with authorities.
- And religious freedom laws are being cited in arguments challenging abortion bans, with plaintiffs alleging the restrictions infringe on their religious rights. The argument appears to have legs, as early challenges are being permitted to move forward in the courts.
- On Capitol Hill, key Senate Democrats are holding up the confirmation process of President Joe Biden’s nominee as director of the National Institutes of Health to press for stronger drug pricing reforms and an end to the revolving-door practice of government officials going to work for private industry.
- And shortages of key cancer drugs are intensifying concerns about drug supplies and drawing attention in Congress. But Republicans are skeptical about increasing the FDA’s authority — and supply-chain issues just aren’t that politically compelling.
Also this week, Rovner interviews Meena Seshamani, director of the Center for Medicare at the Centers for Medicare & Medicaid Services at the Department of Health and Human Services.
Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: Los Angeles Times’ “Opinion: Crushing Medical Debt Is Turning Americans Against Their Doctors,” by KFF Health News’ Noam N. Levey.
Rachel Cohrs: The New York Times’ “They Lost Their Legs. Doctors and Health Care Giants Profited,” by Katie Thomas, Jessica Silver-Greenberg, and Robert Gebeloff.
Alice Miranda Ollstein: The Atlantic’s “What Happened When Oregon Decriminalized Hard Drugs,” by Jim Hinch.
Shefali Luthra: KFF Health News’ “Medical Exiles: Families Flee States Amid Crackdown on Transgender Care,” by Bram Sable-Smith, Daniel Chang, Jazmin Orozco Rodriguez, and Sandy West.
Also mentioned in this week’s episode:
- Stat’s “From Rapid Cooling Body Bags to ‘Prescriptions’ for AC, Doctors Prepare for a Future of Extreme Heat,” by Karen Pennar.
- Politico’s “The Sleeper Legal Strategy That Could Topple Abortion Bans,” by Alice Miranda Ollstein.
click to open the transcript
Transcript: Let’s Talk About the Weather
KFF Health News’ ‘What the Health?’Episode Title: Let’s Talk About the WeatherEpisode Number: 306Published: July 20, 2023
[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]
Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, July 20, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Alice Miranda Ollstein, of Politico.
Alice Miranda Ollstein: Hello.
Rovner: Rachel Cohrs, of Stat News.
Rachel Cohrs: Hi, everybody.
Rovner: And Shefali Luthra of The 19th.
Shefali Luthra: Hello.
Rovner: Later in this episode we’ll have my interview with Meena Seshamani, director of the Center for Medicare at the Center for Medicare & Medicaid Services at the Department of Health and Human Services. She has an update on drug price negotiations, Medicare Advantage payments, and more. But first, this week’s news. So let’s talk about the weather. Seriously, this summer of intense heat domes in the South and Southwest, flash floods in the East, and toxic air from Canadian wildfires almost everywhere below the border has advertised the dangers of climate change in a way scientists and journalists and policymakers could only dream about. The big question, though, is whether it will make any difference to the people who can actually do something about it. I hasten to point out here that in D.C., it’s normal — hot and humid for July, but nothing particularly out of the ordinary, especially compared to a lot of the rest of the country. Is anybody seeing anybody on the Hill who seems at the least alarmed by what’s going on?
Ollstein: Not other than those who normally speak out about these issues. You’re not seeing minds changed by this, even as the reports coming out, especially of the Southwest, are just devastating — I mean, especially for unhoused people, just dying. I was really interested in the story from Stat about doctors moving to start prescribing things to combat heat, like prescribing air conditioners, prescribing cooling packs and other things, really looking at heat as a medical issue and not just a feature of our lives that we have to deal with.
Rovner: Well, emergency rooms are full of patients. You can now burn yourself walking on the sidewalk in Arizona. You know, last summer was not a great summer for a lot of people, particularly in California and in western Canada. But this year, it’s like everywhere across the country, everybody’s having something that’s sort of, oh, a hundred-year something or a thousand-year something. And yet we just sort of continue on blithely.
Ollstein: And just quickly, what really hits me is how much of a vicious cycle it can create, because the more people use air conditioners, those give off heat and make the bigger situation worse. So making it better for yourself makes it worse for others. Same with driving. You know, the worse the weather is, the more people have to drive rather than bike or walk or take public transit. And so it gets into this vicious cycle that can make it worse for everyone and create these so-called heat islands in these cities.
Rovner: All right. Well, let us move on to a more familiar topic: abortion and reproductive health. In case you’re wondering why it’s hard to keep track of where abortion is legal, where it’s banned, and where it’s restricted, let’s talk about Iowa. When we last checked in, last week, state lawmakers had just passed a near-total ban after the state Supreme Court deadlocked over a previous ban and the Republican governor, Kim Reynolds, was poised to sign it. Then what happened?
Luthra: The governor signed the ban right as the hearing for the ban concluded in which Planned Parenthood and another abortion clinic in the state sued, arguing, right, that this is the exact same as the law that was just struck down and therefore should be struck down again. And this judge said that he wouldn’t rush to his ruling. He wanted to, you know, give it the time that it deserved so he wouldn’t be saying anything on Friday, which meant as soon as the law was signed, it took effect. It was in effect for maybe a little over 72 hours, essentially through the weekend. And then on Monday, the judge came and issued a ruling blocking the law. And even that is temporary, right? It only lasts as long as this case is proceeding. And one of the reasons Republicans came back and passed this ban is they are hopeful that something has changed and that this time around the state Supreme Court will let the six-week ban in Iowa stand, which really just would have quite significant implications for the Midwest, where it’s been kind of slower to restrict abortion than the South has been because of the role the courts have played in Ohio, in Iowa, blocking abortion bans, and we could very soon see restrictions in Iowa, in Indiana, potentially in Ohio, depending on how the election later this year goes. And it will look like a very different picture than it did even six months ago.
Rovner: And for the moment, abortion is legal in Iowa, right?
Luthra: Correct.
Rovner: Up to 20 weeks?
Luthra: Up to 20, 22, depending on how you count.
Rovner: But as you say, that could change any day. And it has changed from day to day as we’ve gone on. Well, if that’s not confusing enough, there are a couple of lawsuits that went to court in Texas and Missouri, and neither of them is actually challenging an abortion ban. In Texas, women who were pregnant and unable to get timely care for complications are suing to clarify the state’s abortion ban so patients don’t have to literally wait until they are dying to be treated. And in Missouri, there’s a fight between two state officials over how to describe what a proposed state ballot measure would do, honestly. So what’s the status of those two suits? Let’s start with Texas. That was quite a hearing yesterday.
Luthra: It is really devastating to watch. And the hearing continues today, Thursday. And we are hearing from these women who wanted to have their pregnancies, developed complications where they knew that the fetus would not be viable, could not get care in the state. One of them who came to the State of the Union earlier this year, she had to wait until she was septic before she could get care. Another woman traveled out of state. Another one had to give birth to a baby that died four hours after being born, and she knew that this baby wouldn’t live. And it’s really striking to watch just how obviously difficult it is for these women to relive this thing that happened to them, clearly one of the worst things in their lives, maybe the worst thing. And the state’s arguments are very interesting, too, because they appear to be trying to suggest that it is actually not that the law is unclear, but that doctors are just not doing their jobs and they should do, you know, the hard work of medicine by understanding what exceptions mean and interpreting laws that are always supposed to be a little ambiguous.
Ollstein: So when states were debating abortion bans and really Republicans were tying themselves in knots over this question of exemptions — How should the exemptions be worded? Should there be any exemptions at all? Who should they apply to? — a lot of folks on the left were yelling at the time that that’s the wrong conversation, that exemptions are unworkable; even if you say on paper that people can get an abortion in a medical emergency, it won’t work in practice. And this is really fodder for that argument. This is that argument playing out in real life, where there is a medical exemption on the books, and yet all of these women were not able to get the care they needed, and some have suffered permanent or somewhat permanent repercussions to their health and fertility going forward. As more states debate their own laws, and some states with bans have even tried to go back and clarify the exemptions and change them, I wonder how much this will impact those debates.
Rovner: Yeah, I mean, if you just say that doctors are being, you know, cowards basically by not providing this care, think of it from the doctor’s point of view, and now we see why hospital lawyers are getting involved. Even if there’s a legitimate medical reason, they could get dragged into court and have to pay tens or hundreds of thousands of dollars in legal fees just to prove that their medical judgment was correct. You can kind of see why doctors are a little bit reluctant to do that.
Ollstein: And just to stress, these laws were not written by doctors. These laws were written by politicians, and they include language that medical groups have pointed out doesn’t translate to the actual practice of medicine. Some of these bans’ exceptions’ language use terms like irreversible, and they’re like, “That’s not something we say in medicine. That doesn’t fit with our training. We don’t think in terms of that.” Also, terms like life-threatening: It’s like, OK, well, is it imminently life-threatening? And even then, what does that mean? How close does someone need to be to losing their life in order to act?
Rovner: And pregnancy itself is life-threatening.
Ollstein: Right. Or something could be life-threatening in a longer-term way, you know, down the road. Other conditions like diabetes or cancer could be life-threatening even if it won’t kill you today or tomorrow. So this is a real battle where medicine meets law.
Rovner: Well, in Missouri, it’s obviously not nearly as dramatic, but it’s also — you can see how this is playing out in a lot of these states. This is basically a fight between the state attorney general and the state auditor over how much an abortion ban might end up costing the state. They’re really sort of fighting this as hard as they can. It’s basically to make it either more or less attractive to voters, right?
Ollstein: It’s similar to some of the gambits we saw in Michigan to keep the measure off the ballot or put it on the ballot in a way that some would say would be misleading to voters. So I think you’re seeing this more and more in these states after so many states, including pretty conservative states, voted in favor of abortion rights last year. You know, the right is afraid of that continuing to happen, and so they’re looking at all of these technical ways — through the courts, through the legislatures, whatever means they can — to influence the process. And Democrats cry that this is antidemocratic, not giving people a say. Republicans claim that they’re preventing big-money outside groups from influencing the process. And I think this is going to be a huge battle. Missouri and Ohio are up next in terms of voting. And after that, you have Florida and Nevada and a bunch of other states in the queue. And so this is going to continue to be something we’re discussing for a while.
Luthra: And to flag the case in Ohio, what’s happening there, right, is the state is having voters vote onto whether to make it harder to pass constitutional amendments. There’s an election in August that would raise the threshold to two-thirds. And what we know from all of the evidence why they don’t typically have August referenda in Ohio is because the turnout is very, very low, and they are expecting that to be very low. And they’ve made it explicit that the reason they want to make it harder to pass constitutional amendments is, in fact, the concern around Ohio’s proposed abortion protection.
Rovner: Of course, that’s what they said about Kansas last year, that people wouldn’t vote because it was in the summer, so — but this is a little bit more obtuse. This is whether or not you’re going to change the standard for passing constitutional change that would enshrine abortion. So, yeah, clearly —
Luthra: It’s hard to get people excited about votes on voting.
Rovner: Yeah, exactly. An underlying theme for most of this year has been efforts by states that restrict or ban abortion to try to prevent or at least keep tabs on patients who leave the state to obtain a procedure where it is legal. Attorneys general in a dozen and a half states are now protesting a Biden administration effort to protect such information under HIPAA, the medical records privacy provisions of the Health Insurance Portability and Accountability Act. Alice, you’ve written about this. What would the HIPAA update do, and why do the red states oppose it?
Ollstein: The HIPAA update, which was proposed in April, and comment closed in June, and so we’re basically waiting for a final rule — at some point, you know, it can take a while — but it would make it harder for either law enforcement or state officials to obtain medical information about someone seeking an abortion, either out of state or in state under one of these exemptions. This would sort of beef up those protections and require a subpoena or some form of court order in order to get that data. And you have sort of an interesting pattern playing out, which you’ve seen just throughout the Biden administration, where the Biden administration hems and haws and takes an action related to abortion rights and the left says it’s not good enough and the right says it’s wild overreach and unconstitutional and they’re going to sue. And so that’s what I was documenting in my story.
Rovner: Is it 18 red states saying —
Ollstein: Nineteen, yes, yeah.
Rovner: Nineteen red states saying that this is going too far.
Ollstein: They say they want to be able to obtain that data to see if people are breaking the law.
Rovner: Well, Shefali, you wrote this week about sort of a related topic, whether states can use text or social media messages as evidence of criminal activity. That sounds kind of chilling.
Luthra: Yeah, and this is, I think, a really interesting question. We saw it in this case in Nebraska, where a sentencing for one of the defendants is happening today in fact. And I want to be careful in how I talk about this because it concerns a pregnancy that was terminated in April of 2022, before Roe was even overturned. But it sort of offered this test case, this preview for: If you do have law enforcement going after people who have broken a state’s abortion laws, how might they go about doing that? What statutes do they use to prosecute? And what information do they have access to? And the answer is potentially quite a lot. Organizations like Meta and Google are quite cooperative when it comes to government requests for user data. They are quite willing to give over history of message exchanges, history of your searches, or of, you know, where you were tracked on Google Maps. And the bigger question there is how likely are we to see individual prosecutors, individual states, going after patients and their families, their friends for breaking abortion laws? Right now, there’s been some hesitation to do that because the politics are so terrible. But if they do go in that direction, people’s internet user data is, in most states, unprotected. There is no federal law protecting, you know, your Facebook messages. And it could be quite a useful piece of information for people trying to build a case, which should raise concern for anyone trying to access care.
Rovner: Yeah, this is exactly why women were taking their period-tracking apps off of their phones, to worry about the protection of quite personal information. Well, finally this week on the abortion front, we have talked so, so much about how conservative Christians complain that various abortion and even birth control laws violate their religious beliefs. Well, now representatives of several other religions, including Judaism and even some of the more liberal branches of Christianity, say that abortion bans violate their right to practice their religion. This is going on in a bunch of different states. I think the first one we talked about was Florida, I think a year ago. Are any of these lawsuits going anywhere? Do we expect this to end up before the Supreme Court at some point?
Ollstein: So most of them are in state court, not federal. I mean, it’s always possible it could go to the Supreme Court. A couple of them are in federal court and a couple of them have already reached the appeals court level. But the experts I talked to for my story on this said this is mainly going to have an impact in state courts and how they interpret state constitutions. A lot of states have stronger language around religious protections than the federal Constitution, including some laws that pretty conservative state leaders passed in the last few years, and I doubt they expected that same language would be cited to defend abortion rights. But here we are. And yeah, a Missouri court recently ruled that the lawsuit can go forward, the religious challenge to the state’s abortion ban. It’s a coalition of a bunch of different faith leaders bringing that challenge. And in Indiana, they won a preliminary ruling on that case. And there are others pending in Kentucky, Florida, a bunch of other states. And so, yeah, I think this definitely has legs.
Rovner: Yeah, we’re all learning an awful lot about court procedure in lots of different states. Let us move to Capitol Hill, where Congress is in its annual July race to the August recess. Seriously, this is actually a month in which Congress typically does get a lot done. Maybe not so much this year. One perhaps unexpected holdup in the U.S. Senate is where the confirmation of Monica Bertagnolli, President Biden’s nominee to head the National Institutes of Health, is being held up not by a Republican but by two Democrats: health committee chair Bernie Sanders, another member of the committee, Elizabeth Warren. Rachel, what is going on with this?
Cohrs: Sen. Bernie Sanders has long wanted the Biden administration to be more aggressive on drug pricing. And there is one issue in particular that Sen. Sanders has wanted the NIH specifically to use to challenge drug companies’ patents or at least put some pricing protections in there for drugs that are developed using publicly funded research. And the laws that the NIH potentially could use to challenge these companies for high-priced medications have never been used in this way. And Sen. Sanders is using his bully pulpit and the main leverage he has, which is over nominations, to get the White House’s attention. And I think the White House’s position here is that they have done more than any administration in the past 20 years to lower drug prices.
Rovner: Which is true.
Cohrs: It is true. And — but Sen. Sanders still is not satisfied with that and wants to see commitments from the White House and from NIH to do more.
Rovner: And Sen. Elizabeth Warren.
Cohrs: Sen. Elizabeth Warren, yes, who my colleague Sarah Owermohle first reported had some concerns over the revolving door at NIH and wanted a commitment that the nominee wouldn’t go to lobby or work for a large pharmaceutical company for four years after leaving the position, and I don’t know that she’s agreed to that yet. So I don’t see where this resolves. It’s tough, because we’re looking so close to an election, and I think there are big questions about what breaks this logjam. But it certainly has slowed down what looked like a very smooth and noncontroversial nomination process.
Rovner: Yeah, I mean, obviously, you know, we’ve seen many, many times over the years nominations held up for other reasons — I mean, basically using them as leverage to get some policy aim. It’s more rare that you see it on the president’s own party but obviously, you know, not completely unprecedented. Certainly in this case we have a lot of things to be worked out there. Well, Sen. Sanders also seems to be threatening the reauthorization of one of his very pet programs, the bipartisanly popular community health centers. His staff this week put out a draft bill and announced a markup before sharing it with Republicans on the committee. Now Ranking Member Bill Cassidy, who also supports the community health centers program — almost everybody in Congress supports the community health centers program — Cassidy complains there’s no budget score, that the bill includes programs from outside the committee’s jurisdiction, and other details that can be very important. Is Sanders trying to make things partisan on purpose, or is this just sloppy staff work?
Cohrs: Honestly, I can’t answer that question for you, but I don’t think that it’s going to result in a productive outcome for the community health centers. And I think we have in recent years seen significant cooperation between the chair and ranking member, but with Lamar Alexander, with Richard Burr, with Patty Murray, you know, we have seen a lot civility on this committee in the recent past, and that appears to have ended. And I think Sen. Cassidy’s response that he hadn’t seen the legislation publicly was, I think, telling. We don’t usually see that kind of public fighting from a committee chair.
Rovner: He put out a press release.
Cohrs: Right, put out a press release. Yeah. This is not what we usually see in these committees. And it is true that Sen. Sanders’ bill is so much more money than I think is usually given to community health centers in this reauthorization process. I think it’s true that the bill that he dropped touches issues that would anger almost every other stakeholder in the health care system. And I don’t think Sen. Cassidy quite envisioned that. And he introduced his own bill that would have introduced —
Rovner: Cassidy introduced his own bill.
Cohrs: Yes, Sen. Cassidy introduced his own bill last week that would have continued on with what the House Energy and Commerce Committee had passed unanimously earlier this summer to give community health centers a more modest boost in funding for two years.
Rovner: And obviously, there’s some urgency to this because the authorization runs out at the end of September and now we’re in July and they’re going to go away for August. So this is obviously something else that we’re going to need to keep a fairly close eye on. Well, meanwhile, elsewhere, as in at the Senate Finance Committee, which oversees Medicare and Medicaid, we’re starting to see legislation to regulate PBMs — pharmacy benefit managers — or are we? Rachel, we’ve come at this several times this year. How close are we getting?
Cohrs: We’re getting closer. And I think that two key committees are really feeling the heat to get their proposals out there before the end of the year. The first, like you mentioned, was the Senate Finance Committee, which is planning a markup next week, right before senators leave for August recess. They’ve asked for feedback from CBO [the Congressional Budget Office] around the end of August recess so that they’ll be ready to go. But I think it’s no secret that their delay in marking anything up or introducing anything has slowed down this process. And in the House, I know the Ways and Means Committee is trying to put together their own proposal and find time for a markup, whereas the House Energy and Commerce Committee, which also has jurisdiction over many of these issues, is frustrated, because they got their bill introduced, they had all the full regular order of subcommittee and then full committee hearings and then markups, got this bill unanimously out of their committee, and now everyone’s kind of waiting around on these two committees with jurisdiction over the Medicare program to see what they’re going to put together before any larger package can be compiled.
Rovner: Well, you know things are heating up when you start seeing PBM ads all over cable news. So even if you don’t understand what the issue is, you know that it’s definitely in play on Capitol Hill. Well, while we’re on the subject of drug prices, we have another lawsuit trying to block Medicare’s drug price negotiation, this one filed by Johnson & Johnson. Why so many? Wouldn’t these drug companies have more clout if they got together on one big suit, or is there some strategy here to spread it out and hope somebody finds a sympathetic judge?
Ollstein: Yes, I think the latter is exactly what they’re doing, because if they were to all kind of band together, then it would be putting all their eggs in one basket. And this way we see most of the companies have filed in different jurisdictions. I think Johnson & Johnson did file in the same court as Bristol Myers Squibb did, so I think it’s not a perfect trend. But generally what we are seeing is that the trade groups like the [U.S.] Chamber of Commerce and PhRMA [the Pharmaceutical Research and Manufacturers of America] kind of have their own arguments that they’re making in different venues. The drug manufacturers themselves have their own arguments that they’re making in their own venues, and they’re spreading out across the country in some typically more liberal courts and circuits and some more conservative. But I think that it’s important to note that the Chamber of Commerce so far is the only one that’s asked for a preliminary injunction, in Ohio. That is kind of the motion that, if it’s approved, could potentially put a stop to this program even beginning to go into effect. So they’ve asked for that by Oct. 1.
Rovner: And remember, I guess we’re supposed to see the first 10 drugs from negotiation in September, right?
Cohrs: By Sept. 1, yes.
Rovner: By Sept. 1.
Cohrs: Pretty imminently here.
Rovner: Also happening soon. Well, before we stop with the news this week, I do want to talk briefly about drug shortages. This has come up from time to time, both before and during the pandemic, obviously, when we had supply chain issues. But it seems like something new is happening. Some of these shortages seem to be coming because generic makers of some drugs just don’t find them lucrative enough to continue to make them. Now we’re looking at some major shortages of key cancer drugs, literally causing doctors to have to choose who lives and who dies. Are there any proposals on Capitol Hill for addressing this? It’s kind of flying below the radar, but it’s a pretty big deal.
Cohrs: I think we’ve seen Congressman Frank Pallone make this his pet issue in the reauthorization of PAHPA [Pandemic and All-Hazards Preparedness Act], which is the pandemic preparedness bill, which also expires on Sept. 30. So, you know, they have a full plate.
Rovner: Which we will talk about next week because they’re marking it up today.
Cohrs: Exactly. Yes. So but what we have seen is that Democrats in the House Energy and Commerce Committee have made this a top priority to at least have something on drug shortages in PAHPA. And I think my colleague John Wilkerson watched a hearing this week and noted that the chair of the committee, Cathy McMorris Rodgers, seemed more open to adding something than she had been in the past. But again, I think it’s kind of uncertain what we’ll see. And Sen. Bernie Sanders did add a couple of drug shortage policies to his version of PAHPA in the HELP Committee [Senate Committee on Health, Education, Labor and Pensions]. So I think we are seeing some movement on at least some policies to address it. But the problem is that the supply chain is not sexy and Republicans are not crazy about the idea of giving the FDA more authority. I think there is just so much skepticism of these public health agencies. It’s a hard systemic issue to crack. So I think we may see something, but it’s unclear whether any of this would provide any immediate relief.
Rovner: Everybody agrees that there’s a problem and nobody agrees on how to solve it. Welcome to Capitol Hill. OK, that is this week’s news. Now we will play my interview with Medicare chief Meena Seshamani, and then we’ll come back and do our extra credit. I am pleased to welcome to the podcast Meena Seshamani, deputy administrator and director of the Center for Medicare at the Centers for Medicare & Medicaid Services at the Department of Health and Human Services. That must be a very long business card.
Meena Seshamani: [laughs]
Rovner: Translated, that means she’s basically in charge of the Medicare program for the federal government. She comes to this job with more than the requisite experience. She is a physician, a head and neck surgeon in fact, a PhD health economist, a former hospital executive, and a former top administrator there at HHS. Meena, welcome to “What the Health?” We are so happy to have you.
Seshamani: Thank you so much for having me, Julie.
Rovner: So, our podcast listeners will know, because we talk about it so much, that the biggest Medicare story of 2023 is the launch of a program to negotiate prescription drug prices and hopefully bring down the price of some of those drugs. Can you give us a quick update on how that’s going and when patients can expect to start to see results?
Seshamani: Absolutely. The new prescription drug law, the Inflation Reduction Act, really has made historic changes to the Medicare program. And to your point, people are seeing those results right now. There is now a $35 cap on what someone will pay out-of-pocket for a month’s supply of covered insulin at the pharmacy, which is huge. I’ve met with people all over the country. Sometimes people are spending up to $400 for a month’s supply of this lifesaving medication. Also, vaccines at no cost out-of-pocket. And a lot of this leads to what you’re mentioning with the drug negotiation program, a historic opportunity for Medicare to negotiate drugs. In January, we put out a timeline of the various pieces that we’re putting in place to stand up this negotiation program. Along that timeline, we have released guidance that describes the process that we will undergo to negotiate, what we’ll think about as we’re engaging in negotiation. And the first 10 drugs for negotiation that are selected will be announced on Sept. 1. And that will then lead into the negotiation process.
Rovner: And as we’ve mentioned — I think it was on last week’s podcast — there’s a lot of lawsuits that are trying to stop this. Are you confident that you’re going to be able to overcome this and keep this train on the tracks?
Seshamani: Well, we don’t generally comment on the lawsuits. I will say that we are implementing this law in the most thoughtful manner possible. From the day that the law was enacted, we have been meeting with drug manufacturers, health plans, patient groups, health care providers, you know, experts in the field, to really understand the complexity of the drug space and what we can do with this opportunity to really improve things, improve access and affordability to have innovative therapies for the cures that people need.
Rovner: Well, while we are on that subject, we — not just Medicare, but society at large — is facing down a gigantic conundrum. The good news is that we’re finally starting to see drugs that can treat or possibly cure such devastating ailments as Alzheimer’s disease and obesity. But those drugs are currently so expensive, and the population that could benefit from them is so large, they could basically bankrupt the entire health care system. How is Medicare approaching that? Obviously, in the Alzheimer’s space, that could be a very big deal.
Seshamani: Well, Julie, we are committed to helping ensure that people have timely access to innovative treatments that can lead to improved care and better outcomes. And in doing this, we take into account what the Medicare law enables coverage for and what the evidence shows. So with Alzheimer’s, CMS underwent a national coverage determination. And consistent with that, Medicare is covering the drug when a physician and clinical team participates in the collection of evidence about how these drugs work in the real world, also known as a registry. And this is very important because it will enable us to gather more information on patient outcomes as we continue to see innovations in this space. And you mentioned obesity. In the Medicare law, there is a carve-out for drugs for weight loss.
Rovner: A carve-out meaning you can’t cover them.
Seshamani: Correct. It says that the Medicare Part D prescription drug program will not cover drugs for weight loss. So we are looking at the increasing evidence. And for example, where there is a drug that is used for diabetes, for example, you know, then it can certainly be covered. And this is an area that we are continuing to partner with our colleagues in the FDA on and that we’d like to partner with the broader community to continue to build the evidence base around benefits for the Medicare population as we continue to evaluate where we want to make sure that people have access.
Rovner: But are you thinking sort of generally about what to do about these drugs that cost sometimes tens of thousands of dollars a year, hundreds of thousands of dollars a year, that half the population could benefit from? I mean, that cannot happen, right, financially?
Seshamani: Well, Julie, this is where the new provisions in the new drug law really come into play. Thinking from access for people for the high-cost drugs, I think we all know what a financial strain the high cost of drugs have created for our nation’s seniors, where now, in 2025, there will be a $2,000 out-of-pocket cap, that people will not have to pay out-of-pocket more than $2,000, which enables them to access drugs. And on the other side, as we talked about with drug negotiation, where for drugs that have been in the market for seven years or 11 years, if they are high-cost drugs, they could potentially be selected for negotiation where we can then, you know, as we laid out in the guidance that we put out, look at what is the benefit that this drug provides to a population? What are the therapeutic alternatives? And then also consider things like what’s the cost of producing that drug and distributing it? How much federal support was given for the research and development of that drug? And how much is the total R & D costs? So I think that there are several tools that we’ve been given in the Inflation Reduction Act that demonstrate how we are continuing to think about how we can ensure that Medicare is delivering for people now and in the future.
Rovner: Well, speaking of things that are popular but also expensive, let’s talk briefly about Medicare Advantage. More and more beneficiaries are opting for private plans over traditional, fee-for-service Medicare. But the health plans have figured out lots of ways to game the system to make large profits basically at taxpayers’ expense. Is there a long-term plan for Medicare Advantage or are we just going to continue to play whack-a-mole, trying to plug the loopholes that the plans keep finding?
Seshamani: You know, as now we have 50% of the population in Medicare Advantage, Medicare Advantage plays a critical role in advancing our vision for the Medicare program around advancing health equity, expanding access to care, driving innovation, and enabling us to be good stewards of the Medicare dollar. And that vision that we have is reflected in all of the policies that we have put forward to date. And I might add that those policies really have been informed by engagement with everyone who’s interested in Medicare Advantage. We did a request for comment and got more than 4,000 suggestions from people. This has now come out in recent policies like cracking down on misleading marketing practices so that people can get the plan that best suits their needs; ensuring clear rules of the road for prior authorization and utilization management so we can make sure that people are accessing the medically necessary care that they need; things like improving network adequacy, particularly in behavioral health, so people can access the health care providers in the networks of the plans; and then the work that we’re doing around payment, to make sure that we’re paying accurately, updating the years that we use for data, looking at the coding patterns of Medicare Advantage. And again, this is all work that is important to make sure that the program is really serving the people in the Medicare program.
Rovner: So, as you know, we’ve done big investigative projects here at KFF Health News about both medical debt and nonprofit hospitals not living up to their responsibilities to the community. As the largest single payer of hospitals, what is Medicare doing to try and address requirements for charity care, for example?
Seshamani: Well, the. IRS oversees the requirements for community benefit, which is how hospitals maintain or get a nonprofit status. We have certainly worked with the Consumer Financial Protection Bureau and the Department of Treasury on, for example, issuing a request for information, seeking public comment on, you know, medical credit cards. But even beyond that, I think this is an example of where we need to bring more payment accuracy and transparency in the health care system. So, for example, we have recently just proposed strengthening hospital price transparency so that people can know what is the cost of services, standard charges that hospitals provide. We also are adding quality measures to hospitals, particularly around issues around health equity, making sure that hospitals are screening patients for social needs. And we’re also tying increasingly our payment programs to making sure that those underserved populations are receiving excellent care, so again, really trying to drive transparency, quality, and access through all of the work that we’re doing with hospitals.
Rovner: But can you leverage Medicare’s power? Obviously, you know, that was what created EMTALA [the Emergency Medical Treatment and Labor Act], was leveraging Medicare’s power. Can you leverage it here to try and push some of these hospitals to do things they seem reluctant to do?
Seshamani: Where we have our levers in the Medicare program, we absolutely are working with hospitals around issues of equity, so as I mentioned, you know, really embedding equity not only in our quality requirements but also in hospital operations — for example, that as part of their operations they need to be looking at health equity. You know, where we are looking at how they are providing care and addressing issues of patient safety. So, we continue to look into all of these angles, and where we can support good practices. For example, we just proposed in our inpatient prospective payment system rule that when hospitals are taking care of homeless patients, that can be considered in their payment, because we have found through our analyses that additional resources are being used to make sure that those patients are supported for all of their needs, and we’re encouraging hospitals to code for these social needs so that we can continue to assess with them where resources and supports are needed to provide the kind of care that we all want for our populations.
Rovner: Last question, and I know that this is big, so it’s almost unfair. One of the reasons we know that it’s getting so expensive to manage medical costs is the increasing involvement of private equity in health care. What’s the Biden administration doing to address this growing profit motive?
Seshamani: Yeah, Julie, I’ll come back to, you know, what I alluded to before around transparency. We are really committed to transparency in health care, and we are continuing to focus on gathering data that sheds light on what is happening in the health care market so that we can be good stewards of the taxpayer dollar. So I mentioned our work in hospital price transparency, where we have streamlined the enforcement process; we have proposed to require standard ways that hospitals are reporting their charges and standard locations where they have to put a footer on the hospital’s homepage so that people can find that data easily. In Medicare Advantage, we are requiring more reporting for the medical loss ratio for plans to report spending on supplemental benefits like dental, vision, etc. And we really want to hone in on where else we can gather more data to be able to enable all of us to see what is happening in this dynamic health care market; what’s working? What isn’t? And so we’re very interested in getting ideas.from everyone of where more data can be helpful to enable us to then enact policies that can make sure that the health care industries and the market are really serving people in the most effective way possible.
Rovner: Well, you’ve got a very big job, so I will let you get back to it. Thank you so much, Meena Seshamani.
Seshamani: Thank you for having me.
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. Shefali, why don’t you go first this week?
Luthra: Sure. So mine is from KFF Health News by a dream team, Bram Sable-Smith, Daniel Chang, Jazmin Orozco Rodriguez, and Sandy West. The headline is “Medical Exiles: Families Flee States Amid Crackdown on Transgender Care.” And I mean, it’s exactly what it sounds like. It’s this really person-grounded, quite deeply reported story about how restrictions on gender-affirming health care, especially for young people, are forcing families to leave their homes. And this is a really tough thing for people to do, you know, leave somewhere where you’ve lived for 10 years or longer and go somewhere where you don’t have ties. Moving is quite expensive. And I think this is a really important look at something that we anecdotally know is happening, haven’t seen enough really great deep dives on, and is something that potentially will happen more and more as people are forced to leave their homes if they can afford to do so because they don’t feel safe there anymore.
Rovner: Yeah, and this is the issue of doing these social issues state by state by state, just what’s happening now. Alice.
Ollstein: So I chose a piece from The Atlantic called “What Happened When Oregon Decriminalized Hard Drugs,” by Jim Hinch. It was really fascinating. On the one side, they say this is evidence that the policy has failed, that decriminalizing possession of small amounts of cocaine, heroin, all hard drugs, has been a failure because overdoses have actually gone up since then. But other experts quoted in this article say that, look, we tried the punitive war on drugs model for decades and decades and decades before declaring it a failure; how can we evaluate this after just a few years? It just takes more time to make this transition and takes more time to, you know, ramp up treatment and services for people, and because this happened three years ago, it was disrupted by the pandemic and, you know, services were not able to reach people, etc. So a really fascinating look.
Rovner: Yes, it’s quite the social experiment that’s going on in Oregon. Rachel.
Cohrs: So mine is from The New York Times, a group of reporters and a new series called “Operating Profits.” And the headline is “They Lost Their Legs. Doctors and Health Care Giants Profited.” And I think I’m just really excited to see more about this line of reporting about overutilization in health care and how certain payment incentives — I mean, they made a story about payment incentives in hospital outpatient departments and how pay rates change really personal and interesting, and it’s important. So, I mean, all these really dense rules that we’re seeing drop this summer do really have implications for patients. And there are bad actors out there who are kind of capitalizing on that. So I felt it was like really responsible reporting, mostly focused on one physician who, you know, was doing procedures that he shouldn’t have and other doctors ultimately were left to clean up the damage for these patients. And they had amputations that they maybe shouldn’t have had, which is such a serious and devastating consequence. I thought that was very important reporting, and I’m excited to see what’s next.
Rovner: Yeah, I’m looking forward to seeing the rest of the series. Well, my story this week is in the Los Angeles Times from my KFF Health News colleague Noam Levey, who’s been working on a giant project on medical debt. It’s called “Crushing Medical Debt Is Turning Americans Against Their Doctors.” And it points out something I hadn’t really thought about before, that outrageous and unexpected bills are undermining public confidence in medical providers and the medical system writ large. And so far, nobody’s doing very much about it. To quote from Noam’s piece, “Hospitals and doctors blame the government for underpaying them and blame insurers for selling plans with unaffordable deductibles. Insurers blame providers for obscene prices. Everyone blames drug companies.” Well, it’s going to take a lot of time to dig out of this hole, but probably it would help if everybody stopped digging. 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 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 @jrovner, and I’m on Threads @julie.rovner. Shefali.
Luthra: I’m @shefalil.
Rovner: Alice.
Ollstein: @AliceOllstein.
Rovner: Rachel.
Cohrs: I’m @rachelcohrs.
Rovner: We will be back in your feed next week. Until then, be healthy.
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1 year 10 months ago
Courts, Multimedia, Pharmaceuticals, Public Health, States, Abortion, CMS, Environmental Health, HHS, KFF Health News' 'What The Health?', NIH, Podcasts, Pregnancy, texas, U.S. Congress, Women's Health
As Low-Nicotine Cigarettes Hit the Market, Anti-Smoking Groups Press for Wider Standard
The idea seems simple enough.
Preserve all the rituals of smoking: Light up a cigarette, inhale the smoke, including the nasty stuff that can kill you, and exhale. But remove most of the nicotine, the chemical that makes tobacco so darn hard to quit, to help smokers smoke less.
The idea seems simple enough.
Preserve all the rituals of smoking: Light up a cigarette, inhale the smoke, including the nasty stuff that can kill you, and exhale. But remove most of the nicotine, the chemical that makes tobacco so darn hard to quit, to help smokers smoke less.
The Food and Drug Administration has been contemplating that strategy for at least six years as one way to make it easier for smokers to cut back, if not quit entirely. Less than two years ago, it authorized 22nd Century Group, a publicly traded plant biotech company based in Buffalo, New York, to advertise its proprietary low-nicotine cigarettes as modified-risk tobacco products.
Now, the first authorized cigarettes with 95% less nicotine than traditional smokes are coming to California, Florida, and Texas in early July, after a year of test-marketing in Illinois and Colorado. It’s part of an aggressive rollout by 22nd Century that, by year’s end, could bring its products to 18 states — markets that together account for more than half of U.S. cigarette sales.
But anti-smoking groups oppose greenlighting 22nd Century’s products. Instead, they urge federal regulators to expand on their original plan of setting a low-nicotine standard for all combustible cigarettes to make them minimally or nonaddictive. They expect the FDA to take the next step in that industrywide regulatory process as early as this fall.
“Unless and until there is a categorywide requirement that nicotine goes down to low, nonaddictive levels, this is not going to make a difference,” said Erika Sward, a spokesperson for the American Lung Association.
Major tobacco companies Altria, R.J. Reynolds, and ITG Brands did not respond to requests for comment.
Cigarette smoking is estimated to cause more than 480,000 deaths a year in the U.S., including from secondhand smoke, and contributes to tobacco use being the leading preventable cause of death nationally. In 2018, then-FDA Commissioner Scott Gottlieb wrote that setting a maximum nicotine level “could result in more than 8 million fewer tobacco-caused deaths through the end of the century – an undeniable public health benefit.”
The FDA reasoned that people would collectively smoke fewer cigarettes and have less exposure to the deadly toxins that are still present in low-nicotine cigarettes.
22nd Century says it used a patent-protected process to control nicotine biosynthesis in the tobacco plant, enabling it to create a pack of cigarettes with about as much nicotine as one Marlboro. It says generally that it uses “modern plant breeding technologies, including genetic engineering, gene-editing, and molecular breeding.”
Keeping 5% of the nicotine is enough to prevent smokers from seeking more to satisfy their craving, said John Miller, president of 22nd Century’s smoking division.
“There’s just enough in there that your brain thinks it’s getting it, but it’s not,” Miller said. “That was really one of the reasons we got to these levels of nicotine, is because you don’t have that additional smoking.”
Miller said the low-nicotine cigarettes can help some smokers cut back or quit, perhaps in conjunction with a nicotine patch or gum, when they’ve tried and failed with other stop-smoking programs.
Campaign for Tobacco-Free Kids President Matthew L. Myers supports the development of an industrywide low-nicotine standard, saying the concept would work only if consumers no longer had the alternative of a higher-nicotine cigarette.
“The concern with a product that’s still addictive, but delivers low levels of nicotine, in fact is that consumers will smoke more, because the evidence shows that somebody who’s addicted will smoke enough to satisfy their craving,” Myers said.
Both the FDA and anti-smoking groups cited studies that found lower levels of nicotine don’t prompt smokers to smoke more to reach the same nicotine levels. But those studies assumed smokers wouldn’t have a high-nicotine alternative, anti-smoking groups and researchers said.
Allowing low-nicotine cigarettes while conventional cigarettes remain available may be a public health detriment if they discourage smokers from quitting entirely or encourage others to start smoking because they think there’s a safe way to experiment with cigarettes, the Campaign for Tobacco-Free Kids and several health associations wrote in a letter urging the FDA to reverse its 22nd Century decision.
22nd Century’s cigarettes are still dangerous, and consumers must substantially cut back or quit smoking to get health advantages. But anti-smoking groups fear many smokers won’t understand that.
“If people are looking at this as a magic bullet and are still continuing their tobacco use, they are not doing anything to change their risk,” said Sward, of the lung association.
Anti-smoking groups particularly object to allowing 22nd Century to market menthol cigarettes even as the FDA is considering outlawing such cigarettes nationwide.
FDA spokesperson Abby Capobianco confirmed that 22nd Century has the only FDA-authorized low-nicotine cigarette but did not respond to requests for comment on the FDA’s plans for regulating nicotine in cigarettes.
California already outlaws menthol flavoring, and Miller said the company won’t challenge that state’s ban and won’t sell its menthol cigarettes in California.
But Miller hopes the company will eventually win an exemption from any federal ban, in part, he said, because more than half of menthol smokers are likely to switch to conventional cigarettes.
“That’s not what the FDA wants to happen,” Miller said. “They need an offramp for these menthol smokers and ours is obviously the natural.”
The company is expanding into California, Florida, and Texas because of the nation-leading size of their smoking populations. It previously announced plans to also begin selling its very low-nicotine, or VLN, cigarettes this year in Arizona, New Mexico, and Utah, and it may move into 10 more states.
The company is prioritizing seven states that offer tax incentives for products the FDA has said reduce tobacco risk, believing its cigarettes will have a price advantage over others in Colorado, Connecticut, Kentucky, Michigan, North Carolina, New Mexico, and Utah. Miller said the company may lobby California lawmakers to add similar incentives as part of the state’s extensive efforts to discourage smoking, which still addicts 10% of its residents.
Miller declined to disclose the company’s market share from the two test states but said sales were above expectations.
“If we can get this to the level of, like, a nonalcoholic beer — you know, 3% to 5% of the category — it’s a game changer,” Miller said. “We know that there’s a latent demand in the market for this product.”
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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1 year 11 months ago
california, Public Health, States, Arizona, Colorado, Connecticut, FDA, Florida, Illinois, Kentucky, Michigan, New Mexico, New York, North Carolina, texas, Utah, Vaping
Familias huyen de los estados que niegan atención de salud a las personas trans
Hal Dempsey quería “escaparse de Missouri”. Arlo Dennis está “huyendo de Florida”. La familia Tillison “no puede quedarse en Texas”.
Son parte de una nueva migración de estadounidenses que se están desarraigando debido a una oleada de leyes que restringen la prestación de servicios de salud para personas transgénero.
Missouri, Florida y Texas se encuentran entre al menos 20 estados que han limitado la atención de afirmación de género para jóvenes trans. Los tres estados también están entre aquellos que impiden que Medicaid, el seguro de salud público para personas de bajos ingresos, cubra aspectos clave de estos servicios para pacientes de todas las edades.
Más de una cuarta parte de los adultos trans encuestados por KFF y The Washington Post a fines del año pasado dijeron que se mudaron a otro vecindario, ciudad o estado en busca de un ambiente más tolerante. Ahora se sienten impulsados por las nuevas restricciones en la atención de la salud y la posibilidad de que estas se sigan multiplicando.
Muchos de ellos optan por estados que están aprobando leyes para proteger y apoyar estos servicios, lugares que se han convertido en santuarios. En California, por ejemplo, se aprobó una ley el otoño pasado que protege de demandas a las personas que reciben o brindan servicios de afirmación de género. Y ahora, los proveedores en California están recibiendo cada vez más llamadas de personas que quieren mudarse al estado para evitar interrupciones en sus servicios, dijo Scott Nass, médico local de familia y experto en atención de personas transgénero.
Pero esta afluencia de pacientes presenta un desafío, dijo Nass, “ya que el sistema actual no puede recibir a todos los refugiados que pudiera haber”.
En Florida, la persecución legislativa de las personas trans y su atención médica convenció a Arlo Dennis, de 35 años, de que es hora de irse. Hace más de una década que vive con los cinco miembros de su familia en Orlando. Ahora, tienen planes de mudarse a Maryland.
Dennis ya no tiene acceso a su terapia de reemplazo hormonal. Esto se debe a que desde fines de agosto, el seguro de Medicaid de Florida ya no cubre la atención médica relacionada con la transición. El estado considera que estos tratamientos son experimentales y que su eficacia no está suficientemente probada. Dennis dijo que su medicación se acabó en enero.
“Sin duda esto me ha causado problemas de salud mental y física”, explicó Dennis.
Agregó que mudarse a Maryland requiere recursos que su familia no tiene. Lanzaron una campaña de GoFundMe en abril y ya recaudaron más de $5,600, la mayoría donada por desconocidos, contó Dennis. Ahora la familia de tres adultos y dos niños piensa irse de Florida en julio. La decisión no fue fácil, pero sintieron que no había otra opción.
“No me importa si a mi vecino no le gusta mi forma de vivir”, dijo Dennis. “Pero esto era una prohibición literal de mi ser y me impedía el acceso a la atención médica”.
Mitch y Tiffany Tillison decidieron irse de Texas después de que los republicanos del estado enfocaron su agenda legislativa en las políticas anti-trans para los jóvenes. Su hija de 12 años se declaró trans hace unos dos años. Los padres pidieron que se publicara solo su segundo nombre, Rebecca: temen por su seguridad debido a las amenazas de violencia contra las personas trans.
Este año, la Legislatura de Texas aprobó una ley que limita la atención médica de afirmación de género para jóvenes menores de 18 años. La ley prohíbe específicamento aquellos servicios de salud física. Sin embargo, defensores de los derechos LGBTQ+ en el estado dicen que las medidas recientes también han tenido un escalofriante efecto sobre la prestación de servicios de salud mental para personas trans.
Los Tillison se negaron a precisar si su hija está recibiendo tratamiento y cuál. Pero afirmaron que reservan el derecho, como padres, de poder brindarle a su hija la atención que necesita, y que el estado de Texas les ha quitado ese derecho.
A esto se suman las amenazas cada vez más serias de violencia en su comunidad, sobre todo después del tiroteo masivo del 6 de mayo por parte de un supuesto neonazi. La masacre, que ocurrió en el centro comercial Allen Premium Outlets, en los suburbios de Dallas, a 20 millas de su casa, hizo que la familia decidiera mudarse al estado de Washington.
“La he mantenido a salvo”, dijo Tiffany Tillison, agregando que suele recordar el momento en que su hija le dijo que era trans durante un largo viaje a casa después de un torneo de fútbol. “Es mi responsabilidad seguir protegiéndola. Mi amor es interminable, incondicional”.
Por su parte, Rebecca tiene una actitud pragmática sobre la mudanza, que está planeada para julio. “Es triste pero tenemos que hacerlo”, dijo.
En Missouri, donde casi se aprueba una medida que limitaba la atención de la salud trans, algunas personas empezaron a repensar si deberían vivir ahí.
En abril, el fiscal general de Missouri, Andrew Bailey, presentó una norma de emergencia para limitar el acceso a la cirugía relacionada con la transición y el tratamiento hormonal cruzado para personas de todas las edades, además de restringir los bloqueadores de la pubertad, medicamentos que detienen la pubertad pero no alteran las características de género.
Al día siguiente, Dempsey, de 24 años, lanzó una campaña de GoFundMe para recaudar fondos para irse con sus parejas de Springfield, Missouri.
“Somos tres personas trans que dependen de la terapia de reemplazo hormonal y de la atención de afirmación de género que pronto será casi prohibida”, escribió Dempsey en su campaña de GoFundMe, agregando que querían “escapar de Missouri cuando se termine nuestro contrato de alquiler a fines de mayo.”
Dempsey dijo que su médico en Springfield les recetó un suministro de tres meses de terapia hormonal para cubrirlos hasta la mudanza.
Bailey retiró la norma en mayo, cuando la legislatura estatal restringió el acceso a estos tratamientos para menores pero no para adultos como Dempsey y sus parejas. Aún así, Dempsey dijo que no tenía muchas esperanzas para su futuro en Missouri.
El estado vecino de Illinois era una opción obvia para mudarse; la legislatura allí aprobó una ley en enero que exige que los seguros médicos regulados por el estado cubran la atención médica de afirmación de género sin ningún costo adicional. Dónde en Illinois exactamente era una pregunta más importante. Chicago y sus suburbios parecían demasiado caros. Sus parejas querían una comunidad progresista similar en tamaño y costo de vida a la ciudad que estaban dejando. Buscaban “un Springfield”, en Illinois.
“Pero no Springfield, Illinois”, bromeó Dempsey.
Gwendolyn Schwarz, de 23 años, también esperaba quedarse en Springfield, Missouri, su ciudad natal, donde recientemente se graduó de Missouri State University con un título en estudios de cine y medios de comunicación. Pensaba seguir su carrera académica en un programa de posgrado de la universidad y, en el siguiente año, someterse a una cirugía de transición, que puede requerir varios meses de recuperación.Pero sus planes cambiaron cuando la norma propuesta por Bailey generó miedo y confusión.“No quiero quedarme atrapada y temporalmente discapacitada en un estado que no reconoce mi humanidad”, dijo Schwarz.
Ella y un grupo de amigos tienen planeado mudarse al oeste, al estado de Nevada, cuyos legisladores aprobaron una medida que requiere que Medicaid cubra el tratamiento de afirmación de género para pacientes trans.
Schwarz espera que mudarse de Missouri a Carson City, la capital de Nevada, le permita seguir viviendo su vida sin miedo y eventualmente someterse a la cirugía que desea.
Dempsey y sus parejas finalmente decidieron mudarse a Moline, Illinois. Los tres tuvieron que renunciar a sus trabajos, pero han recaudado $3,000 en GoFundMe, más que suficiente para cubrir el depósito de un nuevo departamento.
El 31 de mayo, empacaron las pertenencias que no habían vendido e hicieron el viaje de 400 millas hasta su nuevo hogar.
Dempsey ya tuvo una cita con un proveedor médico en una clínica en Moline que atiende a la comunidad LGBTQ+, y consiguió que le recetaran los medicamentos que necesita para su terapia hormonal.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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1 year 11 months ago
Health Industry, Mental Health, Noticias En Español, Rural Health, States, california, Florida, Illinois, Legislation, LGBTQ+ Health, Maryland, Missouri, Nevada, texas, Transgender Health
Medical Exiles: Families Flee States Amid Crackdown on Transgender Care
Hal Dempsey wanted to “escape Missouri.” Arlo Dennis is “fleeing Florida.” The Tillison family “can’t stay in Texas.”
They are part of a new migration of Americans who are uprooting their lives in response to a raft of legislation across the country restricting health care for transgender people.
Hal Dempsey wanted to “escape Missouri.” Arlo Dennis is “fleeing Florida.” The Tillison family “can’t stay in Texas.”
They are part of a new migration of Americans who are uprooting their lives in response to a raft of legislation across the country restricting health care for transgender people.
Missouri, Florida, and Texas are among at least 20 states that have limited components of gender-affirming health care for trans youth. Those three states are also among the states that prevent Medicaid — the public health insurance for people with low incomes — from paying for key aspects of such care for patients of all ages.
More than a quarter of trans adults surveyed by KFF and The Washington Post late last year said they had moved to a different neighborhood, city, or state to find more acceptance. Now, new restrictions on health care and the possibility of more in the future provide additional motivation.
Many are heading to places that are passing laws to support care for trans people, making those states appealing sanctuaries. California, for example, passed a law last fall to protect those receiving or providing gender-affirming care from prosecution. And now, California providers are getting more calls from people seeking to relocate there to prevent disruptions to their care, said Scott Nass, a family physician and expert on transgender care based in the state.
But the influx of patients presents a challenge, Nass said, “because the system that exists, it can’t handle all the refugees that potentially are out there.”
In Florida, the legislative targeting of trans people and their health care has persuaded Arlo Dennis, 35, that it is time to uproot their family of five from the Orlando area, where they’ve lived for more than a decade. They plan to move to Maryland.
Dennis, who uses they/them pronouns, no longer has access to hormone replacement therapy after Florida’s Medicaid program stopped covering transition-related care in late August under the claim that the treatments are experimental and lack evidence of being effective. Dennis said they ran out of their medication in January.
“It’s definitely led to my mental health having struggles and my physical health having struggles,” Dennis said.
Moving to Maryland will take resources Dennis said their family does not have. They launched a GoFundMe campaign in April and have raised more than $5,600, most of it from strangers, Dennis said. Now the family, which includes three adults and two children, plans to leave Florida in July. The decision wasn’t easy, Dennis said, but they felt like they had no choice.
“I’m OK if my neighbor doesn’t agree with how I’m living my life,” Dennis said. “But this was literally outlawing my existence and making my access to health care impossible.”
Mitch and Tiffany Tillison decided they needed to leave Texas after the state’s Republicans made anti-trans policies for youth central to their legislative agenda. Their 12-year-old came out as trans about two years ago. They asked for only her middle name, Rebecca, to be published because they fear for her safety due to threats of violence against trans people.
This year, the Texas Legislature passed a law limiting gender-affirming health care for youth under 18. It specifically bans physical care, but local LGBTQ+ advocates say recent crackdowns also have had a chilling effect on the availability of mental health therapy for trans people.
While the Tillisons declined to specify what treatment, if any, their daughter is getting, they said they reserve the right, as her parents, to provide the care their daughter needs — and that Texas has taken away that right. That, plus increasing threats of violence in their community, particularly in the wake of the May 6 mass shooting by a professed neo-Nazi at Allen Premium Outlets, about 20 miles from their home in the Dallas suburbs, caused the family to decide to move to Washington state.
“I’ve kept her safe,” said Tiffany Tillison, adding that she often thinks back to the moment her daughter came out to her during a long, late drive home from a daylong soccer tournament. “It’s my job to continue to keep her safe. My love is unending, unconditional.”
For her part, Rebecca is pragmatic about the move planned for July: “It’s sad, but it is what we have to do,” she said.
A close call on losing key medical care in Missouri also pushed some trans people to rethink living there. In April, Missouri Attorney General Andrew Bailey issued an emergency rule seeking to limit access to transition-related surgery and cross-sex hormones for all ages, and restrict puberty-blocking drugs, which pause puberty but don’t alter gender characteristics. The next day, Dempsey, 24, who uses they/them pronouns, launched a GoFundMe fundraiser for themself and their two partners to leave Springfield, Missouri.
“We are three trans individuals who all depend on the Hormone Replacement Therapy and gender affirming care that is soon to be prohibitively limited,” Dempsey wrote in the fundraising appeal, adding they wanted to “escape Missouri when our lease is up at the end of May.”
Dempsey said they also got a prescription for a three-month supply of hormone therapy from their doctor in Springfield to tide them over until the move.
Bailey withdrew his rule after the state legislature in May restricted new access to such treatments for minors, but not adults like Dempsey and their partners. Still, Dempsey said their futures in Missouri didn’t look promising.
Neighboring Illinois was an obvious place to move; the legislature there passed a law in January that requires state-regulated insurance plans to cover gender-affirming health care at no extra cost. Where exactly was a bigger question. Chicago and its suburbs seemed too expensive. The partners wanted a progressive community similar in size and cost of living to the city they were leaving. They were looking for a Springfield in Illinois.
“But not Springfield, Illinois,” Dempsey quipped.
Gwendolyn Schwarz, 23, had also hoped to stay in Springfield, Missouri, her hometown, where she had recently graduated from Missouri State University with a degree in film and media studies. She had planned to continue her education in a graduate program at the university and, within the next year, get transition-related surgery, which can take a few months of recovery.
But her plans changed as Bailey’s rule stirred fear and confusion.
“I don’t want to be stuck and temporarily disabled in a state that doesn’t see my humanity,” Schwarz said.
She and a group of friends are planning to move west to Nevada, where state lawmakers have approved a measure that requires Medicaid to cover gender-affirming treatment for trans patients.
Schwarz said she hopes moving from Missouri to Nevada’s capital, Carson City, will allow her to continue living her life without fear and eventually get the surgery she wants.
Dempsey and their partners settled on Moline, Illinois, as the place to move. All three had to quit their jobs to relocate, but they have raised $3,000 on GoFundMe, more than enough to put a deposit down on an apartment.
On May 31, the partners packed the belongings they hadn’t sold and made the 400-mile drive to their new home.
Since then, Dempsey has already been able to see a medical provider at a clinic in Moline that caters to the LGBTQ+ community — and has gotten a new prescription for hormone therapy.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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1 year 11 months ago
Health Industry, Mental Health, Rural Health, States, california, Florida, Illinois, Legislation, LGBTQ+ Health, Maryland, Missouri, Nevada, texas, Transgender Health
Marihuana legal es más potente que nunca pero no está bien regulada
La marihuana y otros productos que contienen THC, el principal ingrediente psicoactivo de la planta, se han vuelto más potentes y peligrosos a medida que la legalización los ha vuelto más accesibles.
Décadas atrás, el contenido de THC de la hierba solía ser inferior al 1,5%. Hoy, algunos productos tienen más de un 90%.
La marihuana y otros productos que contienen THC, el principal ingrediente psicoactivo de la planta, se han vuelto más potentes y peligrosos a medida que la legalización los ha vuelto más accesibles.
Décadas atrás, el contenido de THC de la hierba solía ser inferior al 1,5%. Hoy, algunos productos tienen más de un 90%.
La euforia de antaño ha dado paso a algo más alarmante. Cientos de miles de personas llegan a salas de emergencias por crisis relacionadas con la marihuana, y millones sufren trastornos psicológicos vinculados al consumo de cannabis, según investigaciones federales.
Pero los organismos reguladores no están a la altura.
En los estados que permiten la venta y el consumo de la marihuana y sus derivados, la protección al consumidor no es consistente.
“En muchos estados, los productos tienen una etiqueta de advertencia y poco más por parte de las entidades reguladoras”, dijo Cassin Coleman, vicepresidente del comité de asesoramiento científico de la Asociación Nacional de la Industria del Cannabis.
En general, el gobierno federal no ha intervenido. Sigue prohibiendo la marihuana como sustancia catalogada en la Lista 1 —como droga sin uso médico aceptado y con un alto riesgo de abuso— en virtud de la Ley de Sustancias Controladas (CSA). Pero en lo que respecta a la venta de cannabis, que muchos estados han legalizado, no regula características como la pureza o la potencia.
La Administración de Drogas y Alimentos (FDA) “básicamente se ha cruzado de brazos y no ha cumplido con su deber de proteger la salud pública”, afirmó Eric Lindblom, de la Facultad de Derecho de la Universidad de Georgetown que anteriormente trabajó en el Centro para Productos del Tabaco de la FDA.
La marihuana se ha transformado profundamente desde que generaciones de estadounidenses la usaron por primera vez.
El cannabis se cultiva para suministrar dosis mucho más altas de THC. En 1980, el contenido de THC de la marihuana confiscada era inferior al 1,5%. Hoy en día, muchas variedades de flores de cannabis —la materia vegetal que se puede fumar en un porro— tienen más de un 30% de THC.
Recientemente, en un dispensario de California el menú incluía una variedad con un 41% de THC.
La legalización también ha abierto la puerta a productos que se extraen de la marihuana pero que no siquiera parecidos: concentrados de THC aceitosos, cerosos o cristalinos que se calientan e inhalan mediante el vapeo o el dab, utilizando dispositivos parecidos a un soplete.
Los concentrados actuales pueden tener más de un 90% de THC. Algunos se anuncian como THC casi puro.
Pocos personifican la expansión de la marihuana de forma tan clara como John Boehner, ex presidente de la Cámara de Representantes de Estados Unidos. El republicano de Ohio se opuso durante mucho tiempo a la marihuana y, en 2011, se declaró “inalterablemente contrario” a su legalización.
Ahora forma parte del consejo directivo de Acreage Holdings, un productor de derivados de la marihuana.
Y Acreage Holdings ilustra la evolución del sector. Su marca Superflux comercializa un producto para vapear —”resina pura en un formato cómodo e instantáneo”— y concentrados como “budder”, “sugar”, “shatter” y “wax”. La empresa anuncia su concentrado de “THCa cristalino” como “lo último en potencia”.
Según el Instituto Nacional sobre el Abuso de Drogas, las concentraciones más elevadas entrañan mayores riesgos. “Los riesgos de dependencia física y adicción aumentan con la exposición a altas concentraciones de THC, y las dosis más altas de THC tienen más probabilidades de producir ansiedad, agitación, paranoia y psicosis”, se explica en su sitio web.
En 2021, 16,3 millones de personas en Estados Unidos —el 5,8% de las personas de 12 años en adelante— habían sufrido un trastorno por consumo de marihuana en el último año, según una encuesta publicada en enero por el Departamento de Salud y Servicios Humanos (HHS).
Esta cifra es muy superior a la suma de los trastornos por consumo de cocaína, heroína, metanfetamina, estimulantes de venta bajo receta, como Adderall, o analgésicos recetados, como fentanilo y OxyContin.
Otras drogas son más peligrosas que la marihuana, y la mayoría de las personas afectadas por su consumo padecieron un caso leve. Pero aproximadamente 1 de cada 7 —más de 2,6 millones de personas— padecieron un caso grave, según la encuesta federal.
La mayoría de los médicos equiparan el término “trastorno grave por consumo de sustancias” con la adicción, señaló Wilson Compton, subdirector del Instituto Nacional sobre el Abuso de Drogas.
El trastorno por consumo de cannabis “puede ser devastador”, afirmó Smita Das, psiquiatra de Stanford y presidenta de un consejo sobre adicciones de la Asociación Americana de Psiquiatría.
Das dijo que ha visto vidas destrozadas por el cannabis: personas de éxito que han perdido familias y trabajos. “Se encuentran en una situación en la que no saben cómo han llegado, porque sólo era un porro, sólo era cannabis, y no se suponía que el cannabis les creara adicción”, explicó Das.
Entre los diagnósticos médicos atribuidos a la marihuana figuran la “dependencia del cannabis con trastorno psicótico con delirios” y el síndrome de hiperémesis cannabinoide, una forma de vómito persistente.
Se estima que unas 800,000 personas realizaron visitas a emergencias relacionadas con la marihuana en 2021, según un estudio del gobierno publicado en diciembre de 2022.
Derecho a desintoxicación.
Un padre de Colorado pensó que era cuestión de tiempo para que el cannabis matara a su hijo.
En la primavera de 2021, el adolescente pasó un semáforo en rojo, chocó contra otro auto —resultando heridos él y el otro conductor— y huyó del lugar, según recordó el padre en una entrevista.
En los restos del accidente, el padre encontró porros, envases vacíos de un concentrado de THC de alta potencia conocido como “wax” y un vaporizador de THC.
En el teléfono móvil de su hijo descubrió mensajes de texto y decenas de referencias al “dabbing” y a la hierba. El adolescente dijo que había estado fumando antes del accidente y que intentó suicidarse.
Semanas después, la policía ordenó su ingreso involuntario en un hospital para una evaluación psiquiátrica. Según un informe policial, creía que lo perseguían francotiradores de un cártel de drogas.
El médico que evaluó al adolescente le diagnosticó “abuso de cannabis”.
“Deja de consumir dabs o wax, ya que pueden volverte extremadamente paranoico”, escribió el médico. “Vete directamente al programa de desintoxicación que elijas”.
Según el relato del padre, en los dos últimos años el adolescente sufrió varias retenciones involuntarias, docenas de encuentros con la policía, repetidos encarcelamientos y una serie de estadías en centros de tratamiento hospitalario.
A veces parecía fuera de la realidad, y enviaba mensajes de texto diciendo que Dios le hablaba y le daba superpoderes.
Los daños también fueron económicos. Los reclamos al seguro médico por su tratamiento ascendieron a casi $600,000 y los gastos de la familia llegaron a casi $40,000 hasta febrero.
En las entrevistas para este artículo, el padre habló bajo condición de anonimato para no perjudicar la recuperación de su hijo.
Está convencido de que la enfermedad mental de su hijo fue el resultado del consumo de drogas. Dijo que los síntomas remitían cuando su hijo dejaba de consumir THC y volvían cuando usaba de nuevo.
Su hijo tiene ahora 20 años, ha dejado la marihuana y le va bien, dijo el padre, y añadió: "No me cabe la menor duda de que el consumo de cannabis fue lo que le causó la psicosis, los delirios y la paranoia".
Regulación estatal desigual
Ahora, el uso médico de la marihuana es legal en 40 estados y el Distrito de Columbia, y el uso recreativo o para adultos es legal en 22 estados más el Distrito de Columbia, según MJBizDaily, una publicación especializada.
Al principio de la pandemia de covid-19, mientras gran parte de Estados Unidos cerró sus negocios, los dispensarios de marihuana siguieron abiertos. Muchos estados los declararon negocios esenciales.
Pero sólo dos estados que permiten el uso para adultos, Vermont y Connecticut, han puesto límites al contenido de THC —30% para la flor de cannabis y 60% para los concentrados de THC— y eximen de los límites a los cartuchos precargados, dijo Gillian Schauer de la Asociación de Reguladores de Cannabis, un grupo de reguladores estatales.
Algunos estados limitan el número de onzas o gramos que los consumidores pueden comprar. Sin embargo, incluso un poco de marihuana puede equivaler a mucho THC, apuntó Rosalie Liccardo Pacula, profesora de políticas de salud, economía y derecho en la Universidad del Sur de California.
Algunos estados sólo permiten el uso médico de productos con bajo contenido de THC; por ejemplo, en Texas, las sustancias que no contienen más de un 0,5% de THC en peso. Y algunos estados exigen etiquetas de advertencia. En Nueva Jersey, los productos de cannabis con más de un 40% de THC deben declarar: "Este es un producto de alta potencia y puede aumentar el riesgo de psicosis".
La normativa sobre marihuana de Colorado tiene más de 500 páginas. Sin embargo, se enfatizan los límites de las protecciones al consumidor: "Este producto se ha producido sin supervisión reglamentaria en materia de salud, seguridad o eficacia".
Determinar las normas adecuadas puede no ser sencillo. Por ejemplo, las etiquetas de advertencia podrían proteger a la industria de la marihuana de su responsabilidad, al igual que hicieron con las empresas tabacaleras durante años. Poner un tope a la potencia podría limitar las opciones de las personas que toman dosis elevadas para aliviar problemas médicos.
En general, en el ámbito estatal, la industria del cannabis ha frenado los esfuerzos reguladores argumentando que unas normas onerosas dificultarían la competencia entre las empresas legítimas y las ilícitas, explicó Pacula.
Pacula y otros investigadores han pedido al gobierno federal que intervenga.
Meses después de terminar su mandato como comisionado de la FDA, Scott Gottlieb hizo un llamamiento similar.
Al quejarse de que los estados habían llegado "muy lejos mientras el gobierno federal permanecía al margen", Gottlieb pidió "un esquema nacional uniforme para el THC que proteja a los consumidores."
Eso fue en 2019 y poco ha cambiado desde entonces.
¿Dónde está la FDA?
La FDA supervisa los alimentos, los medicamentos recetados, los de venta libre y los dispositivos médicos. Regula el tabaco, la nicotina y los vapes de nicotina. Supervisa las etiquetas de advertencia del tabaco. En interés de la salud y la seguridad públicas, también regula los productos botánicos, productos médicos que pueden incluir material vegetal.
Sin embargo, cuando se trata de la marihuana para fumar, los concentrados de THC derivados del cannabis que se vapean o dabean y los comestibles infundidos con THC, la FDA parece estar muy al margen.
La marihuana medicinal que se vende en los dispensarios no está aprobada por la FDA. La agencia no ha avalado su seguridad o eficacia ni ha determinado la dosis adecuada. No inspecciona las instalaciones donde se producen los productos ni evalúa el control de calidad.
La agencia sí invita a los fabricantes a someter los productos del cannabis a ensayos clínicos y a su proceso de aprobación de medicamentos.
El sitio web de la FDA señala que el THC es el ingrediente activo de dos medicamentos aprobados por la FDA para el tratamiento del cáncer. Aparentemente, sólo por eso la sustancia está bajo la jurisdicción de la FDA.
La FDA tiene "todo el poder que necesita para regular de forma mucho más eficaz los productos de cannabis legalizados por los estados", afirmó Lindblom, ex funcionario de la agencia.
Al menos públicamente, la FDA no le ha prestado atención a los concentrados de THC derivados del cannabis o la hierba fumada en porros, sino más bien en otras sustancias: una variante del THC derivada del cáñamo, que el gobierno federal ha legalizado, y un derivado diferente del cannabis llamado cannabidiol o CBD, que se ha comercializado como terapéutico.
"La FDA se ha comprometido a vigilar el mercado, identificar los productos de cannabis que plantean riesgos y actuar, dentro de nuestras competencias, para proteger al público", declaró Courtney Rhodes, vocera de la FDA.
"Muchos, la mayoría de los productos con THC se ajustan a la definición de marihuana, que es una sustancia controlada. La Drug Enforcement Administration (DEA) regula la marihuana en virtud de la Ley de Sustancias Controladas (CSA). Le remitimos a la DEA para preguntas sobre la regulación y aplicación de las disposiciones de la CSA", escribió Rhodes en un correo electrónico.
La DEA, dependiente del Departamento de Justicia, no respondió a las preguntas formuladas para este artículo.
En cuanto al Congreso, quizá su medida más importante haya sido limitar la aplicación de la prohibición federal.
"Hasta ahora, la respuesta federal a las acciones estatales para legalizar la marihuana ha consistido, sobre todo, en permitir que los estados apliquen sus propias leyes sobre la droga", señaló un informe de 2022 del Servicio de Investigación del Congreso.
En octubre, el presidente Joe Biden ordenó al secretario de Salud y Servicios Humanos y al fiscal general que revisaran la postura del gobierno federal respecto a la marihuana: si debería seguir clasificada entre las sustancias más peligrosas y estrictamente controladas.
En diciembre, Biden firmó un proyecto de ley que ampliaba la investigación sobre la marihuana y obligaba a las agencias federales a estudiar sus efectos. La ley dice que las agencias tienen un año para publicar sus conclusiones.
Algunos defensores de la marihuana dicen que el gobierno federal podría desempeñar un papel más constructivo.
"La NORML no opina que el cannabis sea inocuo, sino que la mejor forma de mitigar sus riesgos potenciales es mediante la legalización, la regulación y la educación pública", afirmó Paul Armentano, subdirector del grupo antes conocido como Organización Nacional para la Reforma de las Leyes sobre la Marihuana (NORML).
"Los productos tienen que someterse a pruebas de pureza y potencia", añadió, y "el gobierno federal podría ejercer cierta supervisión en la concesión de licencias a los laboratorios que prueban esos productos".
Mientras tanto, según Coleman, asesor de la Asociación Nacional de la Industria del Cannabis, los estados se quedan "teniendo que actuar como si fueran USDA + FDA + DEA, todo al mismo tiempo".
¿Y dónde deja eso a los consumidores? Algunos, como Wendy E., jubilada en sus 60 años, luchan contra los efectos de la marihuana.
Wendy, que habló con la condición de que no se revelara su nombre, empezó a fumar marihuana en la secundaria en los años 70 y la convirtió en su estilo de vida durante décadas.
Luego, cuando su estado la legalizó, la compró en dispensarios "y enseguida me di cuenta de que la potencia era mucho mayor que la que yo había consumido tradicionalmente", contó. "Parecía haber aumentado de manera exponencial".
En 2020, explicó, la marihuana legal —mucho más fuerte que la hierba ilícita de su juventud— la llevó a obsesionarse con el suicidio.
Antes, la mujer que se define como "hippie de la madre tierra" encontraba camaradería pasando un porro con sus amigos. Ahora asiste a reuniones de Marihuana Anónimos, con otras personas que se recuperan de esta adicción.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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2 years 1 month ago
Health Industry, Mental Health, Noticias En Español, Colorado, Connecticut, FDA, Latinos, Legislation, marijuana, New Jersey, Substance Misuse, texas, Vermont
Pregúntale a chatbot: ¿qué hay para cenar?
Olivia Scholes, de 28 años, de Vancouver, British Columbia, tiene síndrome de ovario poliquístico o SOP. Es una de cada 10 mujeres a nivel mundial a las que se les diagnostica esta afección hormonal, que puede causar múltiples quistes ováricos, infertilidad, aumento de peso y otros problemas.
Olivia Scholes, de 28 años, de Vancouver, British Columbia, tiene síndrome de ovario poliquístico o SOP. Es una de cada 10 mujeres a nivel mundial a las que se les diagnostica esta afección hormonal, que puede causar múltiples quistes ováricos, infertilidad, aumento de peso y otros problemas.
Después de su diagnóstico hace 10 años, Scholes controló su afección en parte tratando de consumir, o evitar, ciertos alimentos y bebidas. Pero a veces, transferir lo que sabía que tenía que hacer a sus platillos diarios era complicado y requería de tiempo.
“El hecho de tener esa información no significa que planee mis comidas con esa información todo el tiempo”, dijo Scholes.
Scholes estaba navegando por TikTok cuando vio un video que explicaba cómo se usaba ChatGPT para crear un plan detallado de nutrición y entrenamiento.
Ese video la interesó a ver si chatbot, un programa de inteligencia artificial entrenado para ofrecer respuestas detalladas, podría brindarle opciones de comidas adaptadas al SOP.
El control del peso y de la insulina puede ayudar a reducir el impacto de la afección. Debido a que muchas personas con SOP experimentan resistencia a la insulina, controlar sus niveles a través de la dieta es uno de los mejores pasos que se puede tomar.
Scholes comenzó preguntando a ChatGPT si sabía cuáles eran los mejores alimentos para las personas con síndrome de ovario poliquístico y resistencia a la insulina, y el chatbot le proporcionó una lista. Luego preguntó si el sistema podría darle un plan de dos semanas, con tres comidas al día, dos refrigerios y postres sin edulcorantes artificiales.
En cuestión de segundos, Scholes tenía una lista de alimentos, que luego le pidió a ChatGPT que la convirtiera en una lista de compras.
Scholes dijo que, al transformar la información en comidas planificadas, el chatbot le facilitó la compra de ingredientes para una variedad de menús.
“La gran ayuda de ChatGPT no solo fue que tomó la información que ya conocía; puso esa información en un espacio tangible para mí”, dijo Scholes.
ChatGPT, desarrollada por la empresa OpenAI, se lanzó públicamente en noviembre y llegó a 100 millones de usuarios activos en enero, lo que la convirtió en la aplicación para consumidores de más rápido crecimiento en la historia.
ChatGPT está entrenada en una gran cantidad de texto de una variedad de fuentes, como Wikipedia, libros, artículos de noticias y revistas científicas. El chatbot avanzado de inteligencia artificial (IA) permite a los usuarios ingresar un mensaje de texto y recibir un resultado generado de manera inteligente, que además, permite iniciar una conversación.
Otros chatbots, como el chat de Google Bard y Bing AI, también de Microsoft, son similares a ChatGPT y pueden planificar comidas.
Algunos profesionales de salud y bienestar dicen que la capacidad de ChatGPT para tener conversaciones puede ser útil para generar planes de comidas e ideas para personas que tienen objetivos de salud y necesidades nutricionales específicas.
Scholes compartió su experiencia usando ChatGPT en un video de TikTok. Ese video ahora tiene más de 1.3 millones de visitas y una sección de comentarios colmada de preguntas sobre su experiencia.
En febrero, Jamie Askey, de Lufkin, Texas, hizo un video de TikTok explicando cómo usar ChatGPT para generar planes gratis de comidas y listas de compras que cumplan con los objetivos de calorías y macronutrientes: los nutrientes que el cuerpo necesita, como grasas, carbohidratos y proteínas.
Askey ha hecho muchos videos desde principios de 2021 dando consejos de salud, desde recetas fáciles para preparar comidas hasta consejos sobre cómo dejar de comer compulsivamente.
Su video ahora tiene más de 13,000 visitas en TikTok, con gente agradecida por los consejos.
“Lo mejor de este sitio web es que es muy conversacional”, dijo Askey sobre ChatGPT.
A diferencia de Google y otros motores de búsqueda, los usuarios no tienen que buscar un tema a la vez. El formato de diálogo hace posible que ChatGPT siga una instrucción, brinde una respuesta detallada y responda a preguntas de seguimiento.
Los usuarios interesados en generar opciones de comidas pueden decirle a ChatGPT “Quiero que actúes como nutricionista” o “Quiero que me hagas un plan de nutrición saludable”. El chatbot luego responderá con preguntas aclaratorias para ayudar a generar un plan de comidas apropiado. Es posible que el usuario deba proporcionar información adicional, como su altura, peso, restricciones dietéticas y objetivos.
Askey, quien es enfermera y entrenadora certificada en macronutrición, advierte que las personas con enfermedades crónicas deben ser evaluadas por un profesional antes de usar un chatbot para planificar comidas.
“Las posibilidades son infinitas cuando le preguntas a esta máquina”, dijo Askey. “Pero tienes que pensar que no siempre es blanco y negro. Hay áreas grises y ahí es donde entra en juego el historial de salud. Ahí es donde entra en juego el historial de dietas”.
Los usuarios de ChatGPT están entusiasmados con las capacidades del programa y con la idea de que podría simplificar las tareas cotidianas.
Pero el chatbot no está exento de fallas. Un problema: los datos de entrenamiento de ChatGPT están actualizados hasta 2021, lo que significa que parte de la información que proporciona puede estar desactualizada. Para la planificación de comidas y la nutrición, el programa no puede obtener las últimas pautas de salud y bienestar, lo que puede ser particularmente problemático para las personas con ciertas afecciones de salud.
El modelo también puede generar información incorrecta, proporcionando respuestas incorrectas o malinterpretando lo que pregunta el usuario. Cuando Scholes le pidió al chatbot las comidas para dos semanas, el chatbot se detuvo en el día ocho.
Algunos usuarios también han expresado su preocupación por fallas y sesgos dentro de la tecnología que pueden afectar negativamente los tipos de respuestas que genera. En diciembre de 2022, Steven T. Piantadosi, profesor asociado de Psicología en la Universidad de California-Berkeley, publicó una cadena de Twitter que destacaba los sesgos.
OpenAI, la empresa de investigación de inteligencia artificial detrás de ChatGPT, ha reconocido el potencial de sesgo dentro de la IA. Dijo en un blog en febrero que muchas personas están ” preocupadas por los sesgos en el diseño y el impacto de los sistemas de IA”.
En esa publicación, la compañía también describió algunos de los pasos que está tomando para eliminarlos.
Scholes se pregunta si los prejuicios existentes contra ciertos tipos de personas podrían afectar sus resultados.
“Si ChatGPT se basa en algún tipo de material fóbico contra las personas con sobrepeso, y yo busco material dirigido a mujeres gordas que lidian con problemas de gordura y SOP, ¿qué tipo de sesgos ya están integrados en ese sistema?”
Para cualquiera que esté considerando usar ChatGPT para generar un plan de comidas con metas de salud, Askey recomendó siempre verificar. “La IA no es una persona”, dijo. “Entonces, siempre tienes que verificar”.
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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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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