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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Mary Agnes Carey, Partnerships Editor and Senior Correspondent, oversees placement of KFF Health News content in publications nationwide. She has covered health care policy and politics for KFF Health News, CQ, Dow Jones Newswires, and other news outlets.

Supreme Court justices could act at any moment on access to the abortion pill mifepristone. Beyond reproductive health, their ruling could carry significant implications for states’ rights and FDA independence and integrity. For now, though, observers are unsure what the court will do — or what exactly prompted justices to again delay their decision this week.

At the Capitol, lawmakers grumbled, scoffed, and bickered this week as House Speaker Kevin McCarthy revealed the Republican proposal to cut government spending. The package would be dead-on-arrival in the Democratic-controlled Senate. But of note is the pushback from within McCarthy’s own caucus, with some hard-right conservatives pressing to go further by demanding the repeal of the Inflation Reduction Act in exchange for raising the debt ceiling.

And President Joe Biden pursued new efforts to grant legal status to young immigrants living in the country illegally who were brought here as children, sometimes called “Dreamers,” as his administration announced a plan to grant them access to government-funded health coverage.

This week’s panelists are Mary Agnes Carey of KFF Health News, Rachel Cohrs of Stat, Sandhya Raman of CQ Roll Call, and Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Panelists

Rachel Cohrs
Stat News

@rachelcohrs

Read Rachel's stories

Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

@JoanneKenen

Read Joanne's stories

Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories

Among the takeaways from this week’s episode:

• The Supreme Court extended its stay on the use of mifepristone through Friday, giving justices longer to act on a major, complicated case with nationwide implications for reproductive health. It is unclear what the court will do, though there are several actions it could take — including sending the case back to the lower courts or again extending the stay and buying justices even more time to come to agreement or pen dissents.
• GenBioPro, which produces the generic version of mifepristone, sued the FDA on Wednesday, attempting to preserve access to the drug. About two-thirds of the mifepristone currently used in the United States is generic.
• In congressional news, House Speaker McCarthy released what is effectively Republicans’ opening offer in the fight over raising the debt ceiling. The package includes GOP health priorities that would not garner needed support in the Senate, like work requirements for Medicaid and the clawback of unspent covid-19 pandemic funds.
• While health costs are high across government programs, Medicaid takes the big hit in the Republican proposal to cut federal spending. Republicans have embraced work requirements for government assistance since at least the 1980s, yet in Arkansas — a state that implemented work rules for Medicaid — it has proved challenging to verify that enrollees are meeting those requirements.
• The Senate Finance Committee, which has jurisdiction over much of federal health spending, revealed a package this week to tackle drug pricing. While the proposal is in the early stages, it seeks to incorporate bipartisan measures touching pharmacy benefit managers, insulin users, and more.
• And on the coverage front, the Biden administration announced that immigrant kids brought to the United States who remain here under the Deferred Action for Childhood Arrivals program will be able to apply for Medicaid and Affordable Care Act coverage. This eligibility expansion comes as states prepare to disenroll those who no longer qualify for Medicaid as the public health emergency’s coverage protections expire. Expect a fight from some states as they resist being forced to cover insurance for individuals living in the U.S. without legal permission.

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

Mary Agnes Carey: The New York Times’ “A Beauty Treatment Promised to Zap Fat. For Some, It Brought Disfigurement,” by Anna Kodé

Joanne Kenen: The New York Times’ “My Transplanted Heart and I Will Die Soon,” by Amy Silverstein

Sandhya Raman: ABC News’ “Puerto Rico’s Water Supply Is Being Depleted, Contaminated by Manufacturing Industry on the Island, Experts Say,” by Jessie DiMartino, Lilia Geho, and Julia Jacobo

Rachel Cohrs: The Wall Street Journal’s “‘I Hate You, Kathie Lee Gifford!’ Ozempic Users Report Bizarre Dreams,” by Peter Loftus

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Transcript: Will They or Won’t They (Block the Abortion Pill)?

KFF Health News’ ‘What the Health?’Episode Title: Will They or Won’t They (Block the Abortion Pill)?Episode Number: 294Published: April 20, 2023

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

Mary Agnes Carey: Hello and welcome back to “What the Health?” I’m Mary Agnes Carey, partnerships editor for KFF Health News. I’m filling in this week for Julie Rovner, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, April 20, at 10 a.m. Eastern. As always, news happens fast and things might have changed by the time you hear this. So here we go. Joining us today by video conference are Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Carey: Rachel Cohrs of Stat.

Cohrs: Morning, everyone.

Carey: And Sandhya Raman of CQ Roll Call.

Raman: Good morning.

Carey: Let’s start with the current court action on mifepristone. The Supreme Court was scheduled to rule yesterday on a decision from the U.S. Court of Appeals for the 5th Circuit that rolled back FDA action since 2016, allowing patients to get mifepristone through the mail, authorizing prescriptions by medical professionals other than doctors, and approving the drug’s use up to 10 weeks into a pregnancy instead of seven. Supreme Court Justice Samuel Alito Jr, who’d previously set Wednesday as the deadline for the court to act, extended that stay until Friday, and the justices could certainly act before they choose to —hopefully not while we’re taping. But I wanted to get everyone’s thoughts on why do you think the court didn’t act yesterday? Joanne, can I start with you?

Kenen: I mean, presumably they’re still hashing it out. There’re probably two or three judges who are still thinking about it or discussing it with their colleagues, or colleagues who want to think they can persuade them to their side. I mean, there’s something internal. On the other hand, I mean, they didn’t originally give themselves a lot of time to consider a complicated and historic case. We know there’s an anti-abortion majority. We know they’re not crazy about medical abortions any more than they are about surgical abortions. But this has large implications about states’ rights and about the sort of integrity of the FDA. So they may just wanted to sleep on it. They’re human, but the two sides are battling for two or three in the middle.

Carey: So what does this signal about how they might rule? I mean, to your point about the split, the battle, what are the options? What do you — Sandhya, what do you think about what they might —

Kenen: Well, if it was slam dunk, we’d have had it.

Carey: That is true. That is true. It is not a slam dunk.

Raman: And everyone that I have talked to in the last few weeks on this is just that there are so many different options, different permutations, that it’s difficult even for people that are experts on FDA policy, like expert lawyers, experts on abortion policy, to just kind of like predict the nuances. You know, they could let the stay expire. They could send it back to the 5th Circuit. They could decide to hold arguments and let it expire or not expire. They could decide something different than the 5th Circuit. You know, there’s so many different ways that things could happen that I think it makes it difficult. And then yesterday, the other manufacturer of mifepristone, GenBioPro, also filed suit against the FDA. So now we have, since Dobbs, like five different lawsuits related to mifepristone and three of them, post-Dobbs, are related to the FDA in particular. And I think it just gets very, very complicated to make a decision, even if ideologically some people might align with one way versus the other, given all of these different permutations and that we still have that Washington case that is attacking another part of this. So it’s just complicated to get people to do something. And the fact that this case has been moving so, so quickly.

Carey: Could we be in the same place on Friday? Could we get another stay? Could the justices certainly ask for more time, and are there any thoughts about the probability of that actually happening? Rachel, what are your thoughts?

Cohrs: I think they can do what they want.

Carey: That’s true.

Cohrs: They gave themselves time once more, and I think obviously there’s a benefit to having some certainty and predictability for people, for providers, but certainly they could stay again.

Carey: So, Sandhya, you just mentioned the Washington state case. So while this Texas ruling is before the Supreme Court, a federal district judge in Washington state issued a ruling in a separate case that instructed the FDA to not alter the current availability of the drug in 17 states and the District of Columbia. And as you just mentioned, a manufacturer of the generic version of the drug — the company’s name is GenBioPro; they make the generic version of mifepristone — they’re arguing that if the FDA implements a court order suspending approval of the drug, the agency would deprive the company of its rights to market the drug without due process of law. And as I understand, this company is a major manufacturer of the generic version of the drug, right? So let’s talk a bit more about this confusion of these split rulings. I mean, what is the public to make of it? What’s the reaction with facilities that are providing this medication or doctors who want to prescribe it or just the general public? The person who might be interested in this situation is very confused. I mean, talk a little bit about how people sort through it and what this means for them.

Raman: So the suit that was filed yesterday about the generic, they make two-thirds of the mifepristone that is used in the U.S. So if they were unable to be manufacturing theirs based on a ruling that only allowed the name-brand version of the drug, that’s a huge percentage of the market that is gone, and more than half of abortions are done through medication abortion. So that’s one thorn in it. And I think that another is that we have all of these states that have been stockpiling the drugs — several that have been, you know, in case they don’t know what is happening with the ruling. Washington is one of them. And there’s still not clarity depending on what happens with these cases of, you know, will they be able to use what that they have stockpiled? And then we have other states like New York and I think California that have been stockpiling misoprostol as another way to — in case there’s a court ruling that doesn’t go in their favor — to just give patients in their states access to medication abortion. I think that there are so many different permutations that it’s very difficult for even folks that are confident that the rule may go a different way to know what to predict, just because we’re in such uncertain territory, from all of the different former FDA officials that have said, “You know, this is a very different situation. We don’t even know, after decades of experience at the FDA, like, how this would play out, what it would mean, whether we’d have to pull everything off the market.” How it would play out, it’s just a lot of unknown territory given all of the different things going on.

Kenen: Well, also, whatever they do now isn’t necessarily the end of the story, right? I mean, if the court issues a stay, it will still go through the courts and it presumably ends up at the Supreme Court again. If they issue a stay pending full hearing of the case, it’ll be going on for months more. But either they issue a stay saying the 5th Circuit ruling, which did not totally — the lower federal court banned the use of the pill; the appeals court limited it to seven weeks instead of the FDA has ruled it’s for 10 weeks. So if they uphold the 5th Circuit Court of Appeals, there would still be use, but it would be limited. If they put a stay saying, “Yes, it can stay legal in the states that allow it for now,” then it would still be legal in those states but we’d still be back discussing what is the Supreme Court going to do a couple of months from now.

Carey: And how — where is the drug industry on this? I mean, this would have sweeping ramifications.

Kenen: They’re horrified. One of you might know the number — was it like 250 companies signed the brief that you’re going to have a court decide what drug is safe and what drug is not safe, rather than the FDA? I mean, the pharmaceutical company fights with the FDA all the time, but they need the FDA and they know they need the FDA and they admit they need the FDA. You know, you have one voice in this country saying a drug is safe or a drug is not safe or a drug is safe under the following conditions.

Raman: There have been hundreds of the drug companies that have spoken out against it, and PhRMA [Pharmaceutical Research and Manufacturers of America] more recently also finally came out against it. It’s been pretty uniform in a way that I have not really seen in the past where there have been, you know, the drug companies, the various people that have been regulators, the folks that are in favor of abortion rights, then just advocates — and just very unified in this response.

Carey: Rachel, what is the impact of the drug industry’s weighing in in this manner? How could that shape the decision? Was there anything surprising in how they worked together on this? I know you’ve done some reporting on this area.

Cohrs: Yes. Yeah. So I think certainly them actually filing briefs with the court will kind of help drive home the ramifications of this, just on a much larger scale. I mean, we’re not just talking about abortion now. We’re talking about any medication that could be at all controversial. You know, we’re talking PrEP for HIV. You know, there are so many areas where companies genuinely are concerned about lawsuits and about judges who aren’t experts. So I think this uniform voice will drive home the larger impacts here beyond this one issue. And also, I think, the drug industry has significant resources to invest. And I think, it took a little while, but the trade groups PhRMA and BIO [Biotechnology Innovation Organization] have said that they are willing to invest, and they haven’t made any specific commitments, but certainly I think down the line there could be legal challenges. And now that they have put themselves out there, they certainly are a significant player in the space, with resources.

Raman: The drug industry is also a huge player in, you know, donating to various campaigns and lobbying on the Hill. And it’s definitely going to be — put increasingly different folks in a tight spot if they are receiving a lot of backing from the pharmaceutical industry and if they’ve spoken out in favor of restricting the drug. And it’ll be interesting to see kind of as it goes on what happens there with some of these folks.

Carey: Sure. Well that’s a perfect segue way because we have lawmakers on Capitol Hill are also weighing in on this. About 150 Republicans are urging the Supreme Court to uphold the 5th Circuit’s ruling, while more than 250 Democrats have urged the court to not prevent access to mifepristone. Are Republicans taking a political risk here speaking out? Because I know it’s been talked about on the podcast before, about the abortion rights opponents have some splits on how far to go on some of these restrictions on abortion. You know, Republicans didn’t really seem eager to engage when the decision came out, but now they are. What does that mean? What do you make of it?

Raman: We’ve had that delay first that, you know, a lot of Republicans did not even comment on the case, which was kind of interesting, given that, you know, after a lot of these decisions, we see a lot from both sides kind of weighing in. And I think when you look at some of these briefs, they say a lot of the similar talking points as before, which is something that you can kind of look to. But I mean, the conversation is still moving, even on the Hill. Yesterday, Robert Califf from the FDA was facing questions about mifepristone from different Republicans, from Cindy Hyde-Smith, who had agreed with the lower court decision, from Susan Collins, who was kind of against the decision as one of the Republicans who generally supports abortion rights. And I think it’ll be very interesting if this gets taken up by a committee that has jurisdiction over the FDA, which we have not really seen a commitment to. Energy and Commerce [Committee] Democrats have asked for something on this to come up. But, you know, under Republican leadership, I don’t know that that would necessarily happen. The only committee that is really committed to looking at this issue has been, like, Senate Judiciary, which with Democratic control is going to look a different way. And they don’t really have the jurisdiction over FDA in the same way as some of the other committees do. So I think that’ll be interesting to look at if that changes.

Kenen: There is a divide in the Republican Party about how far to go. I mean, some are for rape and incest exceptions, some are not. Some are for six weeks, some are for 15 weeks, some are for zero weeks. This is reflecting those divisions. It also depends on the individual lawmaker’s district. You know, if you come from an extremely conservative district and you are an anti-abortion absolutist, then you’re going to speak out on this. But we’ve noted they don’t really want to antagonize pharma either. So you’ve seen, I guess it’s 150ish — you haven’t seen all of them. It’s a complicated issue for some of them, given the competing interests, you know. Is abolishing all abortions in the United States of America your top goal? In which case you’re going to want to support the lower court. If you have a more nuanced view, where you’re worried about precedent for overriding the FDA, you have competing — I mean, there are very few abortion rights Republicans, but they don’t all want to draw the line in the same place.

Carey: So while we’re on the subject of Capitol Hill, let’s talk about the debt ceiling. We have a little bit of action there this week. Speaker of the House Kevin McCarthy unveiled his plan to raise the debt ceiling. McCarthy and many Republicans have said they don’t want to raise the debt ceiling without spending cuts. President Biden and many Democrats are pushing for a clean debt ceiling increase. So among its provisions, Speaker McCarthy’s plan would cut federal spending by roughly $130 billion, and that would take spending back to fiscal 2022 levels. Health-related provisions include new work requirements for Medicaid and food stamp recipients, and the package would also claw back unspent covid aid funds. And there’s a bit of a twist on the work requirement proposals of the past: States could opt to keep those that don’t comply with the work rules covered under Medicaid, keep them on the rolls. But if they do, the state would bear the full cost of that coverage and forgo the federal money for those enrollees, right? The proposal also requires states to make use of existing resources like payroll databases, state health and human service agencies, to verify compliance with a work rule when possible. There’s a lot to unpack here. It’s pretty clear that, I mean, House Democrats aren’t going to vote for this. Does the speaker even have enough votes in his own caucus to pass it? I think he can only lose like four.

Kenen: TBD. But I don’t think the conventional wisdom is that he has the votes. You know, it’s a starting offer, but they can change, you know, has to go Rules [Committee]. They’ll change — you know, they could change things.

Carey: It is a starting offer. But your vote is next week and it’s Thursday. OK. Rachel, what’s your take on this?

Cohrs: Yeah, I think it was a bit of a roller coaster this week, as some members of the Freedom Caucus were demanding wholesale repeal of the Inflation Reduction Act around midweek, and they certainly backed off from that, especially the health care portion. So I think that is worth noting, at least right now. Again, unclear if he has the votes, or if the speaker has the votes, and then obviously Senate Democrats aren’t going to go for it and President Biden isn’t going to go for this. So I think, like Joanne said, it is kind of an opening offer here. And again, there isn’t a lot on Medicare in here. So I think we just, you know, finally, after so much rhetoric and so much back-and-forth, have some sort of tangible starting point from Republicans here, which is significant.

Kenen: But, you know, as soon as they made that pledge that we’re not going to touch Medicare, meaning traditional Medicare actually, and we’re not going to touch Social Security, we all knew that, Oh, that means that it’s all going to go to Medicaid. So this is a big Medicaid hit. And work rules have been something the Republicans have embraced at least since the Reagan era, maybe even before, but certainly since the 1980s. A few states tried them or at least said they were going to impose them under the Obama administration. At that point, the administration didn’t approve them and the courts didn’t uphold them. But we have a different court now. So I think this court would uphold; that’s likely. But this is not acceptable for Democrats, nor is it meant to be.

Raman: And when we had the various states propose these and in some cases implement them during the Trump administration, every single one of them was struck down by the court once, sometimes twice. You know, we had Arkansas, we had New Hampshire, we had Kentucky, we had Michigan. Every single time the judge at hand was, you know, “This is going against the function of Medicaid,” which — historically we’ve had work requirements in some of the other programs, but the way the Medicaid statute is written, it has been difficult to find a way to keep those in place. So if they were able to get that past, I mean, even the House, which seems like is a, is a question mark, I mean — whatever could get through would absolutely face court battles from some of the same folks that challenged them during the Trump administration.

Kenen: But I think the only one that actually went into effect was Arkansas. And in addition to it being thrown out by a court, it also just didn’t work. The mechanism didn’t work. It became really hard for people. The verification that you’re working, which this proposal actually addresses, that Mary Agnes just alluded to that, the verification was extraordinarily cumbersome. I mean, you had like lots of poor people in Arkansas — and rural Arkansas don’t have access to Internet — and you only had a few hours a day where you could use the portal and you have to leave work to go to the local library to prove that you were working. I mean, it was just — forget the ideology of it — the mechanics didn’t work, and people were thrown off even though they were compliant. And but this [is] just like a deep philosophical divide between the two parties, and they have compromised, and back in the Clinton years they compromised on welfare, what’s now called TANF [Temporary Assistance for Needy Families]. There’s work requirements for SNAP, for what we used to call food stamps. But Medicaid has been a red line for Democrats, that this is an entitlement based on health; it’s not like you deserve — some people deserve it and some people don’t. It’s been a philosophical, ideological, you know, something that Democrats feel very strongly about.

Cohrs: Oh, I just want to jump in on the covid money as well — much smaller deal, fewer impacts on patients — but it has been kind of interesting and over the last couple of weeks that the Biden administration has rolled out some new programs that cost quite a bit of money, as there’s this horizon, this call for Congress to claw back unspent covid funds. I mean, they’re spending $5 billion now on developing vaccines and therapeutics, $1 billion on vaccine access, when they said they didn’t have any money. So it’s just kind of interesting that, you know, when these funds are committed to a program legally, then Congress can’t claw them back. So I’m curious to see what else we’ll see as these negotiations solidify.

Carey: All right. We’ll keep our eye on it. And I want to just check in briefly on the Senate side. I know we’ve discussed these issues on the podcast before. The Senate Health, Education, Labor and Pensions Committee has been working on legislation focused on drug prices and pharmacy benefit managers. This morning we have a framework introduced from the Senate Finance Committee. It’s with Sen. Wyden, the chair from Oregon, who’s a Democrat, and Sen. Mike Crapo, Republican from Idaho, that also seeks to address PBMs in the prescription drug supply chain. We also have the moving, or maybe not moving, but introduce legislation, anything new there on insulin prices with Sen. Warnock and Sen. Kennedy to cap the out-of-pocket price at $35. Any movements there in the Senate, any insight you could offer?

Cohrs: On the Senate Finance [Committee] side, that is a very significant development, that they’ve decided to get in on the fun this week of putting together a package, just because their committees do have jurisdiction over so much federal spending. And Sen. Wyden has been involved in this issue. He’s put out — I found a package of bills from 2019, and, you know, he’s been on this issue a long time. So I think his team has proven they can craft big-picture, very impactful policy with the Inflation Reduction Act. So I think that’s certainly something to watch with that much federal spending on the line. And on insulin, you know, Sen. Schumer this week has committed to have some sort of insulin pricing provision in whatever package might come together — it’s still pretty amorphous — but it’s unclear what that’s going to look like. There is another proposal from Sen. Collins and Sen. Shaheen, two much more senior members of the caucus, and that mechanism works differently. For patients, it would look pretty similar. But on the back end, for insurers, for drugmakers, both of those programs would work differently. So they haven’t sorted that out yet. HELP hasn’t even picked a date for their hearing and formally announced it yet. So we are in early stages, but there’s certainly a lot swirling around.

Carey: Absolutely. And we’ll keep our eye on all of that as well. So I’d like to also chat a little bit about some ACA developments that happened this week. President Biden recently announced that hundreds of thousands of immigrants brought to the United States illegally as children will be able to apply for Medicaid and the Affordable Care Act’s health insurance exchanges. This allows participants in the Obama-era Deferred Action for Childhood Arrivals program, also known as DACA, to access government-funded health insurance programs. You can expect pushback from conservative leaders of states that have been reluctant to expand Medicaid, possibly also pushback from Republican members of the Hill on this provision. And then, in other ACA news, the administration has finalized new rules that are aimed at making it easier for consumers to sign up for ACA plans, in particular those who are losing their coverage through Medicaid or the Children’s Health Insurance Program. The Centers for Medicare & Medicaid Services, also known as CMS, will also give state marketplaces the option to hold a special enrollment period for people who lose their Medicaid or CHIP coverage. What could this possibly mean for enrollment in the program, right, to making it easier for DACA participants to enroll in the ACA or people losing their coverage through CHIP or Medicaid? I think it’s about 16 million people now in the program. Does this build more support for it? Are Republicans going to engage against it? Do they think that’s simply a losing battle because they’ve never agreed on an alternative?

Raman: I mean, right now, we’ve had historic levels of people in Medicaid and CHIP just because states have been unable to unenroll them from coverage during the public health emergency for covid. And now that states are starting to recheck their rolls and see who’s still eligible, who’s not eligible, we’ve been expecting just, you know, a big drop in different people that would be either getting uninsured or maybe moving to a different type of plan with a private or the exchanges. And I think it’s been something that, you know, states and the federal government have been working on for the entire time of just, you know, different ways to make sure that that drop-off in the number of uninsured folks doesn’t skyrocket as states are going through this process. And so I think the timing is important in that, you know, you’re trying to counteract the drop. And HHS [the U.S. Department of Health and Human Services] has been touting, you know, the high levels of uptake in the ACA and just like the low uninsured rate and this has been something they’ve just kind of been pushing, you know, month after month. This has been something that has been like a big achievement for them. And so now really like push comes to shove to say that, you know, it doesn’t drop off dramatically if you want to continue touting some of these achievements and making sure that people don’t drop off just because the emergency is ending and that guaranteed coverage isn’t there.

Kenen: So there are multiple issues in the question that are exposed, the DACA, which —

Carey: Of course it can’t be just one question I have to ask four at once.

Kenen: The DACA, which is also known as the Dreamers, Biden is trying to cover them. Democrats have been trying to give them legal status and got nowhere. In fact, they’re probably further away from that than they were five or six years ago. But to get them health coverage is something the Democrats — it’s like the least they can do to this population. But I can’t imagine there’s not going to be a political and/or a legal fight from the states who are going to have to pay for their share of it, right? I mean, Medicaid is a state-federal joint expenditure, and the states that don’t want to cover these people will well resist or sue. Or, I mean, everything ends up in court; I would imagine this will, too, or baked into the debt ceiling — you know, one more thing to fight about with the debt ceiling. So that’s one issue. I mean, the other issue is this unwinding of this huge Medicaid population. Most of these people are going to be eligible for some kind of coverage. Some of them are still going to be eligible for Medicaid. Some of them are going to be eligible for very good deals for sort of low-income working people on the ACA. And some have jobs that they can get insured through — theirs or a partner or a family member. But really, the only ones who are ineligible for anything would be those in the remaining Medicaid gap states. But that’s like theoretically, if we did everything right, the only people that would be ineligible are the Medicaid gap population, which is now down to about 10 states, assuming North Carolina, you know, finalizes their approval or, you know, enacts their expansion. But like, that’s the perfect world, and we don’t live in a perfect world. I mean, some of these people are going to get lost in the shuffle. And in fact, maybe several million; their estimates are like maybe 6 million, you know, no one knows. But, you know, our health care system is complicated. You know, getting a letter in the mail saying, you know, “Sayonara, Medicaid,” is not all of them will know how to negotiate new coverage even when they’re eligible, and we’re going to have to do a really good job of helping them. And that has to be from the federal government, from the state governments, from the health system itself, from advocates, from Congress. You know, everyone’s going to have to pitch in to get these people what they’re eligible for. And I don’t see that as an overnight success story. I think that there are people who should be covered and can be covered who won’t be covered. Eventually we’ll probably catch up and most of them enrolled. But I think that some of them have periods of uninsurance.

Carey: It’s absolutely a major undertaking. I know we’ll all be watching closely. OK, that’s the news for this week. Now it’s time for our extra credit segment. That’s when we each recommend a story we read this week and think you should read it too. As always, don’t worry if you miss it. We’ll post the links on our podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device.

Kenen: I actually want to read the first sentence of this piece. This is a guest essay in The New York Times by Amy Silverstein. She’s a heart transplant recipient. She’s, I guess, about 60 now, and she’s about to die, not because her heart, her transplanted heart is failing — she writes about how she kept that in pristine condition — but because she’s got cancer. And it’s called “My Transplanted Heart and I Will Die Soon,” and it begins, “Today, I will explain to my healthy transplanted heart why, in what may be a matter of days or weeks at best, she — well, we — will die.” And in addition to being just a heart-tugger, I did not know a lot of what she explores about transplant medicine, that we think of transplants as medical miracles — and they are; you know, she had like an extra 35 years of life — but they’re also, transplant medicine itself hasn’t really, according to what she writes, transplant medicine itself — the drugs, the care they get, these heavy-duty drugs haven’t improved in 40 years. While she has a healthy heart, she has metastatic lung cancer because of these drugs. The medical care around transplant can be quite dangerous. And I knew nothing about that, and I’ve covered health for a long time. So it’s a tragic story and it’s also a scientific failure or a medical system or a medical research failure story that I hope a lot of people who have the power to change it read.

Carey: Sandhya, what’s your extra credit?

Raman: So my extra credit is from ABC News. It’s called “Puerto Rico’s Water Supply Is Being Depleted, Contaminated by Manufacturing Industry on the Island, Experts Say.” It’s a triple byline from Jessie DiMartino, Lilia Geho, and Julia Jacobo. And I thought their story was really interesting because it looks at the effects of the manufacturing industry on the water supply in Puerto Rico. The manufacturing there is, in Puerto Rico, is really high because there used to be a tax incentive that’s now lapsed to create a huge boom in manufacturing in the ’60s and ’70s. And kind of looking at the impacts of that, and over time and to the environment, and pharma manufacturing in particular, is 65% of what has been the industrial groundwater withdrawals. So in areas that rely heavily on groundwater on an island, this is felt especially hard. And so they go through a lot of the implications of some of that and how the manufacturing affects it, especially in an island with a finite water supply.

Carey: Rachel.

Cohrs: Mine is, the headline is, “‘I Hate You, Kathie Lee Gifford!’ Ozempic Users Report Bizarre Dreams,” in The Wall Street Journal and by Peter Loftus. Our newsroom has been covering the weight loss drug explosion this year, and I think this story was just so colorful and just a great example of reporting on the side effects that emerge when so many people are interested or want to take a drug. And I think there is certainly a public service to people understanding what they’re getting into and just hearing from all sorts of people, because certainly there are agencies who are supposed to be doing that. But I think there’s also just a lot of buzz that’s fascinating. The writing was just so rich and bizarre. And yeah, it was a great read and a great illustration on it, too.

Carey: Well, speaking of weight loss and getting fat out of our bodies, my story is from The New York Times, called “A Beauty Treatment Promised to Zap Fat. For Some, It Brought Disfigurement,” by Anna Kodé, and I hope I’m pronouncing your name correctly. You might have heard or seen all these ads about the treatment called CoolSculpting. It uses a device on a targeted part of the body to freeze fat cells. Patients typically undergo multiple treatments in the same area, and in successful cases, the cells die and the body absorbs them. “But for some people,” Anna writes, “the procedure results in severe disfigurement. The fat can grow, harden and lodge in the body, sometimes even taking on the shape of the device’s applicator.” The manufacturer says this is a rare side effect, but a Times investigation that drew on internal documents, lawsuits, medical studies, and interviews indicates the risk to patients may be considerably higher. So that’s our show. As always, if you enjoyed the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left a review; that helps other people find us too. Special thanks, as always, to our ever-patient producer, Francis Ying. And as always, you can email us with your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me @maryagnescarey. Rachel?

Cohrs: @rachelcohrs.

Carey: Joanne?

Kenen: @JoanneKenen.

Carey: Sandhya.

Raman: @SandhyaWrites.

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

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

The abortion pill mifepristone is now ground zero in the abortion debate. Late Wednesday night, the 5th Circuit Court of Appeals said the drug should remain on the market but under restrictions on distribution that were in effect before 2016, which ban prescribing by mail or by telemedicine. The restrictions would make it even more difficult for patients in states where abortion is illegal or widely unavailable.

The decision comes in response to a ruling last week out of Texas, where a federal judge, as was widely expected, found that the FDA should not have approved the drug more than 22 years ago and ordered it, effectively, unapproved.

Complicating matters further still, in a separate case filed by 18 attorneys general in states where abortion is largely legal, last week a federal district judge in Washington state ordered the FDA not to reinstate any of the old restrictions.

This week’s panelists are Julie Rovner of KFF Health News, Victoria Knight of Axios, Shefali Luthra of The 19th, and Sarah Karlin-Smith of the Pink Sheet.

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Sarah Karlin-Smith
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Victoria Knight
Axios

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Read Victoria's stories

Shefali Luthra
The 19th

@Shefalil

Read Shefali's stories

Among the takeaways from this week’s episode:

• A late-night decision by the appeals court preserves access to mifepristone while the legal battle continues. But it also resurrects outdated limitations on the drug, meaning mifepristone can be used only up to seven weeks into a pregnancy, among other restrictions.
• While it is expected that the U.S. Supreme Court will ultimately decide the drug’s fate, some providers and state officials are rushing to stockpile it. Cutting off access to the abortion pill puts extra pressure on clinics in states where abortion remains legal, which are also serving women from so-called prohibition states and could see an influx of patients as mifepristone becomes difficult — or impossible — to get.
• Republicans largely have remained quiet about the ruling overturning mifepristone’s FDA approval. While many in the party support banning the drug, they likely recognize the political risks of broadcasting that stance. Meanwhile, the Biden administration moved to strengthen privacy protections for patients and providers related to abortion, offering some reassurance to those who fear they could be prosecuted under their home state laws for seeking abortions elsewhere.
• As Southern states have whittled away at abortion access, Florida, with its 15-week abortion ban, had emerged as a hub for patients across the region. This week the state moved to restrict the procedure to six weeks, a change that could send many patients scrambling north to states like Virginia and New York for care. And in Idaho, a new law makes “abortion trafficking” — or transporting a minor to have an abortion without parental consent — a crime.
• Congress is exploring new drug pricing measures, particularly aimed at increasing transparency around pharmacy benefit managers and capping insulin costs. Lawmakers are also watching the approach of the debt ceiling threshold; in the mix of budgetary pressure valves are Medicaid and, potentially, work requirements to receive Supplemental Nutrition Assistance Program benefits.
• Congress continues to show little appetite for addressing a different, intensifying public health crisis: gun violence. A new poll from KFF shows startlingly high numbers of Americans — especially people of color — have directly experienced gun violence and live with that threat every day.

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

Julie Rovner: The Washington Post’s “To Comply With a New Sesame Allergy Law, Some Businesses Add — Sesame,” by Karen Weese.

Shefali Luthra: KFF Health News’ “For Uninsured People With Cancer, Securing Care Can Be Like Spinning a Roulette Wheel,” by Charlotte Huff.

Victoria Knight: The Washington Post’s “Research With Exotic Viruses Risks a Deadly Outbreak, Scientists Warn,” by David Willman and Joby Warrick.

Sarah Karlin-Smith: NBC News’ “Conspiracy Theorists Made Tiffany Dover Into an Anti-Vaccine Icon. She’s Finally Ready to Talk About It,” by Brandy Zadrozny.

Click to open the transcript

Transcript: The Confusing Fate of the Abortion Pill

KFF Health News’ ‘What the Health?’Episode Title: The Confusing Fate of the Abortion PillEpisode Number: 293Published: April 13, 2023

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

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent at KFF Health News. And I’m joined by some of the best and smartest health reporters in Washington. We are taping this week on Thursday, April 13, at 10 a.m. As always, news happens fast —really fast this week — and things might have changed by the time you hear this. So here we go. We are joined today by video conference by Victoria Knight of Axios.

Victoria Knight: Good morning.

Rovner: Sarah Karlin-Smith of the Pink Sheet.

Sarah Karlin-Smith: Hi, Julie.

Rovner: And Shefali Luthra of The 19th.

Shefali Luthra: Hello.

Rovner: Well, no interview this week, but spring is busting out all over with health news, so we will get right to it. We will begin in Texas with that court case that we’ve been saying for the last few weeks we hadn’t gotten a decision in. Well, we got a decision last Friday night around dinnertime and then very early this morning — that’s Thursday — we got an appeals court decision, too. But let’s take them one at a time. Last Friday night, in an opinion that was shocking but not surprising, as many people put it, Trump-appointed federal District Judge Matthew Kacsmaryk effectively rolled back the Food and Drug Administration’s 22-plus-year-old approval of mifepristone; that’s the first of two pills used for medication abortion early in pregnancy. Literally within the hour, federal District Judge Thomas Rice in Spokane, Washington, ruled in a separate case — brought by a group of about a dozen and a half state attorneys general — basically the opposite, ordering the FDA not to alter the current availability of the drug. Judge Kacsmaryk in Texas very kindly stayed his stay until this Friday to allow the Biden administration to appeal to the also very conservative 5th Circuit Court of Appeals. And in the wee hours of today, Thursday, an appeals court panel ruled that, while this lawsuit proceeds, mifepristone can continue to be sold, but only under the extremely onerous restrictions that were in effect until 2016. Shefali, where does that leave us? It’s kind of a mess, isn’t it?

Luthra: It is a huge mess, and the implications will be really significant. In particular, the 2016 restrictions on mifepristone don’t allow telemedicine. You have to go in person to a doctor to get the medication, and you can only use it up to seven weeks of pregnancy, when all of the evidence we have, including from the World Health Organization, says 10 weeks, sometimes maybe even 11. And I mean, we know realistically that people are taking mifepristone far later in pregnancy now because they can’t access legal abortion. And what this is going to do if it takes effect is it’s going to put a real strain on abortion clinics in states that have become destinations, right? The ones that are seeing so many out-of-state patients that largely do medication abortions because it’s easier, it’s faster, it pays a little bit better — all of these reasons that you do it —and that have really come to rely on telemedicine: Either they will have to take much longer to do this process and only do it for a handful of the patients they’re seeing, or they’ll switch to what we’ve talked about before, the misoprostol-only regimen, which is more painful, which is less effective. Still very good at terminating a pregnancy, but has a higher failure rate. And what clinics have told me is very often they expect that patients, when they hear that these are their options, will opt for a procedural abortion instead because that they know will absolutely work and they have to go home. They don’t worry about coming back to the clinic and worrying that they need an abortion again.

Karlin-Smith: I just want to put in the caveat that, you know, off-label use, which is where doctors prescribe a drug for use not approved for FDA, is something they do have sort of the discretion to do in practice of medicine once the product’s available. So the rollback is significant, but practically a lot of doctors will have the flexibility to still treat patients up to the longer timeframe. And people have pointed out this morning that, actually, many doctors were doing that prior to FDA formally expanding the approval.

Luthra: And to your point, many states have been stocking up on mifepristone in particular, and so have many abortion clinics, and they plan to use it as long as they can. The real challenge, I think, will be if there are supply issues at some point or other sorts of decisions from the Supreme Court, etc., or enforcement actions that essentially don’t allow telemedicine anymore.

Rovner: What it looks like the 5th Circuit has done is made it much harder for people in states where there are abortion bans to go to other states or to not go to another state but get the abortion pill, because they’ve banned it by mail; they’ve basically stopped in its tracks what we’ve been talking about for weeks — the ability of pharmacies to start to distribute it — because until 2016 you had to go — the doctor had to physically hand you the pill, which is what we are back to, and there have to be three visits in order to complete a medication abortion. These were all sort of the pre-2016 requirements. And the big question, though, is in Washington state, the requirement was that the FDA not change any of the relaxed restrictions. And now the 5th Circuit has said, yes, you will. So this still is on a fast track to the Supreme Court, right?

Luthra: It feels very like this is going to be decided by the Supreme Court. I mean, I wouldn’t be surprised if we hear about an appeal today. I wouldn’t be surprised if we hear about it tomorrow. It feels like really this could have changed between us taping and the podcast releasing.

Rovner: I think that’s entirely possible. So one of the things we thought Judge Kacsmaryk might do was order the FDA to basically restart its approval process for mifepristone, since his reasoning for rescinding essentially the drug’s approval is that the FDA violated its own procedures. Ironically, this decision came in a week when the FDA did withdraw the approval of a drug, a medication to prevent preterm birth called Makena. Sarah, what’s this drug and why is the FDA pulling it off the market? And this is how it’s supposed to work, right?

Karlin-Smith: Yes — supposed to work maybe is a stretch, depending on how some people felt about Makena; they felt it took way too long for FDA to withdraw it. So two sides of a coin, I suppose. But after a very long process, FDA finally pulled a drug that is given to women with the idea that it might help them deliver later, once their baby was full term, and prevent complications that come from having a premature birth. Unfortunately, over the years, as more clinical research was done on the drug, it appeared that it was not actually doing that. And as like all drugs, there are some side effects. And FDA basically ended up deciding, you know, absent any benefit, all you have is risk and this drug should not be pulled off the market. So it was finally pulled off the market after quite a lengthy process this week, right? It was still this week, or was it — no, it was last week.

Rovner: I think it was last week.

Karlin-Smith: Time. Time —

Rovner: Time is a very flat circle right now.

Karlin-Smith: Yeah, and so unfortunately it was really the only approved product that could possibly prevent preterm birth. And FDA really tried to recognize that and understand that people would be frustrated without options. But they tried to really emphasize the point that having an ineffective option is not the answer to that problem. The answer there is sort of push for more research on other products or even on this product to figure out if there’s a population of women it might benefit.

Rovner: So I wanted to mention that, because obviously the mifepristone ruling has the impact to affect much, much more than just abortion drugs. Individual drug companies are, to use the vernacular, freaking out about the idea that they could spend millions of dollars to shepherd a drug through clinical trials and the FDA approval process, only to see it banned because some small group of people object to it for some non-medical reason. Sarah, you cover the FDA. Is this freakout warranted right now?

Karlin-Smith: I do think most people think it is. And, you know, even in my preliminary look at what the 5th Circuit did this morning, I think that freakout is still going to continue because they seem to still give like this wide breadth that would allow many people to have the ability to challenge FDA approval decisions for any drug and then let judges weigh in who may not have the expertise and based on the science and all that other stuff that FDA has. So I think as this case has proceeded there’s still this underlying threat to the FDA’s authority and how they make decisions. Again, in the Texas case, he wasn’t trying to push it back to FDA and say, “OK, FDA, you go review this drug and decide again whether it needs to do it,” and then, you know, set them up for a Makena-like process where they would have to go through it. You know, they were trying to fast-track and overrule FDA’s authority. And if you read some of the details of the brief, you can really understand why it freaks out pharma and the FDA so much, because you can just tell how little the judge gets about how drugs are approved, the science, the regulatory process, and so forth.

Rovner: And basically that you have judges who are making medical and scientific decisions for which they are observably not qualified.

Karlin-Smith: Right, and I mean if nothing else industries likes stability, they like predictability, so there’s just this element of incredible unpredictability when you would have all these judges and potential legal cases throughout the country that would make it hard for them to deal with — and figuring out how to defend their products.

Rovner: So the FDA is obviously in an impossible situation here. They cannot satisfy both the Washington decision and the Court of Appeals decision because one says you can’t roll it back and one says you have to roll it back. Do we have any idea what the FDA is going to do here?

Luthra: I don’t know that we do. I mean, the Biden administration has said that they will follow the court orders, but the court orders are in conflict. So it seems like there should be some more clarity, perhaps, that we get. We, as of taping, haven’t gotten any statement from the president or the vice president or HHS, so we’ll keep an eye out and see if they have even just words of wisdom to offer about what this means or how they feel about the decision. But at this point, a lot is still quite confusing.

Rovner: So the Biden administration did take other action on abortion this week, in some separate steps. It announced Wednesday a series of new privacy protections for women and providers seeking or giving reproductive health care. How big a deal are these new rules, which sort of expand the HIPAA privacy rules? And why did it take them almost a year to do this? Hadn’t they been talking about this like right after the Dobbs ruling?

Luthra: They had been talking about this for a while. And what they said was that they believed that the guidance they had given to providers was sufficient to protect patient privacy. That has clearly not been the case, because we have continued to hear from people seeking abortions and from the health care providers giving them that they do not feel safe, right? They constantly have this fear that if I put something in someone’s medical record about an abortion, someone else might see it and it could get reported. So this should make that very clear beyond the guidance that was given out last summer — should make very clear that if you get an abortion, your doctor does not have to and should not tell any law enforcement about what happened. I think this has the potential to be really significant because one thing that we hear constantly from the people who are traveling out of state is they are terrified that they are breaking the law and that someone is going to find them, even though —

Rovner: That they’re breaking the law of their home state.

Luthra: Mm-hmm. Even though, of course, the home state laws do not criminalize the people who are seeking abortion.

Rovner: Yes. Well, I want to turn to the politics before we leave all of this. Democrats at all level of government were quick to decry this decision as wrong, anti-democratic, small d, and various other things. Republicans were a lot slower to react. How big a problem is abortion becoming for the Republican Party? They seem to be getting even more split on, “Gee, we thought that maybe overturning Roe was what we wanted and we were going to leave it at that.” And apparently anti-abortion activists are not leaving it at that.

Luthra: I mean, I think a great example of how Republicans are trying to navigate this problem is Congresswoman Nancy Mace, who, we may all recall, the day that Roe was overturned, put out a statement, like so many Republicans, saying that this was a great decision, very good for the country, the right step forward — and has since then tried very deliberately to walk away from that and to recalibrate her image on abortion and was one of the ones to come out this week and denounce the opinion from the District Court in Texas. Republicans who are willing to praise the decision in particular to take medication abortion off the market or to further restrict it, which is so unpopular, are finding themselves in a really tough spot. This is a winning issue for them and all they can really hope, and what we saw in the midterms, is to not talk about and to try and change the subject to something else.

Knight: I think important to note also that there were a good number of Republicans in Congress — think it was 69 — that signed on to an amicus brief both supporting the original lawsuit, this Texas lawsuit, and then also this decision when it came out.

Rovner: Right. This is an amicus brief to the Court of Appeals urging them to uphold the original decision.

Knight: Yeah. There were two amicus briefs , and a good number of congressional Republicans. — yeah, first for the original court case and then for the Appeals. But it was very noticeable that most of the Republican offices did not issue any kind of statement when this decision came out last week. So they’re fine supporting, putting documentation forward, supporting it, but they’re not broadcasting it, if that makes sense. And so I think that was very telling. It really was only Sen. Cindy Hyde-Smith, who is the Senate lead of the Pro-Life Caucus, that put something out. But it was very quiet among the rest of the Republicans, yeah.

Rovner: I noticed with that amicus brief, it’s like, OK, they’re going to say on the down-low to the anti-abortion activists, “We’re with you, but we really don’t want to publicize this because it’s not terribly popular with a lot of people.”

Luthra: To build on that, one example of someone who is really trying to walk that line and seems like is maybe facing challenges is Ron DeSantis, right? The person who did this compromise ban last year, the 15-week abortion ban, and now has clearly realized that if you want to be a nationally prominent Republican with support from the very powerful anti-abortion movement, you can’t do that; you need to be more overt in your disapproval of abortion and willingness to restrict access. But at the same time —

Rovner: Well, you’re anticipating my next question, which is that there is other abortion news this week. And in Florida, the legislature seems like it’s on the cusp of approving a six-week abortion ban to supplant the 15-week abortion ban it passed last year. And the aforementioned governor DeSantis says he will sign that if it comes to him. But Shefali, you’ve written about this. This could impact a lot more than just the people of Florida, right?

Luthra: I think it’s really important to note that Florida is the third-biggest state in the country and currently the biggest state in the eastern south part of the country where abortion is legal, even if it is only available up to 15 weeks. I have been to the clinics in Florida. It is stunning how crowded they are. There are people coming from all over the South. People are working until midnight to try and see every patient they can. And without Florida, the options are North Carolina and South Carolina. South Carolina clinics, there are very few of them, and they don’t go very far, not because of current state laws, but just because of the providers in the state. North Carolina is also looking likely to have some kind of abortion ban passed this year and again has way fewer clinics than Florida. If Florida is banning abortion after six weeks, a very, very large chunk of the country is going to be almost entirely displaced. The math just doesn’t really work. And we don’t know where people will be able to get abortions other than traveling, frankly, to Virginia, to D.C., to New York, and to all the places that so far, data shows, haven’t been as affected by out-of-state travelers.

Rovner: And of course, with the Court of Appeals decision basically saying that you can’t mail the abortion pills and that you can’t do it by telemedicine, I mean — which is not to say that people aren’t going to continue to get them by mail. It’s just that it won’t be FDA-sanctioned the way it was going to be. So Idaho is also making abortion news. This this feels like an afterthought, even though last week it seemed like a big deal. They have enacted a bill there creating the crime of abortion trafficking, which is the act of any adult transporting a minor for an abortion without her parent’s consent. Now, in the late 1990s and the early aughts, Republicans in the U.S. Congress tried unsuccessfully to pass something called the Child Custody Protection Act, which would have criminalized taking a minor across state lines for an abortion. But Idaho can’t do that. Only the federal government can regulate interstate travel. So this Idaho law just applies to the in-state portion of the trip. But it could still be a big deterrent, right? Unless you live right on the border. If you’re trying to take somebody out of state, you’re going to have to do part of it in state.

Luthra: I mean, of course. And I mean, Julie, I wanted to ask you about this because this is not actually a new kind of restriction. There are a bunch of states that have passed these, quote-unquote, “child trafficking laws” that restrict minors traveling out of state for abortion. Idaho is the first one to do it post-Dobbs. But for some reason, the anti-abortion movement has always had far more success in restricting access to minors. I think we’re all paying more attention now because we realize that this could in fact be the first step toward that thing that Justice Kavanaugh said would not happen, right? The larger-scale restriction of travel out of state for abortions.

Rovner: Yes. Restricting abortion for minors has been sort of the soft spot for the anti-abortion movement, really from the very beginning, because even people who consider themselves in favor of abortion rights, as we’ve seen this year with books — you know, parents are really like, “We want to be in charge of our daughters, and if my daughter needs my permission to get her ears pierced, she should need my permission to get an abortion or, God forbid, travel out of state or get contraception.” This is actually — it’s the minor issue that’s the reason that the Title X, the Family Planning Program, has not been reauthorized by Congress since 1984, which was before I started covering it. Oh, it’s my favorite piece of reproductive health trivia, because every time Congress tried to do it they got hung up over this question of should minors be able to get contraception without their parents’ approval. It is a continuing thing, but I think Idaho probably got more attention because they call this “abortion trafficking,” so we have a new law. All right. Well, there actually is other news this week that does not have to do with abortion. Congress next week will return from its two-week Easter/Passover break. And apparently at the top of the agenda in the Senate is a bill focusing on drug prices and particularly on pharmacy benefit managers. Even the Republican-led House is looking at PBM legislation. Sarah, remind us, what are PBMs and why are they so very unpopular among both Democrats and Republicans?

Karlin-Smith: So PBMs are companies contracted by your health insurance company or now, at this point, often owned by your health insurance company, that administer your pharmacy benefits, and they create the formularies that decide what drugs are covered and how much you are going to pay for them. And then they negotiate deals with pharmaceutical companies to try and lower the prices of drugs. And they also have to work with the pharmacies. So they’re called middlemen, often in a not very nice way. The drug industry has definitely tried to paint them as the key reason prices are too high, saying they give them discounts but they’re not passing them on to patients. It’s a bit more complicated than that. PBMs essentially say they do pass on that money to patients in the U.S. system but it ends up lowering everybody’s premiums, so not necessarily the person who’s paying for the high-cost drug. Of course, it’s a lot more complicated, because this is an industry, I think, surrounded by a lack of transparency. So it’s been hard for people, I think, to verify who’s getting that money and is it all really going to patients? And then, like I mentioned, this consolidation with health insurance companies, with parts of the pharmacy system as well, has started to raise a lot of kind of antitrust concerns and, again, that they may not be working in patients’ best interests.

Rovner: And a lot of this legislation is about transparency, right? It’s about sort of opening the black box of how PBMs set drug prices and negotiate with drug companies and pass these things along to insurers. I see you nodding, Victoria.

Knight: Yeah, and there’s a lot of different bills floating out there. There’s some that have passed out of committee in previous Congress that passed out of committee again, most notably a Senate Commerce bill — Chuck Grassley and Maria Cantwell — and that just passed out of committee, and that would implement some transparency measures, also ban the practice of spread pricing. There is some talk that Schumer may put a health package on the floor sometime soon, and so PBMs are going to potentially be a big part of that. There’s also supposed to be a markup sometime this month out of the Health, Education, Labor, Pensions Committee, where they also are talking about PBMs. So it’s interesting that there is a real movement on both sides of the aisle, also in the House, on PBMs. So they want to put some blame on high drug prices on someone. And right now it seems to be PBMs.

Rovner: And it looks like they’re going to go after insulin again, too, right? In the bill that passed last year they managed to cap insulin costs at $35 a month, but only for people on Medicare. So I guess this is the attempt to come back and require lower insulin prices for others. We will point out that many of the companies have voluntarily lowered some insulin prices, but looks like Congress not done with this yet, right?

Knight: No, it’s not done with it yet. Bernie Sanders is apparently going to haul some insulin execs in to have to testify, even though some of them have committed to lowering prices. And it’s also mentioned in the potential Schumer package, that $35 cap for everyone is supposed to be a part of it. And there’s also a lot of insulin $35-cap bills floating around. There is some Republican support in the Senate for that. There were some Republicans last year that voted for that. But I think the House will be the bigger issue, because there doesn’t seem to be as much Republican support in the House for a cap that extends to everyone.

Rovner: Yeah, but I mean, when we said sort of back in January that there might be some things that they could do on a bipartisan basis, it sounds like we’re starting to see some of them — now that it’s spring — blooming. So anything else that you are looking for this next session between, you know, Easter and Memorial Day?

Knight: I think also, I don’t know how much people are paying attention to this, but there is going to be one of those select subcommittee covid hearings next week and they’re bringing in some intelligence officials to talk about covid origins. So I think this is the first hearing with actual, like, intelligence officials. So I think it’ll be interesting to see what comes out of that. And obviously, there’s a lot of talk around, like, that practical policy implications are that Congress could kind of restrict NIH [National Institutes of Health] funding or how NIH gives out research funding because of all this talk around gain-of-function research in regards to covid origins. So I think that’s what we’re watching for rather than just the rhetoric around it, like what are the actual — how could it play out in regards to NIH funding? And then of course, can’t forget debt ceiling negotiations and work requirements are still very much being talked about.

Rovner: For Medicaid.

Knight: For Medicaid and also SNAP [Supplemental Nutrition Assistance Program] potentially. So there was reporting this morning from Punchbowl saying that work requirements are very much still in the proposals that are being kicked around. So, another thing to watch.

Rovner: May is traditionally a very busy month on Capitol Hill, particularly May of the odd-numbered year, the first year of a Congress, so I imagine we’ll see a lot. One last thing I want to talk about this week, and we haven’t talked about it for a while, but the toll of gun injuries just continues to mount. In the past three weeks, we’ve had mass shootings with multiple fatalities in Tennessee, Kentucky, and Florida. In Louisville, in fact, the mayor, who himself survived a mass shooting last year, lost a close friend in the shooting this week. So it’s not all that surprising that a new poll from my colleagues over the editorial firewall at KFF found that gun violence is so common that more than one in five Americans say they have personally been threatened by a gun. Nearly as many say a family member has been killed by a gun; 17% say they have personally witnessed someone being shot. The numbers are even worse for people of color. Nearly a third of Black adults have witnessed someone being shot, and more than a third have lost a family member to gun violence. We seem to have acknowledged finally that gun violence is a public health problem. Yet that hasn’t brought us any closer as a society to solving it. I mean, we were just talking about the things that Congress might be looking at in terms of health care in the spring. But gun violence isn’t really one of them, is it?

Knight: Yeah. I think you’ve seen from the Biden administration and acknowledgment from both sides of the aisle in Congress that the bipartisan bill that passed last year, which gave a lot of money towards mental health funding and also allowed states the option to implement red flag laws and some other smaller gun safety things. They kind of acknowledged that’s as far as they’re going to be able to go in the current makeup of this Congress. So it seems like a stalemate and it’s kind of like now on a state level. And there was some talk from Tennessee’s governor about doing some small things, perhaps after the shooting in Nashville, but it doesn’t seem like there is much movement.

Rovner: And of course, in Tennessee, it was fighting about not doing anything about guns that erupted in that whole conflagration with people getting —

Knight: — expelled —

Rovner: —evicted from the Tennessee state legislature and then reappointed and yeah, I mean, that — people may not remember, that’s actually over a gun demonstration or a lack-of-gun-legislation demonstration. So who knows whether anyone will find something to do about it. All right. That is the news for this week. Now it’s time for our extra credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at khn.org and in our show notes on your phone or other mobile device. Sarah, why don’t you go first this week?

Karlin-Smith: Sure. I looked at an NBC News story called “Conspiracy Theorists Made Tiffany Dover Into an Anti-Vaccine Icon. She’s Finally Ready to Talk About It.” This was a nurse who was one of the first people to receive a covid vaccine when it first became available. And apparently, I guess, this is something that’s been a problem for her, she says, throughout her whole life. Sometimes with certain pain reactions she faints. And the story also talks about how she hadn’t really eaten lunch that day. But basically it was filmed and shared quite widely, including all over social media, and anti-vaccine activists basically took it and were using it sort of as proof of the harm caused by the vaccines. And the reaction to that from the hospital, and herself to some degree, was basically to just kind of keep quiet and not respond. There was very little pushback, yet — the idea was kind of if we ignore it, it will go away. But that just kept fueling everything. And basically people thought she might have even been dead and no one was telling. They thought the hospital was using her co-worker as sort of a body double to show proof of life. And a couple of years later, she’s finally trying to talk about what that experience was like and make clear again: She was fine, she was healthy, you know, she was more than happy to get the vaccine, you know, would do it again and stuff. But it’s a really interesting story because I think the journalists sort of go through again how we’ve been sort of grappling as a society with how to respond to this type of misinformation and how some of the normal kind of PR playbook strategies are actually hurting, not helping, public health. So we need to kind of shift to figure out how to handle that.

Rovner: And there are lots and lots and lots of these stories about people who, you know, quote-unquote, “died” when they got the vaccine, who are perfectly fine and walking around. It was — it was a really well done story. It’s just — it’s really kind of scary. Victoria.

Knight: Victoria, my extra credit this week is a story in The Washington Post by David Willman and Joby Warrick. It’s called “Research With Exotic Viruses Risks a Deadly Outbreak, Scientists Warn.” And so it’s basically kind of an in-depth look at how, over the years, the U.S. has funded virus research where — in other countries — where people go out into like forests and wildlife areas and collect bat samples, collect samples from different animals to try to kind of predict the next pandemic. And it profiles this one team in Thailand who has said, “We’re not accepting U.S. funds anymore.” They told the U.S. in 2021 after covid, “This feels too risky for us.” And we — they have been doing this research funded by the U.S. for four years, and they really felt like they hadn’t found much tangible benefit out of it either. So they’re kind of like, “It’s not worth the risk to our employees and potentially creating another pandemic on our own.”

Rovner: And and just to be clear, this isn’t gain-of-function research.

Knight: This is not even gain-of-function research.

Rovner: This is a different kind of potentially dangerous research.

Knight: Yeah, this is really just going out in the wild and collecting samples from animals that are out there already. But yeah, it’s not doing research in a lab that’s like altering a virus necessarily. So yeah, and so the story is kind of reckoning — like what is the balance between wanting to do scientific research and needing that knowledge for the future and the safety of employees and the general public. So, and it talked about how there is like — the U.S. does fund quite a bit of this kind of research around the world, and the pace of that has not always kept up with regulation and oversight. And so just kind of probing questions, especially as I talked about earlier — Congress does look into this issue of gain-of-function research and just the NIH funding research around the world in general.

Rovner: I feel like this whole week has been, where do government and science cross? Shefali.

Luthra: My story is from the well-named KFF Health News. It is called “For Uninsured People With Cancer, Securing Care Can Be Like Spinning A Roulette Wheel.” It’s by Charlotte Huff. It’s a really, really great look at what happens when you get cancer and in particular live in a state that didn’t expand Medicaid. Charlotte just does a really great job looking at the experiences that this woman has when she develops skin cancer and is recommended all these treatments that she can’t afford. She lives in South Carolina. She’s not eligible for Medicaid because they didn’t expand eligibility. And what it really gets into is the idea that there are a couple of cancers where you will get treatment, but for most of them, you will not get coverage; you have to pay thousands, sometimes tens of thousands out-of-pocket. And it’s a really well done, devastating look at what health care costs mean in our system and how much access really is for so much of health care based on where you happen to live.

Rovner: Yeah, it really is — really wonderful story. Well, my story, it’s also from The Washington Post, and it’s called “To Comply With a New Sesame Allergy Law, Some Businesses Add — Sesame,” by Karen Weese. So back in 2004, I covered the deliberation and passage of the Food Allergen Labeling and Consumer Protection Act, which for the first time required companies to put on the label in plain English if their products contained any of the eight major food allergens, which are milk, eggs, fish, shellfish, tree nuts, peanuts, wheat, and soybeans. It was an enormous relief, particularly to parents of young children with allergies and to anyone with a food allergy that could be fatal. So, the law also required food companies to label whether there was a chance that the product could have been cross-contaminated with one of those allergens. That’s why you sometimes see on a label, you know, quote, “This product was produced in a facility that also makes milk products or that uses nuts” or some such thing. The law has worked pretty well, say those who fought for it, and in 2021 Congress added sesame to the list of allergens that had to be labeled. Except that this time something weird happened. Many food companies, rather than carefully cleaning and monitoring their plants to ensure there would be no cross-contamination with sesame, instead are basically evading the law’s intent by adding small amounts of sesame flour to their products and then putting on the label that “This product contains sesame.” It’s dangerous for a lot of reasons but mainly because for people with sesame allergies who have eaten certain products without problems for years, they may not realize that, to them at least, a poison has been added to their favorite bread or roll or whatever kind of product. So this is something that I imagine Congress is going to want to go back and take a look at. All right. Before we go this week, you may have noticed that the introduction to the podcast has been tweaked. That’s because we have a new name. Kaiser Health News has been retired as of this week. We are KFF Health News to reflect that we are an editorially independent program of KFF, also a new name, and that neither of us is connected in any way to that big HMO [health maintenance organization] Kaiser Permanente. I hope you will bear with us as we all get used to the change. OK, that is our show. As always, if you enjoyed the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us too. Special thanks, as always, to our ever-patient producer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me, at least for the moment. I am still @jrovner. Victoria?

Knight: @victoriaregisk.

Rovner: Sarah?

Karlin-Smith: @SarahKarlin.

Rovner: Shefali.

Luthra: @shefalil.

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

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[UPDATED on April 18]

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

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

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

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

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

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

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

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

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

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

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

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

An Injection of Marketing

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

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

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

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

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

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

Speaking From Experience

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The Host

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

Medicare Advantage, the private-sector alternative to original Medicare, now enrolls nearly half of all Medicare beneficiaries. But it remains controversial because — while most of its subscribers like the extra benefits many plans provide — the program frequently costs the federal government more than if those seniors remained in the fully public program. That controversy is becoming political, as the Biden administration tries to rein in some of those payments without being accused of “cutting” Medicare.

Meanwhile, President Joe Biden has signed a bill to declassify U.S. intelligence about the possible origin of covid-19 in China. And new evidence has emerged potentially linking the virus to raccoon dogs at an animal market in Wuhan, where the virus reportedly first took hold.

This week’s panelists are Julie Rovner of KHN, Margot Sanger-Katz of The New York Times, Jessie Hellmann of CQ Roll Call, and Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Panelists

Jessie Hellmann
CQ Roll Call

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Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

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Margot Sanger-Katz
The New York Times

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Among the takeaways from this week’s episode:

• The Biden administration recently changed the formula used to calculate how much the federal government pays private Medicare Advantage plans to care for patients with serious conditions, amid allegations that many of the health plans overcharge or even defraud the government. Major insurers are making no secret about how lucrative the program can be: Humana recently said it would leave the commercial insurance market and focus on government-funded programs, like its booming Medicare Advantage plans.
• The formula change is intended to rein in excess spending on Medicare — a huge, costly program at risk of insolvency — yet it has triggered a lobbying blitz, including a vigorous letter-writing campaign in support of the popular Medicare Advantage program. On Capitol Hill, though, party leaders have not stepped up to defend private insurers as aggressively as they have in the past. But the 2024 campaign season could hear the parties trading accusations over whether Biden cut Medicare or, conversely, protected it.
• The latest maternal mortality rates released by the Centers for Disease Control and Prevention show the problem continued to worsen during the pandemic. Many states have extended Medicaid coverage for a full year after women give birth, in an effort to improve care during that higher-risk period. But other problems limit access to postpartum care. During the pandemic, some women did not get prenatal care. And after the fall of Roe v. Wade, some states are having trouble securing providers — including one rural Idaho hospital, which announced it will stop delivering babies.
• The federal government will soon declassify intelligence related to the origins of the covid pandemic. In the United States, the fight over what started the pandemic has largely morphed into an issue of political identity, with Republicans favoring the notion that a Chinese lab leak started the global health crisis that killed millions, while Democrats are more likely to believe it was animal transmission tied to a wet market.
• And in drug price news, Sanofi has become the third major insulin maker (of three) to announce it will reduce the price on some of its insulin products ahead of a U.S. government policy change next year that could have cost the company.

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

Julie Rovner: Vice News’ “Inside the Private Group Where Parents Give Ivermectin to Kids With Autism,” by David Gilbert

Jessie Hellmann: The Washington Post’s “Senior Care Is Crushingly Expensive. Boomers Aren’t Ready,” by Christopher Rowland

Joanne Kenen: The New Yorker’s “Will the Ozempic Era Change How We Think About Being Fat and Being Thin?” by Jia Tolentino

Margot Sanger-Katz: Slate’s “You Know What? I’m Not Doing This Anymore,” by Sophie Novack

Also mentioned on this week’s podcast:

• Coverage by KHN’s Fred Schulte on Medicare Advantage: https://khn.org/news/author/fred-schulte/
• The New York Times’ “Biden Plan to Cut Billions in Medicare Fraud Ignites Lobbying Frenzy,” by Reed Abelson and Margot Sanger-Katz
• The CDC’s “Maternal Mortality Rates in the United States, 2021,” by Donna L. Hoyert

Click to open the transcript

Transcript: The Policy, and Politics, of Medicare Advantage

KHN’s ‘What the Health?’Episode Title: The Policy, and Politics, of Medicare AdvantageEpisode Number: 290Published: March 23, 2023

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

Julie Rovner: Hello and welcome back to KHN’s “What the Health?” I’m Julie Rovner, chief Washington correspondent at Kaiser Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, March 23, at 10:30 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. Today we are joined via video conference by Margot Sanger-Katz of The New York Times.

Margot Sanger-Katz: Good morning, everybody.

Rovner: Jessie Hellmann of CQ Roll Call.

Jessie Hellmann: Hello.

Rovner: And Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Rovner: So a happy 13th birthday to the Affordable Care Act, which President Obama signed just a couple of hundred feet from where I am sitting now. But there’s lots of other health news, so we’re going to dive right in. I want to start this week with Medicare Advantage, the private Medicare alternative that now enrolls more than half of all Medicare beneficiaries. If you watch cable TV or pretty much any TV at all, you have likely seen the dueling ads. They’re part of a multimillion-dollar lobbying campaign, like this ad from the Better Medicare Alliance, made up of mostly Medicare Advantage insurers.

Excerpt from ad set in a bowling alley:Bowler 1: They might cut Medicare Advantage.Bowler 2: C’mon!Bowler 1: They’re talking about it in Washington.Bowler 2: Cut Medicare Advantage? Higher premiums? With inflation already so high?Bowler 3: That’s nuts!

Rovner: Or this one from the consumer advocacy group Protect Our Care.

Excerpt from ad: Insurance companies are lying to America’s seniors about cuts to Medicare Advantage benefits. Experts agree what they are saying is just plain false. Health insurance companies are simply trying to stop cuts to their sky-high profits, CEO salaries, and bonuses.

Rovner: I swear, Margot, I pulled the clip from that first ad before you also used it in your excellent story published Wednesday. So — and I know this is a hugely complicated issue that we’re going to try to take apart at least a little bit — but, who’s right here? Those who are saying that Medicare Advantage is about to be cut or those who were saying not really.

Sanger-Katz: I think actually they are both a little bit right. The Biden administration has made a very technical change to the formula that pays these private plans extra money when they sign up patients who have serious medical diagnoses. And this is, of course, a response to an earlier problem. It used to be Medicare Advantage plans — those are the private plans that are an alternative to the government Medicare program. It used to be that they just got a flat fee for everyone that they signed up. That was about what it costs on average to take care of someone in Medicare. And what happened is that the plans then had a huge incentive to only sign up healthy people. And so that’s what they tried to do. And they marketed to healthy people by doing things like including gym benefits in the health insurance plan or this famous, and perhaps apocryphal, example of, you know, locating the enrollment office on the third story of a building with no elevators so only people who could get up the stairs would be able to sign up for the plan. And so, there was this policy response where it said, well, you know, sicker people are more expensive to take care of, and we want these plans to not just be cherry-picking all of the healthiest people. And so they created this system that basically pays extra to the plans. If you have congestive heart failure, if you have cancer, or if you have diabetes, then your health plan gets, like, a little bonus. But what we have seen over the course of the life of this program is that this has created enormous incentives for the plans to diagnose their customers with as many diseases as possible, regardless of the strength of the evidence that they have. And there is a whole industry of data-mining operations that go through people’s medical records, of home health agencies that go into people’s homes just to diagnose them with more illnesses. And there are just absolutely widespread — from, like, every possible authoritative source that you can think of — allegations of overcharging of the federal government through this program and also of fraud. Not every insurance plan in the country in this program has been accused of fraud, but quite a lot of them have, including most of the largest players. And they are facing lawsuits in federal court for basically scamming Medicare by saying that their people are too sick.

Rovner: So I want to go back to the beginning or, really, the middle. Medicare has offered beneficiaries the option of enrolling in a private managed-care plan instead of what’s known as traditional Medicare, where patients can go to just about any doctor or hospital, pretty much from the inception of the program and pretty broadly since the Reagan administration in the early 1980s. They were originally called Medicare risk plans. Health plans almost exclusively, HMOs, said they could provide the same care more efficiently by, quote, “managing care,” and could still make a profit even if the government paid them 5% less than the average patient in traditional Medicare in that area. So it was a good deal all around. The plans were making money. The government was saving money. Yeah, that was a very long time ago. Since then, Congress has significantly raised what it pays the plans with the stipulation that they use the excess funds to either reduce premiums or add benefits, mostly dental, vision, and hearing care. Still, however, a lot of insurers are, to use a technical term, raking it in. In fact, Humana last month announced that it was going to pull out of the commercial insurance market in order to concentrate on its much more lucrative Medicare Advantage business. So, how are these companies both providing more benefits and making big profits? I know that fraud is part of it. Jessie, where’s all this money coming from?

Hellmann: Like Margot said … I think a lot of it has to do with the upcoding that they do. They’re just able to find all of these diagnoses from their enrollees, either through chart reviews … some have done home health visits where they send in people to interview patients and ask about their health history without really providing any care. So that’s another way. And it’s just become, like, a really lucrative business practice for them. But like Margot said, they’ve just been facing more and more scrutiny and lawsuits over the way that they do this.

Rovner: They deny care, too, right? That has been a long-standing issue that people who go into these plans and then get sick sometimes have trouble getting the care that they need.

Hellmann: Medicare Advantage plans do something called prior authorization, where they require providers submit requests for something to be covered before they’ll pay for it. They do this with a lot of more costly things, like imaging or like nursing home stays, which are obviously very expensive. And so if they can deny these claims and maybe get a beneficiary to do something that is cheaper before moving onto these more costly things, then that obviously saves some money. But that’s something else that the Biden administration has been looking more closely at. They’ve proposed a few rules that would just say that Medicare Advantage plans have to cover things that are covered by Medicare. They can’t just deny care for something based on their own proprietary models of deciding whether something is medically necessary or not.

Kenen: It’s complicated because sometimes there are patients that ask for things that they actually don’t need. You know, something they have seen on TV or they heard their neighbor had or whatever, and that [there’s] actually something more conservative [that can be done]. Back surgery is the famous example. You know, sometimes physical therapy and other treatments will do better than an $80,000 back surgery. But there’s a difference between saying, “Let’s try something else first,” and times when somebody is really sick and needs an expensive drug, they may have already tried a cheaper drug in another health plan the year before. It’s very hard to untangle, you know, when “no” is appropriate because we have overtreatment in this country. But the problem here is that sometimes “no” it’s completely inappropriate, and the insurer is not paying for something that the patient expected to get when they signed up for a health plan to take care of their health.

Rovner: And we should point out this is true in all managed-care plans, not just in Medicare Advantage plans.

Kenen: Yes.

Rovner: So before we move on, I want to give a shoutout to my KHN colleague Fred Schulte, who has been on the Medicare Advantage fraud trail like a dog with a bone for more than a decade now. We will link to some of his award-winning work in our show notes. Anyway, now the Biden administration, Margot, as you said, is trying to crack down on the, if not outright fraud, at least the manipulation of payments, which will also, at the same time, save the Medicare trust fund a lot of money. In the past, though, even small changes to Medicare Advantage, because it is so popular, have been met with a lot of pushback from members of Congress in both parties. But that’s not really happening this time, is it?

Sanger-Katz: Yeah, This has, I think, been the biggest surprise and the most interesting part of reporting on this story. Historically, Medicare Advantage is about half of Medicare’s enrollment, as in these plans. If you survey seniors who have these plans, they tell you that they really love them. And notwithstanding all the stuff we just talked about, I think they are popular by most people who use them. In part, it’s because they get these extra benefits. They have lower premiums. You know, they get some goodies that they wouldn’t get with regular Medicare. And in Congress, the preponderance of members of Congress have signed letters indicating that they support, I think, what they call a stable policy-and-rate environment for the plan. So last year, 80% of members of the House of Representatives signed such a letter. That’s just, I mean, you don’t see 80% of members of the House of Representatives agreeing on practically anything — and a majority of senators as well. And I think everyone’s expectation, including me, is that when these people signed this letter and said, you know, this is important and my constituents care about it, that they would have the back of the plans and that it would be hard for regulators to be aggressive in trying to change anything about this program because there would be such a big political outcry. And, in fact, what’s happened is they have really started cracking down. They started with some of these smaller regulations. And then the one that they did, it was kind of hidden in a technical way, but it had a really big impact. They changed this whole formula and they basically said, hey, plans, like, you can no longer get these extra payments for a lot of the diseases that they were very commonly making money for diagnosing people for. And all of a sudden, you know, this support on the Hill just kind of dissolved. And that is very much in the face of this huge lobbying effort. You know, Julie, you mentioned the television commercials, but the plans also mobilize their customers to call their members of Congress to contact the White House. Something like 142,000 calls and letters have been submitted to members of Congress and the White House. The proposal itself, there’s the formal comment process — in a normal year [it] gets like a couple of hundred comments, mostly from various stakeholders in the Medicare system. This year there was an organized letter-writing campaign and 15,000 comments were submitted on this rate notice. So we just see this environment in which the public has been activated. Lobbyists are going crazy. The CEO of United[Healthcare], the largest health insurer in the country, was making the rounds on the Hill, talking to members of Congress. And yet … and yet there’s really no one in Congress who’s standing up and screaming and yelling about how terrible this is. I mean, I shouldn’t say no one. There are a few individual members of Congress, Republicans, who have been highly critical of this and who have pointed out that this move is potentially inconsistent with President [Joe] Biden’s promise to never cut Medicare, which is a key campaign message for him going into his reelection. But the leaders in Congress, the heads of committees, the really prominent members, and certainly leading Democrats have not said those kinds of things. There were letters that came out very late in the process, really in the last week or so, from Republicans in House and Senate committees of jurisdiction that you might have expected to be these angry, partisan, like, “how dare you do this to Medicare Advantage?” kind of letters. And they were not those kinds of letters. They weren’t critical, but they were very polite and they were very technical. They’re, like, could you please answer the following 10 very technical questions about this tiny little detail of the formula? So it’s clear … they are concerned and they are providing oversight. And I don’t think that they are enthusiastically embracing these changes. But at the same time, I think they are not carrying water for the insurance industry and making it very politically difficult for the Biden administration to make these changes.

Rovner: I feel like the Humana announcement actually sent quite a message that says, wow, we can make a lot more money from Medicare than we can make from the commercial market.

Kenen: Well, I think that’s true. I mean, one reason so many seniors are in Medicare Advantage, and do like it, is that they get an incredible deluge of marketing. I mean, the companies went in here, they saw that it was a business opportunity. They have marketed themselves very aggressively. People get dozens and dozens of letters saying, “Apply for this plan” or “We’ll give you this. We’ll give you that.” So the market is there. But I also think there’s a political dynamic that’s bubbled up recently that’s different. There’s been a fight every year about Medicare Advantage payments. It hasn’t been as grassroots; it hasn’t gotten as much attention. But there’s been a fight. I mean, every year the administration puts out their formula. Every year the industry fights it back. You know, there’s some kind of compromise. The industry doesn’t get hit as much as it would have. It’s part of the game, right? I mean, that’s how payment rules are made in Washington. But something has changed here that Biden quite successfully, at the State of the Union, really put the Republicans on the hot seat in terms of protecting Medicare and Social Security. And they’ve flipped it. Because the Republicans are better at language. You know, if this was a Republican rule, they would be calling it the “Protect America’s Seniors From Fraudulent Insurers” rule. You know … the Democrats just don’t do that.

Rovner: We should point out that it was the Republicans who named it Medicare Advantage — renamed the whole Medicare private plan program.

Kenen: Right. But just as … Biden’s politically great moment at the State of the Union making the Republicans promise not to touch Medicare, the Republicans have flipped it, because now they’re accusing Biden of attacking Medicare in a different way. And, you know, Medicare was this hot political issue in campaigns in the late Nineties and the early 2000s. It was replaced by a 10- to 15-year fight about what became the Affordable Care Act and repealing it and all that. And then there was this political vacuum in 2022, and in 2020, after the Republicans failed to repeal the ACA, we sort of had a — not health slogan-free, but it was on the back burner and …

Rovner: We had a reset. Well, we did have a pandemic.

Kenen: We had the pandemic, but — and that was politicized — but the traditional health care fight is reemerging. The traditional partisan health care fight is … both sides have accused the other over the year of “Mediscare.” This is the platform for that fight that I think we will continue to see going into 2024. I mean, it will evolve. I mean, this particular rule will get settled. But, you know, you’re sort of seeing who is the champion of Medicare, which Republicans, years ago, when Paul Ryan, when he was the budget chair of the House and the speaker of the House, he really wanted to significantly transform Medicare in ways that made it very different than the Medicare as it existed for them, Republicans, who are “saving Medicare.” For the Democrats, it was “Republicans are privatizing and destroying Medicare.” This is just Chapter 9,000. It’ll morph again between now and November 2024, but it’s begun.

Sanger-Katz: I think the politics of this are interesting and I think kind of unsettled. I’m very curious to see how this plays out in the campaigns. I do think that there is an available argument for Republicans to make that this change, which does take money out of the pockets of these plans and which potentially could mean that beneficiaries are going to end up with a little bit less generosity, because when those plans make less money, maybe they’re not going to give you as many extra goodies or lower your premium by as much. We don’t know that, but it’s certainly possible.

Rovner: In 1997, they cut payments for what was then Medicare Plus Choice, I think, Medicare Part C. And that’s exactly what happened. They cut all the extra benefits and people threw a fit, and they ended up having to put a lot of the money back.

Sanger-Katz: But in the Affordable Care Act, they cut a lot of the money and the benefits just kept growing. So we don’t know how the plans are going to absorb this change. But anyway, I think there is this available attack line for Republicans. Biden said he’s not going to cut Medicare. Look what he did. He’s cut Medicare. He’s taken all this money out of Medicare and it’s causing your premiums to go up. On the other hand, I do think there is this opportunity for Biden to say, “We reduced fraud; we improved the health of the Medicare trust fund.” And I think a lot of Republicans are actually committed to both of those things. I think they care about program integrity. They care about the fiscal future of the program. And so it’s all just a little bit scrambled. This almost feels more like something you might see in a Republican administration than a Democratic one.

Rovner: I was just saying, Jessie, is there any inclination on the Hill to do anything about this, or do you think they’re just going to either talk about it or not talk about it, as it were?

Hellmann: I haven’t heard anything about any potential action on the Hill. There’s just been letters sent asking questions, or some Republicans have sent letters saying, “We don’t like this.” But I don’t know that there’s enough support in both the Senate and the House to override this. And they are talking more about, like, the health of the Medicare trust fund. And some of the rules proposed by the administration could help strengthen that a little bit. It’s not going to solve all of its problems. But to go in and meddle with what the administration is doing to help the trust fund a little bit, while Congress is having more and more debates about helping the trust fund, I don’t know if that would be a good look.

Kenen: You could still have a policy compromise on, like, anti-fraud policy and still have a political fight. “We saved it!” “No, we saved it!” Oh, they … it’s way too soon to know what issues are going to dominate 2024 and what issues attract sustained attention from a public that doesn’t sustain attention to much of anything anymore. But right now, this is certainly a trial balloon for 2024. And I can see it. I can see that. I can see working out some kind of compromise on the actual technical issues and still having a political fight.

Rovner: Well, we’re going to move on because we’re clearly not gonna settle this today. But I hope people at least got a flavor for really how complicated this is, both, you know, technically and politically. I want to turn to something else that’s complicated: That’s reproductive health. And by that I mean much more than abortion and birth control. A new study from the Centers for Disease Control and Prevention finds that maternal mortality, the death rate for people when they are giving birth or in the weeks immediately after, rose by more than a third in 2021 compared to 2020. And African American women, even those with higher incomes, were 2½ times more likely to die during or just after childbirth than white women. Certainly, the pandemic had something to do with this. It disrupted medical care for just about everybody, and pregnant women who got covid had a higher risk of severe illness or death. But this is really just a continuation of a trend that’s been troubling health experts for several years now. Joanne, you’re our public health expert here. Why has this been so difficult to address?

Kenen: I mean, I think some of it is the two things that Julie said for 2020. I mean, you know, there was all this fear that the vaccines could hurt pregnant women. Actually, it was covid that hurt pregnant women and their babies. So, hopefully, we’re over the worst of that. And people weren’t going in for good prenatal care. So that was a factor. But this is a really sustained problem, and we’ve begun to take some steps. Most states are now extending Medicaid coverage postpartum for six months or a year under Medicaid. I think that when many of us, including me, when I first heard about these problems with maternal mortality, I was thinking about giving birth. I was thinking about hemorrhage and things that happen in the delivery room or right after, when, in fact, it’s really the full year after. There is high risk for everything. And that’s where a lot of the disparities in our system … the states that don’t have Medicaid, the states that  …

Rovner: Didn’t expand Medicaid.

Kenen: … didn’t extend Medicaid, you know, or there aren’t … most of them are now expanding it for women in this category, or beginning to. So that might help. I mean, the disparities throughout the health care system, this is not just an income thing. In all economic strata, the racial disparities in maternal mortality exist. And then I just found out something recently that really shocked me. I’ve done some work over the past six months writing about domestic violence as a public health problem, and I’ve moderated two panels, just like in the last 10 days on it. And most states do not count homicide, suicide, and overdose as part of the maternal mortality figures. So if you think these figures are bad, it’s way worse, because pregnancy and postpartum are all so high risk for all of those things. But since the OB-GYNs actually review these maternal mortality cases, they’re not reviewing those other three categories. So as bad as it is, it shocked me to realize what we’re looking at and being horrified by isn’t even the full picture.

Rovner: Wow. So, well, here’s where reproductive health writ large and abortion policy cross in ways that may be unexpected to lawmakers who voted for their states’ bans, but not to anybody who’s studied health policy. In Idaho, a rural hospital has announced it will no longer deliver babies, forcing women seeking labor and delivery care to travel nearly 50 miles. Why? Because the hospital, Bonner General Health in Sandpoint, says it cannot keep enough health professionals, both OB-GYNs and pediatricians, to safely run a maternity ward. Why not? Well, Idaho’s, quote, “legal and political climate,” says the hospital from its press release, quote: “The Idaho legislature continues to introduce and pass bills that criminalize physicians for medical care nationally recognized as the standard of care.” Margot, your extra credit this week is about something similar, but in Texas. So why don’t you do it now?

Sanger-Katz: Yes, I wanted to recommend this article from Sophie Novak in Slate called “You Know What? I’m Not Doing This Anymore.” And her piece profiles a whole bunch of nurses and doctors who work in OB-GYN care in Texas who are quitting or leaving or who are considering not taking jobs that they might otherwise have taken. And I think we don’t have real data on these trends, and I’m always a little bit worried about these kinds of stories that, you know, you can always find five or six or seven or 10 doctors who are unhappy or who say that they might quit. There was a lot of those stories, like, when Obamacare passed, all these doctors are going to retire early because they don’t like the rules. I think that turned out to be more marginal than we might have expected based on that coverage. But I still think that this story is telling these stories of these providers, and I think it’s pointing to something that is a real risk and is potentially a real trend, which is if you are someone who is in the business of caring for women through pregnancy and childbirth, and you feel like you cannot do the things that you were trained to do, that there is potential criminal liability for you in providing the care that your patients need, if you’re having to watch your patients suffer through needless harm or medical risk because you can’t provide an abortion when one is medically indicated without facing that kind of legal risk. I do think that there is a real risk that these people are not going to want to practice in those states. They would rather go to a place where they have a little bit more autonomy and a little bit less concern about prosecution. And what that means is that the women left behind in these states, however you feel about abortion, may not have access to as many health care providers, and they are going to continue to have pregnancies and births and need that kind of support. And I think that is a very interesting and troubling dynamic that I think could have very large reverberations and could, of course, make the trends that Joanne was just talking about, you know, even more concerning and lead to even more disparities. Because, of course, it is a lot of the states that are banning abortion are states that have these kind of poor, minority communities who are already facing a lot of the maternal mortality. We see in the existing data it’s increasing in a kind of across-the-board way, but there are some places where it’s worse than other places. And a lot of the worst places for maternal and fetal mortality are these same places that are banning abortion and where they may be at risk of losing some of the providers that can help ameliorate the problem.

Rovner: And it’s not just losing the providers, it’s replacing the providers who do get old enough and retire or who leave, because we’re seeing medical students, fourth-year medical students, say they’re loath to apply for residencies in some of these states, partly because they’re worried about their training, but partly because, you know, if they’re women, they may need this care at some point or they may have family members who will come with them who need this care at some point. And because, for the most part, where you do your residency tends to be where you end up practicing. So, I mean, we didn’t see it so much in this year’s match, but I’m wondering whether this is going to be an issue, too. There’s some big, important academic training centers in some of these states with bans. I’m thinking, you know, Vanderbilt comes to mind immediately in Tennessee. I think this is another thing that was perhaps unexpected, although if you thought about it hard, you could have predicted it.

Kenen: I mean, pregnancy is complicated. A century ago, women commonly died in pregnancy. And we live in an era where it’s safer than it had been, but we forget it can still be risky. And wanted pregnancies, very much wanted pregnancies, can go wrong. And I’ve experienced … I mean, I have two kids, but I experienced that, and I needed emergency medical care and I was able to get it. I needed emergency medical care more than once, and I was able to get it.

Rovner: And I remember visiting you when you were on bed rest.

Kenen: Right? It was one of my few fun nights on bed rest, when Julie and Joanne Silberner brought me dinner. We had a picnic, right? In bed, right? But, you know, I never had to deal with anything except the grief of losing a pregnancy. So, you know, it was a very much wanted pregnancy, and I didn’t have to worry about anything being withheld from me. I had a lot of things go wrong a lot of times. But, you know, I was really lucky to end up with the family I have. When I read these stories, and I go back and think, what if I had to deal with infection? What if I couldn’t get that care? And we’re just not thinking this assumption, by mostly male lawmakers, that it’s not a huge medical thing. Pregnancy changes your body, everything about your body, it’s not just cosmetic. There are lots and lots of risk factors, before and after. That [has] sort of just been glossed over as, oh, it’s not a problem. And it is a problem. And one reason we’re going to see this shift in medical practice is because they understand it’s a problem. I mean, you read these stories about these doctors, and we’ve talked about them every week, and our listeners have heard them and read them, about doctors who are watching a patient with a serious infection, until she is getting close enough to die that they can treat her, but not so close to dying that they lose her. And you hear the anguish.

Rovner: That’s why I was so taken by that line in the press release from the hospital in Idaho, which is that doctors don’t want to possibly be criminalized for what is considered the standard of care. They’re being asked to basically choose between perhaps getting sued or put in jail and what they vowed to do to care for their patients. And it’s really hard. It’s not really that much of a surprise that people are going to leave or not go there. All right. Well, we will definitely come back to this, too. I want to talk about covid briefly. Jessie, the president signed the bill passed by Congress to declassify intelligence on the origin of covid. Do we have any idea when that’s going to happen? How soon? And do we get to see this, too? Or just the members of Congress?

Hellmann: The director of national intelligence is supposed to declassify this information 90 days after the law is passed. After that, I’m not entirely sure if it’s just for Congress or it’s for the public, to be honest.

Rovner: We will see. I was amused that, right after this happened — because now we have all this talk that, you know, “Oh, absolutely” or not, absolutely it was a lab leak, but “more likely it was a lab leak.” Now we have new evidence suggesting that it may, in fact, have started in the Wuhan wet market, after all, jumping from something called raccoon dogs? Now, I consider myself something of an animal expert here. I have never heard of a raccoon dog.

Sanger-Katz: They’re really cute. I was enjoying looking at all the photographs of them.

Rovner: Are we going to now go back to the “OK, maybe it really did come from the market”? I-I-I …

Kenen: What I’m about to say is an oversimplification, but if you’re a Republican, you think it’s a lab leak. And if you’re a Democrat, you think it’s a raccoon dog. And that is an oversimplification. And one of the things that drives me crazy is that the potential for lab leaks exists and lab safety is an issue that should be bipartisan. There have been lab leaks in the U.S., there have been lab leaks elsewhere in the world. And that doesn’t mean this came from a lab leak, but lab leaks are a thing. And we want to make them not a thing. But again, there are many lessons we should be able to take from the pandemic; that’s one of them. Like, OK, maybe this wasn’t a lab leak, maybe this was the Wuhan animal market, but let’s take this as a moment to think about how we can protect ourselves from a future lab leak. You know, we may never conclusively know. Even the raccoon dog thing is still a theory. I mean, there’s evidence behind that theory, but the scientific establishment has not said, OK, this is it. There’s still debate. The science world tends to think it’s zoonotic, that it’s from an animal, but it’s not over yet. And again, the politicization is preventing good public policy.

Rovner: If only someone could turn that fight into something. And as I quoted Michael Osterholm last week as saying, “It doesn’t matter which one it was, because we have to be ready for both of them in a future pandemic.”

Kenen: Exactly. And we’ll probably have both. I mean, we may not have a pandemic from a lab leak, but is it possible that somebody, somewhere, or some community will be hurt from a lab leak? Yes, it is. And we need to mitigate that. Is it possible we have another zoonotic infection? I mean, there’s two Marburg outbreaks in Africa right now. I mean, that’s from animals. And there’s two of them going on. It’s an obscure disease. It’s worse than Ebola. It doesn’t spread as fast, but we have zoonotic infections way more often than the average American realizes.

Sanger-Katz: And also just one more thing, which is we still had and have a global pandemic that has caused enormous suffering and death and fear around the world. And in some ways, I feel like this obsession with like whose fault it is is a distraction from what can we do to prevent such a thing from happening in the future and really looking at, like, what was done appropriately and inappropriately in terms of the covid response? Pinning this down seems … it seems academically interesting to me. It seems useful to know. I think, as you guys have said, you’ve got to be ready for both things anyway. But it also feels like a little bit of a sideshow sometimes when the reality is: Covid came for us. It wasn’t a near-miss where looking at the origin is the whole story. It’s also everything that came afterwards is really important, too.

Rovner: Yes, absolutely. Well, finally this week, one more update. On last week’s podcast,while we were discussing Novo Nordisk following Eli Lilly’s lead in announcing insulin price cuts, I wondered aloud how long it would be before the third company in the triumvirate that controls most of the diabetes drug market, Sanofi, would follow suit. As it turned out, the answer was a couple of hours. In a press release that came out Thursday afternoon, Sanofi said it would cut the price of its most popular insulin product by 78% and ensure that people with health insurance pay no more than $35 a month for their insulin. But I’m thinking this fight is not completely over; now that the three big companies have voluntarily said we’ll lower our prices on some of our insulins, Congress is still going to want to do something about this, right?

Hellmann: Yeah. Sen. [Chuck] Schumer said last week that he still wants Congress to address this issue. He still wants to cap the cost of insulin because, like you said, there are still insulin products that some of these companies offer that don’t fall under these announcements.

Rovner: Drug prices will continue to be a top-of-mind issue, I suspect. All right. Well, that’s as much news as we have time for this week. Now it is time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at khn.org and in our show notes on your phone or other mobile device. Margot, you’ve already done yours. Joanne, why don’t you go next?

Kenen: It’s a piece in The New Yorker, and I’m not sure how she pronounces her name. I think it’s Jia Tolentino. If any of you know, please correct me. But the story is called “Will the Ozempic Era Change How We Think About Being Fat and Being Thin?” I mean, this is a diabetes drug that is being used off-label for weight loss, quite widely to the point that there’s a shortage for people who have diabetes; they are having trouble getting it. It does help people lose weight and it’s become very much in demand because it does help you lose weight. And there are a few others in this class. So, the question she poses: This is a metabolic disorder, it’s not just a willpower issue, and will this help us get to that point? … It was a really good, interesting article, and I still ended up with a lot of questions about long-term safety, about do you have to take it forever and how much, and what happens if you don’t? It’s treating obesity rather than thinking about how to prevent obesity, which is a better — you know, too late for some millions of Americans, but there is generations to come. So but it was an interesting, provocative landscape piece.

Hellmann: My story is from The Washington Post. It’s called “Senior Care Is Crushingly Expensive. Boomers Aren’t Ready.” It’s just a story about how expensive long-term care could be, especially if you need really specialized care. One of the people interviewed for this story would have to pay about $72,000 a year to stay in an assisted-living facility. This person has Alzheimer’s and so they just need a little more help than someone else might. And they talk a lot about how Medicaid will cover some of this care, but only if you spend all of your life savings. And obviously, Medicare doesn’t really cover stays in assisted-living facilities either. I know we talked in email about how perennial this issue is. It’s something that was an issue 20 years ago. People are warning: We need to fix this problem.

Rovner: More than that. When I first joined CQ in 1986, it was the first big story I wrote, about what are we going to do about long-term care for the baby boomers? Here we are almost 40 years later, still talking about the same thing.

Hellmann: Yeah, I guess the answer is nothing.

Rovner: Not much has happened.

Kenen: Yeah, what’s happened is we’ve shifted more and more of it onto families.

Rovner: Yeah, that’s true.

Kenen: More complicated care for longer.

Rovner: My extra credit this week is a truly terrifying piece from Vice News called “Inside the Private Group Where Parents Give Ivermectin to Kids With Autism,” by David Gilbert. And the headline says most of it. What it doesn’t say is that when you give horse wormer to kids — and this group actually advises the use of the paste that’s given to horses — they’re going to have adverse reactions. The kids, not the horses, including headaches, stomachaches, blurry vision, and more. But the administrators of this group insist that the side effects aren’t because the children are being administered something that can kill people in the wrong dosages, but because the medication is, quote, “working.” They also say it can cure a whole host of other disorders from Down syndrome to alopecia. It is quite the story. You really do need to read it.

OK. That is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review — that helps other people find us, too. Special thanks, as always to our ever-patient producer, Francis Ying. As always, you can email us your comments or questions. We’re at whatthehealth — all one word — at kff.org. Or you can tweet me. I am @jrovner. Margot?

Sanger-Katz: @sangerkatz

Rovner: Jessie.

Hellmann: @jessiehellmann

Rovner: Joanne.

Kenen: @JoanneKenen

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

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The maneuver goes by different names — it’s sometimes called a specialty carve out, or alternative funding – but relies on exploiting charitable programs. It works like this: a health plan sponsor excludes certain expensive specialty medicines from coverage and taps an outside vendor to help patients obtain the drugs for free from patient assistance programs run by drugmakers or foundations.

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

President Joe Biden’s fiscal 2024 budget proposal includes new policies and funding boosts for many of the Democratic Party’s important constituencies, including advocates for people with disabilities and reproductive rights. It also proposes ways to shore up Medicare’s dwindling Hospital Insurance Trust Fund without cutting benefits, basically daring Republicans to match him on the politically potent issue.

Meanwhile, five women in Texas who were denied abortions when their pregnancies threatened their lives or the viability of the fetuses they were carrying are suing the state. They charge that the language of Texas’ abortion ban makes it impossible for doctors to provide needed care without fear of enormous fines or prison sentences.

This week’s panelists are Julie Rovner of KHN, Shefali Luthra of The 19th, Victoria Knight of Axios, and Margot Sanger-Katz of The New York Times.

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Victoria Knight
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Shefali Luthra
The 19th

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Margot Sanger-Katz
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Read Margot's stories

Among the takeaways from this week’s episode:

• Biden’s budget manages to toe the line between preserving Medicare and keeping the Medicare trust fund solvent while advancing progressive policies. Republicans have yet to propose a budget, but it seems likely any GOP plan would lean heavily on cuts to Medicaid and subsidies provided under the Affordable Care Act. Democrats will fight both of those.
• Even though the president’s budget includes something of a Democratic “wish list” of social policy priorities, the proposals are less sweeping than those made last year. Rather, many — such as extending to private insurance the $35 monthly Medicare cost cap for insulin — build on achievements already realized. That puts new focus on things the president has accomplished.
• Walgreens, the nation’s second-largest pharmacy chain, is caught up in the abortion wars. In January, the chain said it would apply for certification from the FDA to sell the abortion pill mifepristone in states where abortion is legal. However, last week, under threats from Republican attorneys general in states where abortion is still legal, the chain wavered on whether it would seek to sell the pill there or not, which caused a backlash from both abortion rights proponents and opponents.
• The five women suing Texas after being denied abortions amid dangerous pregnancy complications are not asking for the state’s ban to be lifted. Rather, they’re seeking clarification about who qualifies for exceptions to the ban, so doctors and hospitals can provide needed care without fear of prosecution.
• Although anti-abortion groups have for decades insisted that those who have abortions should not be prosecuted, bills introduced in several state legislatures would do exactly that. In South Carolina, those who have abortions could even be subject to the death penalty. So far none of these bills have passed, but the wave of measures could herald a major policy change.

Also this week, Rovner interviews Harris Meyer, who reported and wrote the two latest KHN-NPR “Bill of the Month” features. Both were about families facing unexpected bills after childbirth. If you have an outrageous or exorbitant medical bill you want to share with us, you can do that here.

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

Julie Rovner: KHN’s “Girls in Texas Could Get Birth Control at Federal Clinics, Until a Christian Father Objected,” by Sarah Varney

Shefali Luthra: The 19th’s “Language for Treating Childhood Obesity Carries Its Own Health Risks to Kids, Experts Say,” by Jennifer Gerson

Victoria Knight: KHN’s “After People on Medicaid Die, Some States Aggressively Seek Repayment From Their Estates,” by Tony Leys

Margot Sanger-Katz: ProPublica’s “How Obamacare Enabled a Multibillion-Dollar Christian Health Care Cash Grab,” by J. David McSwane and Ryan Gabrielson

Also mentioned in this week’s podcast:

• The New York Times’ “The Programs You’d Have to Cut to Balance the Budget,” by Alicia Parlapiano, Margot Sanger-Katz, and Josh Katz

Click to open the transcript

Transcript: Biden Budget Touches All the Bases

KHN’s “What the Health?”Episode Title: Biden Budget Touches All the BasesEpisode Number: 288Published: March 10, 2023

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

Julie Rovner: Hello and welcome back to KHN’s “What the Health?” I’m Julie Rovner, chief Washington correspondent at Kaiser Health News. And I’m joined by some of the best and smartest health reporters in Washington. We are taping this week on Friday, March 10, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. Today we are joined via video conference by Shefali Luthra of The 19th.

Shefali Luthra: Hello.

Rovner: Victoria Knight of Axios News.

Victoria Knight: Hi. Good morning.

Rovner: And Margot Sanger Katz of The New York Times.

Margot Sanger Katz: Hello, everybody.

Rovner: Later in this episode we’ll have my “Bill of the Month” interview with Harris Meyer. It’s a twofer this time: two successive bills from two different families related to having a baby. But first, this week’s news. We are taping on Friday this week because President [Joe] Biden released his budget Thursday afternoon, and it felt weird to have a news podcast without talking about the budget. And yes, like most presidential budgets since the 1980s, this one is, quote-unquote, “dead on arrival” on Capitol Hill. But one thing the president’s budget does is provide a pretty-detailed look at the administration’s priorities and policy initiatives. Which health program stuck out to you as getting a publicity, if not an actual funding, boost in this document? Victoria, you were looking at the budget.

Knight: Yeah. My colleagues at Axios and I spent several hours yesterday morning going through the budget. I think it was really interesting because I think he was trying to toe the line between “we want to save Medicare, make sure it stays solvent,” but also “we want to push some more progressive ideas as well.” So there’s kind of both things in there. Some obvious things: He wants to permanently extend the enhanced tax credits for the ACA [Affordable Care Act] — so, make permanent those subsidies. Those expire, currently, at the end of 2025. He also wanted to do something called Medicaid-like coverage for eligible people in states that haven’t expanded Medicaid. And then he also wants to expand the number of drugs to be negotiated under the IRA [Inflation Reduction Act] and also move up the timeline a little bit. So, just an example: It’s supposed to be 10 drugs to be negotiated in 2026. And now he wants to do 20. Something also really interesting: [He] wants to do like a Netflix-like subscription service for hepatitis C to basically eradicate hepatitis C within the U.S.

Rovner: I thought that was maybe the most interesting thing in this budget because it’s something that we just hadn’t heard of before.

Knight: Yeah.

Rovner: That, basically, I mean, these hepatitis C drugs were really expensive when they first came out and there was concern that Medicaid programs, in particular, were going to have trouble paying for them because many of the people who have hepatitis C are intravenous drug users, and they’re more likely to get hepatitis C — or people in prison. Lots of people on Medicaid who have hepatitis C. And this would basically be a way to pay in advance for the drugs. Is that essentially what they would do?

Knight: Yeah. And I think it’s also interesting that it at least has one Republican senator — Bill Cassidy is super into this idea. He did something similar in Louisiana. I’m not sure there’s other Republicans that are on board for that, but I thought that was really interesting. You know, of course, he was talking about extending the $35 insulin cap to the commercial market. There’s some other stuff about behavioral health, pandemic preparedness. One other thing Shefali will appreciate also, he proposed increasing Title X family planning funding by almost 80% from 2023 levels, which I think — Shefali, maybe you know — [is] one of the highest increases they’ve ever proposed, in a while at least.

Luthra: Yeah, the family planning clinics, interest groups, etc., were very, very happy about this proposal, even if they know it will not become reality. I think their sense was this was a commitment that would be really transformative for them, especially now, when they are so tightly funded.

Rovner: I did notice that for a president who has not technically said that he’s running again, some of these targeted increases were for some of the very important interest groups who have been kind of, I won’t say whining, but complaining. You know, Title X had not gotten big increases since Biden became president. There’s an initiative for more money for home- and community-based care in Medicaid, which is something, again, there’s an active constituency for in the Democratic Party; the “Cancer Moonshot,” you know, which has obviously been something near and dear to President Biden’s heart; also more money … also, the [American] Cancer Society sent out a lot of emails yesterday saying, yay, thanks for proposing this big budget increase. So there does certainly seem to be a lot of touching of the important constituencies, perhaps in anticipation of reelection campaign?

[Three panelists chime in at once.]

Luthra: Julie, you forgot …

Sanger-Katz: I would say …

Knight: And I think he did … Go, Margot!

Rovner: One at a time! [laughing all around] Margot, you go first.

Sanger-Katz: I would say so. And I would also just point out that the Medicare policies in the bill were previewed by the White House a couple of days before the budget release, and they were, like, the main thing. This is what they were leading with. The president had an op-ed in The New York Times describing his Medicare policies, and they put out a fact sheet with a lot of the Medicare policies. And I think it really reflects this notion that improving the solvency of Medicare and also committing to not really cutting the core services of Medicare, that this is a very key political message that the president cares about, that the president wants to run on, and that he thinks is a very useful contrast with what some Republicans have proposed in the past and what he imagines they might want to propose as House Republicans get ready to release their own budget, which faces some difficult constraints because Speaker [Kevin] McCarthy has promised certain members that the budget that they will pass will be a balanced budget. And that’s quite hard to do without touching the big health care programs.

Rovner: Yeah. Republicans have not promised not to touch Medicaid, which now the president has been very careful to say, “It’s not just Medicare and Social Security. I’m not going to let you cut Medicare, the Affordable Care Act either.” All right, Victoria, you wanted to say something?

Knight: I think — it was also interesting that, I do think, the president did want to push forward some of the more progressive policies that … the progressive base care about, such as doing more negotiating of drugs; something Sen. Bernie Sanders (I-Vt.) has talked a lot about is the community health centers program; expanding Medicaid, home- and community-based services; … and the insulin price cap — things that I think the progressive base cares about as well. So I feel like, as you’re saying, that interest groups, but also the different bases and also the groups that care about reproductive health care, they want him to do something after Roe v. Wade. So it definitely was, like, this huge list of trying to cater to everyone.

Rovner: It’s kind of a Democratic wish list.

Sanger-Katz: At the same time, though, I think he did leave out some of the things that were part of the Build Back Better package. In the previous budgets, the president had gone even bigger on things that the progressive base wanted. And you can see a lot of things in this budget where he’s ticking those boxes, as you say. And I think a lot of policies that he has proposed in the past that he wasn’t able to get through the last Congress — but not all. It does seem like this budget is a little more focused on being able to reduce the deficit a little bit less on this very expansive notion of a robust federal government that is spending money to improve people’s lives in quite as many ways as the message that he has been proposing in his previous budgets. You can see, again, I think this is a pivot towards campaign mode, towards his assessment of the current political moment, growing concerns about the deficit and about inflation.

Rovner: But also, as you mentioned, Margot, they put out the Medicare part of this in advance, mainly because I feel like the Medicare part of the budget is not so much a part of, you know, the statement of the budget as it is a negotiating position for this whole fight we’re going to have over the debt ceiling in a couple of months, where the Republicans are going to want to demand cuts to programs basically in exchange for not letting the U.S. default on its debts. And what the president has managed to do here is say, “We’re going to lower the price of prescription drugs more, we’re going to tax the rich more. And those two things are going to a) reduce the deficit some and b) shore up the Medicare trust fund. So you can’t accuse me of not dealing with the impending problem of Medicare.” How much of a box does that actually put Republicans in when we start to get to these negotiations?

Sanger-Katz: I don’t know how much of a box it really puts them in for a couple of reasons. One is that some of what he’s proposing is really kind of an accounting gimmick. He’s taking money that is already flowing into the federal budget, that is already part of the dollars and cents of our deficit, and he’s just redirecting them from the general fund into the Medicare trust fund. So it is true that these proposals would extend the solvency of the Medicare Hospital Insurance Trust Fund, which is projected to run into some financial trouble in the coming decade. But it is not true that, like, all of the things that he’s proposing are actually new money. Some of it just comes out of other parts of the budget. It doesn’t change the deficit.

Rovner: So I will point out that that is a time honored way of extending the solvency of trusts.

Sanger-Katz: Oh, sure. I’m not saying that Biden is alone in doing that. But I just think there’s kind of three things he’s doing in this proposal. One of them is not deficit reduction. It’s just kind of moving money around. One is this drug price reduction proposal where he’s trying to get more savings by going more aggressively after more drugs. I think that is a place where he can put Republicans in a box a little bit. They’ve come out in opposition to the drug price negotiation provisions that were part of the Inflation Reduction Act that they passed last year. But those policies are super popular. The public really supports them. They feel like the pharmaceutical companies make too much money. They think that Medicare should be able to negotiate. So I think that’s a very politically shrewd decision that I think does demand potentially a response from Republicans as a possibility for deficit reduction. But then the third thing that he did is he really just raised taxes. You know, these are taxes on the rich; as Biden has been promising all along, he’s not going to raise taxes for people earning under $400,000 a year. So they’ve increased these payroll taxes, they’ve increased some investment taxes. There was kind of a loophole, a category of businesses that were not subject to that tax in the past. And, you know, I think those are basically nonstarters with Republicans. And when Republicans talk about deficit reduction, they often are very, very focused on cutting spending that the federal government does. They are much less interested in increasing taxes. And I do think that the fact that Biden led with this proposal, that he’s so comfortable talking about raising taxes as a core part of his platform, is a sign that the politics of tax cuts have changed a little bit, that that is … if you’re just taxing the rich, it seems like the public will accept that. Democrats seem actually excited about that in certain cases. But I still think tax increases are a hard political row to hoe. I think that it is not something that probably appeals to many Republican politicians. And I also think it’s probably not something that appeals to many Republican voters, either. So I don’t know that it really puts Republicans in a box in a meaningful way because they don’t feel any tension where their supporters will want them to do this thing.

Rovner: Obviously, this is a big fight yet to come. Victoria, you wanted to say something.

Knight: Yeah. I just want to add one thing. We did have, like, the first indicator: The House Freedom Caucus had a press conference this morning, and they didn’t give a lot of details, but they did say they want to restore Clinton-era work requirements for welfare programs. So they didn’t specify Medicaid, but it seems pretty likely that’s probably what they’re talking about. My colleagues and I did talk to some Republicans last week that were indicating they did want work requirements for Medicaid. So I think that seems like the very first. There’s going to be three different groups within the House Republican caucus that are going to release budgets: the Budget Committee, the House Freedom Caucus, the Republican Study Committee. So I think we are going to start seeing the outlines of what they want to do very soon. But that was kind of the first one coming out this morning, so …

Rovner: Yes, underscoring the fact that the Republicans don’t agree on what they want to do …

Knight: No.

Rovner: … which is why we haven’t seen their budget yet.

Knight: Exactly.

Rovner: Although I will point out President Biden’s budget was a month late, too.

Sanger-Katz: Can I just say one thing about the Republican budget? Because I actually spent a lot of time looking at various budget proposals and trying to examine this goal that the Republicans have of balancing the budget. Just like: How hard is it to balance the budget? And it turns out that it’s extremely hard. It’s sort of hard in a normal year. But in this post-covid era, when spending has been so elevated for so long, balancing the budget within a decade is just really, really, really hard. If you do it without raising taxes, which Republicans say they don’t want to raise taxes; if you do it without cutting defense spending, which Republicans say they don’t want to cut defense spending; if you do it without cutting Medicare or Social Security, which recently McCarthy has said he does not want to do — you end up just … this is just the basic math … having to cut everything else by 70%. That’s 7-0%. That is not the kind of cut that you can achieve even by imposing a work requirement on Medicaid, a work requirement on food stamps, and other kinds of policies that Republicans have proposed in the past. That is like deeply, deeply reducing the role of the federal government, you know, cutting Medicaid in more than half. Larry Levitt [KFF’s executive vice president for health policy] pointed out earlier this week reducing Medicaid spending by 70% probably means 50 million fewer people would have Medicaid coverage. And that’s just Medicaid. You’re talking about basically everything that the government does — environmental protection, law enforcement, military pensions, just about any program that you can think about in the government that’s not Medicare, Social Security, or direct defense spending. Seventy percent cut is quite hard to do. And so I am very curious to see what these budgets look like. I can tell you, having looked at some of the previous Republican proposals, that those all relied on some reductions to Medicare and Social Security because those programs represent such a large percentage of federal spending that if you don’t cut those at all, there’s just not a lot of dollars left. And in my reporting on this question, it does seem like one thing that the Republican Budget Committee is very likely to do is to use very aggressive assumptions about the economic growth that their policies will unleash. And so the idea is that if the economy grows by so much, then tax revenue, what increase all by itself, because people will be earning more money, and so that will enable them to balance the budget in 10 years without having to actually reduce the deficit by as much as independent scorekeepers like the Congressional Budget Office think would be necessary.

Rovner: Although I would point out that every time we’ve had one of these big tax cuts that Republicans say it’s going to grow the economy enough to pay for it, it has not grown the economy enough to pay for it.

Sanger-Katz: Indeed! You know, cutting everything that the government does by 70% probably actually would have a negative impact on the economy. People would be losing money. They would be losing their government jobs. These would be very large economic impacts that probably most economists do not think would lead to economic growth.

Rovner: Yeah, well, we will see. I will put, Margot, the nice story you did with your colleagues demonstrating all of this in chart form in the show notes. OK. Let us turn to abortion. We will start with Walgreens, poor Walgreens, caught in the maw of the abortion wars. In January, the FDA said that brick-and-mortar pharmacies for the first time could start dispensing the abortion pill, mifepristone, whose distribution had been tightly regulated since it was first approved more than 20 years ago. Almost immediately, both CVS and Walgreens, the country’s largest and second-largest pharmacy chains, announced they would apply for FDA certification to distribute the pills in states where abortion is still legal. Then, last month, 20 Republican state attorneys general, including at least four in states where abortion is still legal, warned CVS and Walgreens that if they send the pills by mail, they could be in violation of the 1873 Comstock Act, which we have talked about here before, which prohibited the mailing of items considered, air quotes, “obscene,” which at the time included information about birth control. Cut to last week when Walgreens appeared to cave to the pressure and the threat of legal action, saying it would not sell the pill in states where it’s illegal, not actually naming those states. Then, after a huge backlash, it tried to walk back its position a little, mostly leaving lots of questions. Shefali, what is your take on what Walgreens is and isn’t going to do now vis-a-vis mifepristone? They’ve kind of said both things.

Luthra: I think there’s a lot of layers here, but I want to go back to January for a moment, when we got that news from Walgreens and CVS so quickly that they would participate in providing mifepristone. Frankly, a lot of these folks that I spoke to were very surprised that [the pharmacies] reacted so quickly because carrying mifepristone in stock opens you up to really intense harassment, boycotts, protests from the anti-abortion movement. And we did see right away many of the premier anti-abortion movements calling for boycotts of Walgreens and CVS, for protests, etc. They have been organizing protests outside pharmacies right now. And there has been pressure from the beginning from governors like [Florida] Gov. Ron DeSantis instructing pharmacies not to stock the press down. The fact that Walgreens ultimately has caved in these states with hostile governments wasn’t surprising. If anything, it was surprising that it took quite so long. I am incredibly curious to see what happens with CVS and Rite Aid, the other two pharmacies that are now getting caught in the crosshairs, facing really intense pressure from lawmakers and politicians who support abortion access and also those who don’t. We saw in New York this week, the governor and the attorney general called on pharmacies to continue carrying mifepristone. Frankly, I’m skeptical that that really matters because there is no reason not to carry mifepristone in New York, a state where the government is very friendly to abortion.

Rovner: And we should point out, because this is my biggest frustration: Nobody’s actually doing it yet because nobody’s gotten certified yet.

Luthra: Correct.

Rovner: They’re not — all these headlines that said, “Walgreens is going to stop doing this.” It’s like, no, they’re going to not start doing this. Sorry.

Luthra: And we have no idea when they will get certified how long it would take. We have no idea, frankly, if mifepristone will still be able to be distributed in the country at that point, because we are still waiting on the ruling from this judge in Texas. We simply have so many open questions. And at this point, this really is more of an avenue for people to make statements about how they feel about abortion access, than it is actually affecting people’s ability to get care. The other statement grandstanding that I have been really struck by is what we’ve seen from the California governor, Gavin Newsom, who really does love to talk a lot about his pro-abortion rights bona fides, even if those statements don’t translate much into actual impact or policy. And what we saw this week was his promise that California wouldn’t do business with Walgreens if they wouldn’t stock mifepristone.

Rovner: And this is not just an idle threat in California, right? There’s a huge contract that he now says he’s not going to renew.

Luthra: So there is a contract. But friend of the podcast and former KHNer Sydney Lumpkin found the contract that Newsom was referring to. You would think it would be a significant amount of money, given how much attention it has gotten. It is a $54 million contract over five years. When you look at the overall market cap of Walgreens, a $30 billion company, it’s not clear exactly how meaningful that actually is compared to the pressure they are facing from lawsuits and the very powerful anti-abortion movement.

Rovner: So, and what … I mean, you referred to this, but what are we thinking that CVS and Rite Aid are going to do — having seen Walgreens literally put through the wringer here on this issue?

Luthra: I think that’s a really good question. I — I mean, coming into this week — had assumed that they would follow the path of Walgreens and do the exact same thing, right? Stock mifepristone, provide it with a doctor’s prescription in states where they are protected and face no legal risks, but perhaps not do so in those states where a) mifepristone is banned, as they have said they would not do. And also in states where, like Kansas, for instance, abortion is legal, but you have a very anti-abortion attorney general. It is quite interesting that they have not said either way what they will do beyond just, well we won’t do it in states where it’s illegal.

Rovner: Yeah, if I was advising CVS at this point, I would tell them to not say a word to anybody until some of this shakes out.

Luthra: Exactly.

Rovner: All right. Well, let us move on to Texas, where there is always abortion news. As Shefali mentioned, we have not had the decision yet on that abortion pill case out of Amarillo, but both sides are still going at it on other issues. Remember all those stories we’ve been chronicling about women with wanted pregnancies gone wrong who couldn’t get medical care until they were literally at death’s door or they went to another state? Well, five of them are suing the state of Texas, saying they should have been allowed to terminate their pregnancies under existing exceptions to the abortion bans, except that doctors and hospitals have been unwilling to risk giant fines and even jail time. The five women — some of whom are still pregnant, some of whom are not — want the state, whose officials continue to claim that these women were eligible for abortions in Texas if their lives were truly at risk, they want the state to clarify those exceptions even more. Is there any chance this happens? They’re not asking for the bans to be lifted. I mean, this is a kind of a unique lawsuit that we’ve not seen before because we’ve not seen that many women in this situation before.

Luthra: I think this is a pretty smart approach. I wouldn’t be surprised if it has better odds of success than, as you mentioned, a request to fully overturn Texas’ abortion bans because the exceptions are really unclear. Doctors do not feel safe talking about abortion, even in cases where it is likely that it would be very beneficial for the pregnant person, for a fetus that has really minimal chance of survival upon birth. One thing that Nancy Northup, the head of CRR [the Center for Reproductive Rights], said to me when I asked her is, depending on how this case goes, it is not at all unlikely that we see similar lawsuits filed in other states with abortion bans with similarly vague “life of the parent” exceptions that are, in reality, impossible to enforce. I think this is going to be the beginning of a very robust series of legal challenges to state abortion bans. And we’ll see better success for abortion rights lawyers in some states than in others — really depending on the makeup of these different states’ supreme courts.

Rovner: Yeah, I mean, it’s funny because over the years I’ve heard obviously lots of warning about this possibility, both from the Center for Reproductive Rights, which, as you say, is pushing this case, and other groups. But nobody could sue because nobody had standing, because it hadn’t happened. It was all theoretical. Well, now it’s happened and we have people to whom it is not theoretical, who are able to go to court and say, hey, this happened to us and it violated our rights and you need to do something about it.

Luthra: And I do want to add just one thing. I mean, it’s — I think we can’t understate just what these people have been through, the women who are suing Texas. I was just really struck by one woman who flew from Texas to Colorado for an abortion that she couldn’t get in state, paid extra for a seat by the airplane in case she went into labor on the flight, and said that she still has PTSD to this day from having to travel while afraid that she might go into labor and could die from it. Like, what these people are going through right now is just … it’s really difficult for us to imagine. And I think we’re just going to hear so many more stories that are really troubling about people whose lives have been so deeply put at risk, and they’re unable to get the care their doctors want to provide.

Rovner: Right. And I say for the 11th time, these are not women who got pregnant by accident and don’t wish to be pregnant. Many of these are women who’ve been through infertility treatment and were desperately anxious to be pregnant, were thrilled when they got pregnant, but whose pregnancy took a bad turn either for the fetus or, in some cases, one of the fetuses of twins, or in some cases the pregnant person themselves. Well, meanwhile, the Texas Republican legislature has been busy proposing even more abortion restrictions. Last week, we talked about a bill that would ban websites that include information about how to get abortion pills and punish internet providers who don’t block those sites. This week, we have a bill giving state officials the upper hand in prosecuting abortion cases in parts of the state where local Democratic prosecutors have suggested they don’t plan to zealously pursue such cases. Another bill would create a special prosecutor whose job would be, among other things, to pursue violations of the state’s abortion bans. Why is Texas such a hotbed of this?

Luthra: It’s always Texas. Texas is the biggest state in the country to have banned abortion, right? Most of the people who are traveling out of state — well, maybe not most, but the plurality — are Texans, because just so many people live there. And if we think about it, Roe v. Wade, as a case, it came from Texas. SB 8, the first law that allowed a state to circumvent Roe and ban abortions [at] anything after six weeks, that was a Texas law. This is a place where lawmakers really believe that they can be a fertile testing ground for the future of abortion restrictions. Between them and Missouri, I think, that is where we will see the bulk of innovative new ways to further restrict access.

Rovner: Well, speaking of big states that are banning or thinking about banning abortion, you wrote about Florida this week, which already has a ban on abortions after 15 weeks [and is] now considering a ban after six weeks. Florida is kind of a pivotal state in all this, right?

Luthra: Florida, third-biggest state in the country. And if we look at the map of the U.S. South and particularly the Southeast, Florida is just critical. Between Florida and North Carolina, that is where people across the region are going for abortions. And Florida has more than 60 clinics compared to, you know, around a dozen in North Carolina. If abortion there is banned after six weeks, there will be thousands of people who are displaced. They will probably have to go to North Carolina, while abortion is legal there, to Virginia and then to Illinois. And that is just really too far for so many people to travel. There just aren’t realistic options once you take Florida off the map.

Rovner: Well, finally, a bill has been introduced in the South Carolina legislature that could potentially subject patients who get abortions to the death penalty. Now, I am old enough to remember last year, when anti-abortion groups insisted they didn’t want to punish women who had abortions, just those who provide or facilitate them. I guess that’s not the case anymore.

Luthra: And I think we need to see where this bill goes. It is not the only state, either, where we are seeing legislation proposed that would treat abortion as murder or as homicide. There was a bill in Louisiana just last summer that failed on that front. But we have seen bills introduced in Tennessee, in Georgia, in so many others that I cannot remember now. But it’s a long list. I think what’s interesting is, so far, none of these bills have actually moved forward. And it’s still obviously early in the session. But what I’m curious about is, is this chipping away at the resistance toward these kinds of really strict abortion bans? And is this the first step in a multiyear effort to redirect who is punished for getting an abortion to switch from the doctors, the health care providers, to the pregnant people themselves, which has always been sort of this Rubicon the movement has been afraid to cross.

Rovner: Yeah, I remember in 2016 Chris Matthews was interviewing then-candidate Donald Trump and sort of got Donald Trump to say, you know, yes, the woman should be punished. And the anti-abortion movement came at him, like, no, no, no, that’s not what we say. That’s not what we want. And now it’s, you know, seven, eight years later and that’s not necessarily what people are saying. So, we will see how that goes. OK. That’s the news for this week. Now, we will play my “Bill of the Month” interview with Harris Meyer and then we’ll come back and do her extra credits.

We are pleased to welcome to the podcast Harris Meyer, who reported and wrote the last two KHN-NPR “Bill of the Month” stories, which are kind of related. Harris, welcome to “What the Health?”

Harris Meyer: Thanks very much, Julie.

Rovner: So, both of these bills have to do with something very common and very treacherous to your financial health: having a baby. Let’s start with baby No. 1, a now-3-year-old named Joey Trumble. Where is she from? Why was she in the hospital for 36 days?

Meyer: Joey was born prematurely in December 2019. Her mother, Brenna Kearney, is a writer in Chicago, and she was diagnosed with preeclampsia, and her doctors ordered her hospitalized at Northwestern. And then she developed a worse form of preeclampsia called HELLP syndrome. But anyway, the baby was born healthy but premature. And the baby, Joey, was treated at Northwestern Prentice, but without the knowledge of the parents the doctors who were treating her came over from next door from Lurie Children’s, and her hospital, Northwestern, was in network for her health plan. But Lurie Children’s doctors were out of network. They did not know that. So after her baby was sent home — it had about a month, 36 days, of hospitalization — the family got a bill of about $12,000, which was unexpected.

Rovner: That’s right. And we should point out that the baby was covered, right, under the mother’s health insurance.

Meyer: Correct.

Rovner: And yet they still got a bill for $12,000.

Meyer: That’s right. The hospitalization was covered. And, to their surprise, the doctors, the neonatologist from Lurie who treated the baby, were not covered in network. And so Brenna spent the next year contesting these charges. And they were never told that the doctors were out of the network. But she had found out that there was a 2011 Illinois law, which was in effect, which prohibited this kind of out-of-network billing for neonatology services.

Rovner: That’s right. And we should point out that this was before the federal No Surprises Act took effect, because this was late 2019.

Meyer: Correct.

Rovner: But there was a state law that should have applied.

Meyer: There was a state law. Illinois was a pioneer in this. So she cited that law to Blue Cross Blue Shield Illinois and to Lurie Children’s, and they said they knew nothing about it. So the bill was sent to collections about a year later, and she was able to get Blue Cross, finally, and, a year after the birth, to cover the Lurie doctor charges fully. However, in December, three years after she gave birth, she finds out she’s being billed again, after she thought the whole ordeal was over — many years after. And she finds out that Blue Cross of Illinois had taken the money back and now Lurie was coming after her and her husband again for the out-of-network charges. And that’s when she came to Kaiser Health News, and I made calls to Lurie, to Blue Cross of Illinois, and to Northwestern. And after my calls, Lurie agreed to drop the charges. But now a state senator, the Illinois Department of Insurance, and the Illinois attorney general are looking into this to see if there was a long pattern of violations by Lurie of this 2011 state law. And Brenna actually has been contacted now by three other women who experienced similar out-of-network bills from Lurie. So we’ll see what happens with that.

Rovner: So sort of a happy ending to that one. Let’s move to baby No. 2, or, more accurately, his mother. Who is she and what happened to her?

Meyer: OK. This was last June. Danielle Laskey is a school nurse, an RN, in Seattle. She was on vacation with the family. And at 26 weeks pregnant she felt that her water broke. Her doctors in Seattle ordered her to come back and said, you’d better come in. And her doctors were at Swedish Maternal & Fetal Specialty Center in Seattle, which was in network for her Blue Shield health plan. And when she got there, they said, yes, your water broke. You were at risk for the same complication from your first pregnancy three years ago. We want you to go to Swedish Medical Center across the street immediately, and we want you to stay there until you give birth, and we’ll monitor you. So she was in the hospital for seven weeks until she gave birth in August of last year.

Rovner: Oh, so just for context, Swedish is one of the big hospitals in Seattle, right?

Meyer: Yes, absolutely. And it’s one of the specialty facilities for this particular uncommon complication, which is called placenta accreta. Anyway, she was there for seven weeks. And again, she and her husband were not told that the hospital was out of network. But it turns out that Swedish, even though her doctors were — her Swedish doctors were in network for her health plan, it turns out that Swedish Medical Center was out of network, and she found out. Then the baby was born. The baby was in the hospital, the baby boy, for about a month. And then, meanwhile, after the baby was born, she experienced symptoms again, and she was rehospitalized for a day to have this placenta condition treated. Both those hospitalizations — you know, she and her husband, who’s a psychiatrist, thought they were emergencies. The doctors regarded them as emergencies. But yet afterward, the Regence Blue Shield and Swedish decided they were not emergencies. And so, guess what? The family was hit with over $100,000 in out-of-network bills for the two Swedish hospitalizations.

Rovner: And this was after the federal law took effect, right? This was last year.

Meyer: The federal law and a Washington state law were both in effect at that point, which say that you cannot apply out-of-network charges in an emergency situation. So, at first, Blue Shield said that it was not an emergency and it didn’t come under the law. And Swedish Medical Center was going to take the family to collections. The family appealed to Regence Blue Shield. Regence in January granted the appeal for the first hospitalization, erasing $100,000 or so of the charges. But the second hospitalization, $15,000 bill, was still in effect. And then they contacted Kaiser Health News. I contacted Regence Blue Shield and Swedish, and then the charges were dropped for the second hospitalization.

Rovner: Amazing how that happens.

Meyer: Yeah, well, it’s not a solution. So the twist on this one is that Regence Blue Shield said we decided it was an emergency and that it wasn’t proper that the doctors were in network but the hospital wasn’t, so we’re going to consider this an in network and erase the charges. But they said Regence Blue Shield had a contract with Swedish, which made Swedish a quote-unquote “participating provider”; therefore, the federal and state laws do not apply to that situation, and the hospital was allowed to charge the out-of-network charge. We’re going to erase it for this case, but the law does not apply to that situation.

Rovner: I confess, if I’m in a hospital and they say they’re a participating provider, I’m going to assume that means they’re in network. And in this case, it doesn’t, right?

Meyer: Right. It’s a very strange twist that my experts had never encountered before. I took the issue to the federal agency CMS, which administers the No Surprises Act, and they said that they’re going to look into this and HHS, Treasury Department, and Department of Labor are all going to have to look into this to see if this could be fixed through an agency guidance or whether this would require a congressional action to fix this apparent loophole in the law.

Rovner: Creativity. So what’s the takeaway here for both women and particularly for pregnant women who know at some point they’re likely to be in the hospital? You can’t ask every single person who touches you whether they’re in your network. And isn’t that what state and the federal law are supposed to guard against? These are the exact things that we assumed would be taken care of. Right?

Meyer: Right. Well, first of all, the family, the patient, and their loved ones need to ask the hospital and the insurer to tell them their rights under the No Surprises Act and make sure that both the insurer and the provider are following the letter of those federal and state laws. Second, if they do get, God forbid, a out-of-network bill, they need to immediately appeal that to the insurance company, and there’s a two-level appeal process. The second level, they get an independent review. And then, at the same time, they need to file a report or a complaint with the state attorney general’s office, the state department of insurance, and maybe even contact state legislators. There also are private agencies or private companies with nurses and lawyers, etc., that will help families, for a fee, address issues like this. Hopefully it shouldn’t require that, but sometimes it may. And of course, then there’s Kaiser Health News. You can file your “Bill of the Month” complaint through the portal, which we can’t deal with hundreds of thousands of cases, obviously.

Rovner: But we can help at least a few. And Harris Meyer, you helped two. So thank you very much. And thank you for joining us.

Meyer: Thank you, Julie.

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

Knight: My extra credit is called “They Could Lose the House — to Medicaid,” by Tony Leys, and it is published on NPR but is a KHN story. It’s about a family in Iowa who found out, after the mother in the family died, that they could lose their house because she was getting services through Medicaid. She had dementia, and so she needed really intensive at-home family care. Then after she died, they got a letter from the Iowa Department of Human Services — just a month after she died, so not long after — saying that the state was trying to recoup the money that they had spent on her care. So it was almost over $200,000 that they were asking for. And what was really upsetting is this family home was going to be the inheritance for the daughter. And so now they’re kind of like, what are we going to do? Thankfully, they don’t have to do anything with the house until something happens to the father. So it’s not gone immediately. But this is basically something that some states do. It’s called estate recovery programs. And if people use Medicaid in those states, the states have the ability to come back later … whether it’s, like, a house or they can ask for funds that these families used for Medicaid. So it’s really illuminating. I had no idea this was something that happened, and it varies by state to state. But in Iowa, this is something that they kind of pursue very aggressively.

Rovner: I remember when Congress made this a possibility, I think it was back in 1995. It’s been around, the possibility of states recouping Medicaid money for a long time. But as you point out, not all states do it. And it’s usually a surprise when states do do it. People still really don’t know about it. Shefali.

Luthra: So my story is from my 19th colleague, Jennifer Gerson. The headline is “Language for Treating Childhood Obesity Carries Its Own Health Risks to Kids, Experts Say.” And what Jen did, which I think is really smart and important, is she looked at the new clinical guidelines we got from the American Academy of Pediatrics. And those were meant to improve how we evaluate and treat obesity in children. And what she gets into is that there are a lot of children’s health experts, especially mental health experts, who are deeply concerned about what the impacts of these new guidelines could be, how they might exacerbate weight stigma, and how the long-term ramifications of some of the treatment guidelines could actually have worse outcomes for young people as a result, by building on weight stigma, which could lead to different kinds of unhealthy behaviors, could lead to mental health harms that could have much longer term repercussions, possibly more, in fact, dangerous than the actual problems that these guidelines are trying to treat. And one thing that Jen notes I think is really important is that the implications of weight stigma, in particular, are especially harmful for young girls who, as we know, are already facing so many mental health crises in general right now. I thought this was a really important look at a potentially really troubling unintended consequence, and I’m really glad Jen wrote about it.

Rovner: Yeah, I had no idea. It was a very counterintuitive but really interesting piece. Margot, what do you have this week?

Sanger-Katz: I wanted to suggest an article in ProPublica called “How Obamacare Enabled a Multibillion-Dollar Christian Health Care Cash Grab,” by J. David McSwane and Ryan Gabrielson which is just this wonderful historic dive into how the Affordable Care Act ended up allowing something called Christian health ministries to provide an alternative to health insurance. As we all know, the Affordable Care Act basically said, if you’re going to offer health insurance, it has to meet certain minimum guidelines in terms of what it covers and how it works. And these Christian health sharing ministries are just this huge, huge exception where basically it’s just, you know, groups of religiously affiliated people can get together and just pay for each other’s health care or not, depending on what they want to do. There has been a lot of reporting over the years about the degree to which these plans are kind of scammy or poorly run or are not paying for needed health care for their members who think that they are an alternative to insurance. And so this piece is just fun because it looked at the lobbying that generated this strange policy.

Rovner: Yeah. You know, I remember when they got the Christian sharing ministries exception into the ACA and not really knowing where it came from. Well, this story explains exactly where it came from. So it is quite an eye-popping read. Mine is from my KHN colleague Sarah Varney, and it’s called “Girls in Texas Could Get Birth Control at Federal Clinics, Until a Christian Father Objected. Now, for decades, underage girls have been able to get contraception from federally funded Title X family planning clinics without parental permission. An effort by the Reagan administration in the early 1980s, dubbed the “Squeal Rule,” which would have required that parents be notified after the fact, was struck down in federal court and the Reagan administration did not appeal it. And no, I was not there to cover that at that time. I did look it up. A couple of months ago, Judge Matthew Kacsmaryk — yes, that Judge Kacsmaryk, who will any day now rule on whether the FDA approval of the abortion pill should be revoked — ruled in favor of a father in Texas, not a father whose daughters did or said they wanted to obtain contraception from a Title X clinic. But the father complained that the very possibility that his daughters could get birth control without his consent rendered that portion of the law — which has been in effect since Title X, was signed by Richard Nixon in 1970 — unconstitutional. And of course, the judge agreed with him. So for now, the ruling only applies in Texas. But lest you think they’re not coming for your birth control, think again.

OK. That is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review — that helps other people find us, too. Special thanks, as always, to our ever-patient producer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth — all one word — @kff.org. Or you can tweet me. I’m @jrovner. Shefali?

Luthra: I’m @shefalil

Rovner: Victoria.

Knight: @victoriaregisk

Rovner: Margot.

Sanger-Katz: @sangerkatz

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

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Revelations that AbbVie, the manufacturer of Humira, made more than $100 billion in extra profits by abusing the patent system to delay generic competition has spurred efforts by the Biden administration and Congress to limit the length of patent monopolies over prescription drugs.

An executive order issued in July 2021 forced the Food and Drug Administration and the U.S. Patent and Trademark Office to join forces to finding ways to reduce the number of poor-quality patents that are granted. And the Senate’s Judiciary Committee reported out five bipartisan bills addressing competitive abuses that delay generic competition or otherwise lead to higher prescription drug prices.

Continue to STAT+ to read the full story…

In making its case, the Pharmaceutical Accountability Foundation argued AbbVie allegedly overcharged the Dutch health care system by up to $1.2 billion by “abusing” its position in the marketplace and keeping prices high. The company sold approximately $2.3 billion worth of Humira in the Netherlands between 2004 and 2018, when its patents provided a monopoly.

Continue to STAT+ to read the full story…

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

Teen girls “are experiencing record high levels of violence, sadness, and suicide risk,” according to a new survey from the Centers for Disease Control and Prevention. In 2021, according to the survey, nearly 3 in 5 U.S. teen girls reported feeling “persistently sad or hopeless.”

Meanwhile, a conservative judge in Texas has delayed his ruling in a case that could ban a key drug used in medication abortion. A group of anti-abortion doctors is suing to challenge the FDA’s approval decades ago of the abortion pill mifepristone.

This week’s panelists are Julie Rovner of KHN, Alice Miranda Ollstein of Politico, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Sandhya Raman of CQ Roll Call.

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

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Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico

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Sandhya Raman
CQ Roll Call

@SandhyaWrites

Read Sandhya's stories

Among the takeaways from this week’s episode:

• American teenagers reported record rates of sadness in 2021, with especially high levels of depression in girls and teens identifying as LGBTQ+, according to a startling CDC report. Sexual violence, mass shootings, cyberbullying, and climate change are among the intensifying problems plaguing young people.
• New polling shows more Americans are dissatisfied with abortion policy than ever before, as a U.S. district court judge in Texas makes a last call for arguments on the fate of mifepristone. The case is undermining confidence in continued access to the drug, and many providers are discussing using only misoprostol for medication abortions. Misoprostol is used with mifepristone in the current two-drug regimen but is safe and effective, though slightly less so, when used on its own.
• There are big holes in federal health privacy protections, and some companies that provide health care, like mental health services, exploit those loopholes to sell personal, identifying information about their customers. And this week, Republican Gov. Glenn Youngkin of Virginia blocked a state law that would have banned search warrants for data collected by menstrual tracking apps.
• California plans to manufacture insulin, directly taking on high prices for the diabetes drug. While other states have expressed interest in following suit, it will likely be up to wealthy, populous California to prove the concept.

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

Julie Rovner: NPR’s “Is the Deadly Fungi Pandemic in ‘The Last of Us’ Actually Possible?” by Michaeleen Doucleff

Alice Ollstein: The New York Times’ “Childbirth Is Deadlier for Black Families Even When They’re Rich, Expansive Study Finds,” by Claire Cain Miller, Sarah Kliff, and Larry Buchanan; interactive produced by Larry Buchanan and Shannon Lin

Joanne Kenen: NPR’s “In Tennessee, a Medicaid Mix-Up Could Land You on a ‘Most Wanted’ List,” by Blake Farmer

Sandhya Raman: Bloomberg Businessweek’s “Zantac’s Maker Kept Quiet About Cancer Risks for 40 Years,” by Anna Edney, Susan Berfield, and Jef Feeley

Also mentioned in this week’s podcast:

• The CDC’s “U.S. Teen Girls Experiencing Increased Sadness and Violence”
• The Fun Violence Archive’s “Mass Shootings in 2023”
• The Washington Post’s “Now for Sale: Data on Your Mental Health,” by Drew Harwell

Click to open the transcript

Transcript: The Kids Are Not OK

KHN’s ‘What the Health?’Episode Title: The Kids Are Not OKEpisode Number: 285Published: Feb. 16, 2023

Julie Rovner: Hello and welcome back to KHN’s “What the Health?” I’m Julie Rovner, chief Washington correspondent at Kaiser Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Feb. 16, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. Today we are joined via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Sandhya Raman of CQ Roll Call.

Sandhya Raman: Good morning.

Rovner: And Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Joanne Kenen: Hi, everybody.

Rovner: Later in this episode we’ll have the winner of KHN’s health policy valentines contest. I hope everyone had a pleasant Valentine’s Day with someone that you love. But first, this week’s health news. I’m calling our lede segment this week “The Kids Are Not OK,” and we’ll get to the gun violence stuff in a minute. First is news from the Centers for Disease Control and Prevention’s Youth Risk Behavior Survey. And let me just read from the press release, quote, “Nearly 3 in 5 — 57% — of U.S. teen girls felt persistently sad or hopeless in 2021, double that of boys representing a nearly 60% increase, and the highest level reported over the past decade.” According to the survey, teens who identify as LGBTQ+ have, quote, “ongoing and extreme distress. More than 1 in 5 of that group said they had attempted suicide in the year before the survey.” Now, clearly, 2021 was a bad year for most of us. The pandemic was still raging, but the political fights over things like vaccines and masking were raging, too. But these rates of mental health problems found by the biannual survey of high school students has gone up in every report since 2001. Why is this happening? What is wrong with our young people and what can we do to help?

Kenen: Well, whatever’s wrong with our young people is going to also be wrong with our old people. I mean, we create the world in which … I mean, I’m a mother and I’m an aunt and I’m an extended-family motherly person. There’s something about the world that we have created for our young people. Julie, we grew up in the Cold War. We grew up … we don’t remember the missile crisis and things like that. But we did grow up in an era of anxiety, existential threats. And yet, for our generation, it wasn’t as bad as it is for this generation. And in this generation, you look at kids who seem to be on top of the world, and they feel like the world is on top of them.

Rovner: Well, at least in my case, you couldn’t be bullied unless you were in person … which is not true anymore.

Kenen: But even 2000, 2001, it wasn’t. That’s not the only thing going on here. And it’s not only the pandemic. I mean, it’s lots of things.

Ollstein: What really jumped out to me in this data was the really high rates of rape and sexual violence. You know, the CDC has said that 1 in 5 teen girls have experienced sexual violence just in the past year, and more than 1 in 10 say they’ve been forced to have sex. This was grouped together with the mental health, depression, suicidal ideation data, indicating that these things are related. And so I think in order to pinpoint some factors, it really seems like … people don’t know how to relate to each other in a sexual way that’s healthy. I think a lot about the efforts to restrict education about sex and sexuality in schools and how that could potentially make this even worse.

Rovner: And remember, this is a survey of high school students. So these are younger young people, or at least early in their, you know, sexual awareness.

Kenen: Yeah, but there was assault and unwanted … there was ugly stuff in prior generations, tons of it. And it wasn’t … and in some ways it was more secretive and more shameful. I mean, I’m not saying it’s not a problem. It’s obviously a huge problem. Alice is right. But it’s not unique to this generation. It’s hard to measure because we weren’t looking for it. But it certainly wasn’t something that didn’t happen. But I think it was even more secretive in the past. So I agree with Alice, but I don’t think that’s all of it.

Rovner: Sandhya.

Ollstein: And you’re right that it’s hard to know for past generations.

Kenen: But they didn’t ask that question.

Ollstein: Since they’ve been asking, it’s gotten worse. They say it’s … sexual violence is up 20% since 2017. Rape is up 27% since 2019. So since they’ve been investigating this, it’s getting worse.

Raman: I would also add the cyberbullying element is a huge piece. You know, if we were looking at this maybe 20 years ago, that was not the same case. The amount of time that teens and young people spend online is much greater now, even within the data they looked at it — that cyberbullying was a lot higher for teens, for LGBTQ youth. And that has been a broad issue that, even this week in Congress, the Senate Judiciary Committee was looking at protecting kids online. And a huge element of that was cyberbullying. You heard from different parents who had lost a child due to excessive cyberbullying on a lot of these social media apps and due to suicide or other mental health issues. And I think that’s a huge piece of now versus, you know, several years ago.

Rovner: Yeah, I agree. Well, clearly, one factor in the declining mental well-being of high school students is the threat of being swept up in a mass shooting event. As if this week’s shooting at Michigan State University wasn’t awful enough, some of the students who had to shelter in place for hours in East Lansing were also survivors of the Oxford, Michigan, high school shooting in 2021. And there was even one student that we know of who was at Sandy Hook Elementary in 2012. Now, in college, there have been 71 mass shootings, defined as an incident in which four or more people are shot or killed, so far in 2023, according to the Gun Violence Archive, and it’s only the middle of February. And just in time, Gallup reports that 63% of Americans are dissatisfied with the nation’s gun laws. Up 7 percentage points from last year and the highest level in 23 years. Is there any way to get this any closer to the top of the issues for lawmakers to address? I mean, they got something tiny done last year, but it feels like the problem is just exploding.

Raman: No, I was going to say, even last year with the incremental stuff was really difficult to get across the board. And, even going back to the CDC data, there were survey results about how many kids are afraid to go to school right now. And that was one of the factors that was rising. And gun violence is obviously a factor in safety, especially for kids now. But I think on a federal level, getting something additional across the line, especially with this split Congress, is going to be really difficult. It might be more of a state-level thing. I think Michigan is already talking about doing something, but it might have to be more on that end than federal.

Ollstein: Yeah, absolutely. And not only with the divided Congress, but I think a lot of the champions of gun reform on the Republican side have since retired. I’m thinking of Sen. [Pat] Toomey, in particular. And so not only do you have a House-Senate divide, but you don’t have some of the voices on the right calling for this that you’re used to.

Rovner: Yeah, the sides seem to be retreating to the poles, as usual, and the public is not happy about it.

Kenen: Well, one last thing, Julie, really quickly. I mean, I think young people today are very aware of climate as an existential threat, which was not true of prior generations.

Rovner: Yes.

Kenen: And I think kids have this real profound fear. And I think that feeds into the anxiety part of it. At least, you know, they just …

Rovner: Yeah, I think that’s absolutely true. And that’s something that’s been ratcheting up over the past several years as we’ve seen this mental well-being …

Kenen: The pace of damage to the Earth is faster than the scientists had projected.

Rovner: All right. Well, now we’re going to turn to abortion, which is another place where the public is not happy with how it’s being regulated. Yet a different Gallup poll finds Americans more dissatisfied with U.S. abortion policy than any time in 23 years, with a record 69% of adults reporting dissatisfaction. That includes 46% who want less strict laws and only 14% who say they want more restrictions. Yet the political energy seems like it’s with the anti-abortion side, or am I misreading that?

Ollstein: I think there’s a lot of activity on both sides. I mean, Sandhya mentioned Michigan, and I think that’s a spot — along with Minnesota, where Democrats really won big in this past election and want to use their new state-level power to advance some abortion rights measures. But I think you’re seeing a lot more on the “anti-” side, and you’re seeing a lot more splits within the anti-abortion side over how to restrict abortion, how far to go, what kind of exemptions to include, if any. And so you’re seeing a lot more debate, whereas the left, who wants to protect abortion rights, seems a little bit more unified on what they want to do right now. And then, like guns, the federal level is pretty stalemate, roadblock. Nothing much is going to happen there.

Rovner: But also, I think it’s that, you know — and I’m as guilty of this as anybody — that the journalists would rather cover squabbles than people who are actually together. So maybe it’s getting a little more ink. Well, it continues to look like a single federal judge in Texas might well try to ban the abortion pill. mifepristone nationwide. Trump appointee Matthew Kaczmarek did not rule as expected last week in a case charging FDA with wrongly approving the drug 22 years ago. Rather, the judge gave the parties two more weeks to submit briefs, which seems to have prompted every party with the least bit of interest in this case to file amicus briefs. I have never seen anything like this at the federal district court level. It looks like a major Supreme Court case, but it’s not. Has anybody else seen anything like this? I mean, this case seems to be taking on as much importance as your average big Supreme Court case.

Ollstein: It very well could be a Supreme Court case in the future. And I think that’s reflected there, too. And I also want to note that part of the reason for the couple of weeks of delay the judge ordered was to allow the drugmaker to have time to submit arguments because the drugmaker, Danco [Laboratories], says that the different parties in the suit, even the FDA, aren’t really representing their interests and they want to argue for the right to market their product. So that’s pretty interesting. But then, yeah, you have the attorneys general, Democrats, and Republicans lining up on either side of the case. The Republican attorneys general saying, “We support banning this medication nationwide” and the Democratic attorneys general saying, “No, let’s trust the FDA and their scientific process to approve this drug.”

Kenen: I mean, I think there’s sort of a significance in how it’s described because you can say, well, Congress gave the FDA the power to approve drugs. But the anti-abortion movement does not call this a medication abortion. They call it chemical abortion. And therefore, they’re treating this not as a drug but as a lethal chemical. You know, whether the judge goes along with that thinking … we know he’s a strongly anti-abortion judge. There’s no question. And there’s a widespread anticipation that he is going to rule with the anti-abortion side. But we never know what a judge is going to do until a judge does it. And Alice has covered this much more closely than I have, so she’ll probably want to weigh in more. But the issue is, is he going to think that the court should overrule the FDA or is he going to think this is a, quote, “chemical,” not a, quote “medication,” and therefore that the FDA is irrelevant? And I mean, Alice, you can give a better restatement of what I just said since you’ve written about it.

Rovner: I want to respond to Alice’s earlier point about the drug company wanting to get involved, because the big question here, not to get into too much legal minutiae, is why did the people who are suing have standing to sue? They have not been injured by the ability to sell this drug for 22 years. No one’s making them buy it. Arguably, the only party that has standing is the drug company, because if it was cut off, they would lose money. They have an obvious injury here. So the legal niceties of this may not go together either. Alice, do you want to do a follow-up?

Ollstein: Yeah, I mean, to go to the standing issue, the people challenging the FDA approval here are conservative doctors who say that they’ve had to do follow-up treatment for patients who’ve taken the abortion pill and then need follow-up treatment, and that takes their time and attention away from treating other patients. I mean, doctors treating a patient, that’s kind of their job. So I think there’s definitely a question on harm and standing there. Just a couple of thoughts on the case. Abortion rights groups both say that this could be an absolute crisis, disaster across the country. But then they also point out that people will still be able to have medication abortions because the two-pill regimen that’s been used for 20 years, it can still work with just the second pill. So this case is about banning the first pill. The different providers who have spoken out say we’re preparing to just provide abortions via the second pill, if needed.

Rovner: And that second pill, misoprostol, is not going to be pulled off the market. It’s used for many, many things. It just happens it also can end a pregnancy.

Ollstein: Exactly. Way harder to ban. And that’s one thing. Medication abortions will still continue if the judge rules how people expect him to. You know, another thing with all the amicus briefs and the drug company intervening as people are bringing up, if we allow someone to come in 20 years after the fact and challenge FDA approval of something, doesn’t that open Pandora’s box to people challenging all kinds of things, I mean, vaccines and whatnot? And won’t that cause chaos and not make drug companies feel like they can trust the process and have confidence in bringing drugs to market in the U.S.? So that’s another piece of the puzzle as well.

Raman: I would add that there’s already a little bit of chaos because, you know, whatever ruling we have, likely later this month, is almost definitely going to be appealed and then probably appeals again. So it’s going … we could have a back-and-forth process where providers might go one way and then the other. And then, in the contingency stuff they’ve been doing, piggybacking on what Alice was saying, is that if they do this misoprostol regimen, it’s not as straightforward as the two-dose that you’re used to in that there are different amounts of dosage, you might have to do repeated dosages. It’s not as simple, even if that’s done in a lot of other parts of the world. And then some providers have said that they would also just switch to doing all surgical abortions. But that also is more timely. You’d have to do the whole thing in clinic rather than send someone home with the pill. And then that is going to take longer. You’re going to schedule fewer patients. There’s already that many different contingency plans that these clinics are going to have to do regardless of what we hear down the line and through the appeals process.

Rovner: We already know that clinics are backed up from women coming from other states. So patients are having to wait longer to get abortions. And, you know, as … it gets further along, you have to do different procedures that are more expensive. It’s already piling up in different places. Well, speaking of some other different places, we’re seeing a lot of national pro- and anti-abortion groups getting involved in a Wisconsin Supreme Court election, of all things. What is up with that?

Ollstein: Well, that could decide the fate of abortion access in that state. You know, you have the split of a Democratic governor and a Republican legislature. So things really could come down. You know, the state had a pre-Roe ban that went into effect. So things are expected to come down to the makeup of the Supreme Court. And so you’re having just tons of outside money being poured into this race for that reason and really putting a spotlight on how much power are these state supreme courts have. And it’s true in other states as well. And there are many cases pending in different states. You know, I’ve been following the Kentucky one, in particular, but there are a bunch of different cases pending before a state supreme court that could really re-legalize or maintain the ban on abortion.

Kenen: There are also election issues and, on abortion, in the state of Wisconsin, election rules, election certification issues that it’s one of the three or four states where that’s really a hot potato. And that’s another reason this race is getting so much attention. I mean, it’s the state Supreme Court race that’s getting a huge amount of national attention and national money. So there are several issues I would agree with Alice on. The No. 1 is probably abortion. But it’s not only abortion.

Raman: And it’s interesting because this is the first time that EMILY’s List has endorsed ever a state Supreme Court race. And I think another thing to consider is that, you know, this is still considered a nonpartisan race since it’s a court seat. I mean …

Rovner: In theory.

Raman: In theory, yes. Even though all of these groups are looking at the histories of how people have ruled in the past. But I think that’s another thing that makes it a little bit more interesting given it’s not strictly a Democrat or Republican endorsement, like a lot of the other things that we’ve been following.

Rovner: Yes. And I saw on the other side the Susan B Anthony List, the anti-abortion group, said … put out a press release this week saying they’re going to have six-figure spending in Wisconsin on this race. So …

Kenen: It’ll be very good for the Wisconsin economy.

Rovner: It will be very good for the Wisconsin economy. Well, anti-abortion lawmakers are busy in a bunch of states pursuing another new trend, giving tax breaks to so-called crisis pregnancy centers that, at least when abortion was legal, lured pregnant women in by pretending to be an abortion clinic and then trying to convince them not to terminate their pregnancies. Missouri has already allowed donors to these crisis pregnancy centers to write off contributions on their state taxes. Now, Kansas, Arkansas, and Oklahoma are considering similar programs, but Kansas is the only one of those states where abortion is still legal. What are CPCs going to do now that they can’t pose as abortion facilities?

Raman: I think there’s still a lot of confusion for folks. I mean, given how a lot of these laws have been changing back and forth. I mean, even as folks that follow this very closely, there’s so many different things where someone … I think we’ve looked at polling before where people don’t always know: Is abortion illegal or not legal in our state? Or at what point? It’s difficult to keep track of, with so many changes going back and forth. So I think that there could feasibly still be people who might be looking for an abortion that don’t understand or — we’ve seen that a lot of these clinics have also bought a lot of ads so that you might be searching for an abortion and you get redirected to one of these clinics. So I think there’s still overlap in folks that might be searching for one and end up at another.

Kenen: I don’t know how much online presence they have, because that could be across state lines. You know, if someone’s on or near a border, there’s all sorts of … people might think that surgical abortions are legal, but medication is not, or that they can or someone could help them order pills. You can never underestimate how confused Americans are about any number of things. So … but they also might …

Rovner: This is confusing, to be fair.

Kenen: Yes. But they also might concentrate their efforts less on the no-abortion states and move more to the abortion states. Or they may advertise in ways that captures or attempts to capture people who are looking to go out of state or to get a cross-state-line prescription, whatever. They can promote themselves in different ways. Or they may also just decide to not do as much in Texas and do a lot more in upstate New York. I mean, I don’t know how they’re going to totally respond to the legal landscape either.

Ollstein: Yeah. And they’ve also become sort of a legal force of their own. I know they’re involved in challenging some of California’s pro-abortion rights policies. The CDC is specifically. So they also have … are trying to play a role on that front, in addition to direct patients’ interface or however we want to phrase it.

Rovner: All right. Well, while we’re talking about patients’ privacy, I want to talk about data. First, a kind of terrifying story from The Washington Post this week details how data brokers have been selling the names and addresses of people with depression, anxiety, and other mental health disorders so they can be advertised to. A lot of this has come from people using mental health apps or websites that are not covered by the HIPAA privacy rules because they are not technically covered health entities. A separate story this week notes how Virginia Gov. Glenn Youngkin helped defeat a bill in the Virginia legislature to provide legal protections to women’s menstrual data contained in period tracking apps. A Virginia official who was opposing the bill said it would put limits on search warrants, which could lead to other problems down the road. One researcher described the privacy practices of the vast majority of mental health apps as, quote, “exceptionally creepy.” How concerned should we be about all of this?

Kenen: I found that really horrifying. And a family friend who had been looking for a therapist and I said, well, maybe — and they were having trouble finding somebody in network and it’s very expensive — and I said, “Well, maybe you should look into some of the online ones that do take insurance.” And after reading that, I told that person, “I’m not so sure that it’s a good idea.” And we do have a shortage of mental health providers in this country. We have an even greater shortage of mental health providers that take insurance. There’s been a lot of talk about how telemedicine for mental health is at least part of the answer. But this should really raise … because they’re not just selling de-identified data. Some of them in that article were selling people’s names, address, diagnosis, and medical history. If it was truly, truly, truly de-identified, it’s different then. And that can be used for research. But a lot of what’s so-called de-identified isn’t de-identified. And this doesn’t even pretend to be. This is, like, search, and you can find out who the person is, an awful lot of intimate detail about their lives. So unless there’s some real safeguards, would you want any of your medical data with your name on it being sold? No. It is. It is being. But …

Rovner: When the HIPAA rules first went into effect, which was around the year 2000, actually  it took a few years — researchers came to Capitol Hill screaming because they were afraid they weren’t going to be able to get any of this de-identified data and they weren’t going to be able to continue to do research. Now, we seem to have gone far in the other direction. And I know that there are efforts on Capitol Hill to do things to update the women’s reproductive information, keeping that private. Anybody think that they might get into an expansion of HIPAA? I mean, that’s really all it would take would be to create more covered entities.

Raman: Yeah, it isn’t as much about the expansion of HIPAA, but there have definitely been pretty concerted efforts to get … the U.S. doesn’t have a comprehensive data privacy law. You know, in contrast to, like, the EU or something. And that has been a big effort for the lawmakers that are focused on tech policy for a while. Even the hearing earlier this week with Senate Judiciary, they brought up several bills. And the issue has been that all of these issues are bipartisan, folks are on board. It’s just not enough people are on board, and little things that have been getting in the way there. And so that has been an issue. And I think even during that hearing, we had one researcher bring up different sites — like NEDA, which is mentioned in some of these lawsuits by some of the hospitals — have been collecting all of this data. But then they, as researchers, are not able to get access to that data, and that would be extremely beneficial for them to be able to say this is what the impact of some of these things are on kids. So it’s a Catch-22 where it’s, like, OK a) we’re not having the research be able to get the data, b) we’re having it sold in a malicious way and c) we haven’t been able to find a solution to mitigate all of this.

Kenen: Yeah, I don’t know about the prospects for a gigantic tech bill because it has many components and they’re controversial and hard to get 60 votes for. But I think there’s a difference between selling stuff about who bought shoes versus someone who is on an anti-psychotic or an antidepressant or whatever, or getting marital counseling, whatever. I mean, these are not the same issue as the whole constellation of tech issues. I can see this being something bipartisan. HIPAA has been updated a little bit, but the fundamental HIPAA law dates back to what, ’96, Julie? … I think that’s when it was.

Rovner: Yeah, although …

Kenen: It has been updated, but it hasn’t been overhauled to really fit the cyber universe we live in.

Rovner: But also Congress never really did HIPAA. People don’t remember this: The 1996 law basically had a provision that said Congress needs to fundamentally address privacy if we’re going to move more towards digital health records, which at the time was starting to happen. And if they don’t, then the secretary of Health and Human Services is authorized to put out regs. And guess what? Congress didn’t do it. So the HIPAA regs that we have now were put out at the end of the Clinton administration. Congress was never able to come together on this. So now things have obviously gotten worse.

Kenen: Yes. And since the Supreme Court now doesn’t like agencies regulating that, that seems to create an entire new existential question. But do I think that medical privacy is something that you could find some kind of bipartisan lanes on? I don’t think a lot of bipartisan things are going to happen in the next two years. This does seem to be one of the few areas that is not a red-blue ideological issue. And I can see Republicans and Democrats being horrified by some of this and maybe not totally sealing it up, but putting … better guardrails on what can be brokered.

Raman: One of the issues has been, I think even in the past, was that California is the one state that has implemented a few layers of very intense data privacy laws. And so, you know, when you have people in leadership that are in from California and it’s hard to get some of those compromises across when it might be more watered down than something California has and take precedent being federal. So it’s one of the many layers of why it’s been difficult over the past year to get any of this stuff done.

Rovner: Well, we should note that the Biden administration is actually working on some enforcement. Earlier this month, the Federal Trade Commission fined the prescription drug discounter GoodRx $1.5 million for illegally sharing customer’s personal health information. It was the very first enforcement action under a 2009 law that applies to health record vendors and others not covered by HIPAA. So at least there’s one avenue where this could be pursued. I imagine we’ll be seeing more of that if not, you know, whether or not they can reach all of these things seems unlikely.

Kenen: Yeah, doing it piecemeal does not seem to be the approach, and I’m not even sure how much $1.5 million is for GoodRx. I don’t think that’s a lot of money for any major pharmaceutical entity.

Rovner: No. And there are a lot of people who use it. All right. Well, finally this week, while we’re talking about drugs, I’ve been trying to get to this for a while. California has — speaking of California, things that other states haven’t done — California has decided to try to limit the cost of insulin for people with diabetes by manufacturing it itself. Could this set a precedent to really disrupt the insulin market, or is California just so big and wealthy that it’s basically the only state that could do something like this — or only state they would do something like this?

Ollstein: So I will note that Gov. [Gretchen] Whitmer in Michigan has also proposed state manufacturing of insulin. So California might not be the only one. I think the idea is that insulin is pretty cheap to manufacture. It’s become the poster child for out-of-control drug prices for that reason — the disparity between what it costs for patients and what it costs to make is so vast. And so I think you are likely to have a few states. But I think it will take a state doing it successfully to get a significant number of others to follow.

Rovner: I think there might be a thought that because California is so big, it could disrupt the market elsewhere — I mean, in the country. That strikes me as a reach. But it’s, you know, Congress, again — talking about things that Congress can’t do — they managed to limit insulin prices for people on Medicare, but not even for everybody else.

Kenen: There was also a good piece in The Atlantic, maybe two or three months ago, that some of these new diabetic drugs, which are injectables and very expensive, mean you don’t need insulin. So … but by addressing making insulin really cheap, which is a good … I mean so people who are on insulin and need insulin … but there are some people who actually could take one of these other drugs and then they wouldn’t be able to afford these other drugs, which might be better for them. And then they’ll end up on cheap insulin. So it’s always more complicated than it sounds. And I also think there’s different kinds of insulin. Someone else on the panel might, you know, that I’m not sure that …

Rovner: There are lots of different formulations.

Kenen: There are two major kinds of diabetes, obviously, Type 1 and Type 2. And then there’s different patients with different degrees of … you know, how far their other health conditions is advanced, etc., etc. So cheap insulin is not even a solution for diabetes. It’s one part of a solution for one of many chronic diseases in America.

Rovner: Well, we will never not have enough things to talk about. That is the news for this week. Now it is time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at khn.org and in our show notes on your phone or other mobile device. Joanne, why don’t you kick us off this week?

Kenen: Yes. This was a collaboration between NPR, Nashville Public Radio, and Kaiser Health News, aired on NPR by Blake Farmer. “In Tennessee, a Medicaid Mix-Up Could Land You on a ‘Most Wanted’ List.” And basically, Tennessee is cracking down on Medicaid fraud. Most Medicaid fraud is actually from doctors and other health care providers — there have been a bunch of home health scandals and so forth. The amount of fraud and the amount of money involved in patient fraud is small, and yet they’re spending a huge amount of money to try to capture a small amount of fraud. And there are huge mistakes. Like the person in this article was just … she was entitled to Medicaid. She did nothing wrong. But they publicly … like, they don’t even wait for you to be convicted. They’re publishing …  they’re making public the charge. This woman turned out to be … it had to do with an old address on … an expired driver’s license that got the system confused. She was doing nothing wrong, and yet she was completely blacklisted, employment and everything else because she was accused of being a felon in publicly available databases. So, a) are they looking in the right place for fraud? And b) are they protecting people’s rights? Clearly the latter they are not because they were publishing … people were accused but not convicted, and then they weren’t removing it in a timely, effective way. So this woman is, like, unemployable. She can’t rent an apartment, and she did nothing wrong. So there’s a whole series of abuses in this story. Not that Medicaid fraud is a good thing. Medicaid fraud is a bad thing, but this is not the way to go after it.

Rovner: This was one in a series of horrifying stories this week. Alice, you have another horrifying story.

Ollstein: Yes. Although this is under the banner of more evidence to bolster the upsetting things that we sort of already knew. This is a really good piece from The New York Times, laying out a lot of data to show that there is these differences in maternal mortality between Black and white women that can’t be attributed to income, showing that even wealthier Black women still face much worse outcomes. And so they say, you know, even when you account for income, even when you account for education and a lot of other factors, there are still these impacts of structural racism in the health system that continue to put Black mothers more in danger. And so this is coming at a time when there’s a lot of focus on this. But there has been sort of a lot of focus on the income, socioeconomic side and people recommending that states expand postpartum coverage of Medicaid. And that certainly is recommended, and experts think that would help. But this shows that it won’t completely solve the problem and there are other factors to address.

Kenen: And it’s not just in maternal mortality. I mean, the racial disparities in health care are not just income-related.

Rovner: And finally, Sandhya, you have a story from one of our fellow podcast panelists.

Raman: Yeah, the story I picked is “Zantac’s Maker Kept Quiet About Cancer Risks for 40 Years,” and that’s at Bloomberg News from Anna Edney, Susan Berfield, and Jef Feeley. And this was a really great story about Zantac, the heartburn and reflux drug that was once one of the world’s best-selling prescription medications. And then in 2020, it was pulled off the U.S. market over cancer risks. And the article goes through how since its beginnings, Glaxo’s own scientists, the drugmaker, had warned that it could be dangerous, but proving some of this has been a little difficult. … But the story goes through some of the documents that show that Glaxo chose not to look into this, even though the leading health agencies — EPA, FDA, WHO — all say NDMA is a carcinogen.

Rovner: Yeah, it’s quite the investigation. Well worth reading. Well, my story is a little less horrifying than everybody else’s. It’s from my former NPR Science Desk colleague Michaeleen Doucleff and it’s called “Is the Deadly Fungi Pandemic in ‘The Last of Us’ Actually Possible?” And I will cut to the chase. The answer is most almost certainly no. But that’s not to say we shouldn’t be worried about fungi and fungal diseases, particularly as the Earth continues to warm, which is what touches off the pandemic in the video game/HBO miniseries that’s airing now. There are new fungal diseases that can be pretty nasty, too, but zombies, almost certainly not. Well, maybe, certainly not. Anyway, listen to or read Michaeleen’s story. Before we go, this week was Valentine’s Day and, as promised, we have the winner of KHN’s best health policy valentine, as chosen by our editors and social media staff. This year’s winner is Jennifer Goldberg, and it goes as follows: “Roses are red, candy is sweet. Adding #Dental to #Medicare makes it more complete!” Congrats to Jennifer and thanks everyone for your creative health policy valentines.

OK, that’s our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review — that helps other people find us, too. Special thanks, as always, to our ever-patient producer, Francis Ying. As always, you can email us your comments or questions. We’re at whatthehealth — all one word — @kff.org. Or you can tweet me. I’m @jrovner. Joanne?

Kenen: @JoanneKenen

Rovner: Sandhya?

Raman: @SandhyaWrites

Rovner: Alice.

Ollstein: @AliceOllstein

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

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

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