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

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

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

The impulse faded, but the pain remained.

He was lost.

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

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

Psychedelic mushrooms, he hoped, could change his life.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

He started reading. What he learned shocked him.

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

Tears spilled down his face.

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

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

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

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

Each would be asked to share something from their journey.

***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I’d say yes.”

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

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

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

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This story can be republished for free (details).

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

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

Dan Weissmann

@danweissmann

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

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

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

Dan: Hey there–

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

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

She said, thanks.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fair enough.

So here’s who we’ve got.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

$303,000

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And this became something the jury had to decide:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mike McConnell: Good morning.

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

Justice Gabriel wasn’t convinced.

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

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

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

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

Dan: Here’s justice Melissa Hart breaking in

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You enter that contract with an actual price term

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

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

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

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

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

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

Yes!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here’s what happened when I tried this.

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

It has stuff about financial responsibility.

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

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

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

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

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

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

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

So that’s what Cindi wrote on her printout.

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

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

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

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

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

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

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

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

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

Till then, take care of yourself.

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

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[UPDATED on April 18]

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

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

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

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

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

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

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

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

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

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

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

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

An Injection of Marketing

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

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

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

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

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

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

Speaking From Experience

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The Host

Julie Rovner
KHN

@jrovner

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

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

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

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

Panelists

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Amy Goldstein
The Washington Post

@goldsteinamy

Read Amy's Stories

Rachel Roubein
The Washington Post

@rachel_roubein

Read Rachel's stories

Among the takeaways from this week’s episode:

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

Also this week, Rovner interviews Daniel Chang, who reported and wrote the latest KHN-NPR “Bill of the Month” feature about a child who had a medical bill sent to collections before he started to learn to read. If you have an outrageous or exorbitant medical bill you want to share with us, you can do that here.

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

Julie Rovner: New York Magazine’s “The Shared Anti-Trans and Anti-Abortion Playbook,” by Irin Carmon.

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

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

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

Also mentioned in this week’s podcast:

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

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Transcript: The ‘Unwinding’ of Medicaid

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

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

Julie Rovner: Hello and welcome back to KHN’s “What the Health?” I’m Julie Rovner, chief Washington correspondent at Kaiser Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, April 6, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. We are joined today via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Rachel Roubein of The Washington Post.

Rachel Roubein: Good morning.

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

Amy Goldstein: Good to be back.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: Yeah, Medicare, not Medicaid,

Goldstein: Yes, Medicare.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: That was my next question, Alice.

Ollstein: Ta-da.

Rovner: Tell us about your story about that.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rovner: Until she got the bill.

Chang: Exactly.

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

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

Rovner: Yes. So what eventually happened?

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

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

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

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

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

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

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

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

Chang: That’s correct.

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

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

Rovner: Get it all in writing.

Chang: Yes.

Rovner: Daniel Chang, thank you so much.

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

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

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

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

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

Rovner: Yeah, it is. Rachel.

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

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

Roubein: @rachel_roubein.

Rovner: Alice?

Ollstein: @AliceOllstein.

Rovner: Amy?

Goldstein: @goldsteinamy.

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

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

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

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

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

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

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

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

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

The OIG declined to comment.

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

KHN found:

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

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

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

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

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

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

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

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

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

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Jessie Hellmann
CQ Roll Call

@jessiehellmann

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Sarah Karlin-Smith
Pink Sheet

@SarahKarlin

Read Sarah's stories

Alice Miranda Ollstein
Politico

@AliceOllstein

Read Alice's stories

Among the takeaways from this week’s episode:

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

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

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

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

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

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

Also mentioned in this week’s podcast:

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

click to open the transcript

Transcript: Judging the Abortion Pill

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

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

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

Alice Miranda Ollstein: Good morning.

Rovner: Jessie Hellmann of CQ Roll Call.

Jessie Hellmann: Hello.

Rovner: And Sarah Karlin-Smith the Pink Sheet.

Sarah Karlin-Smith: Hi, Julie.

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

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

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

Ollstein: Exactly.

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

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

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

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

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

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

Rovner: It’s a stomach ulcer drug.

Ollstein: Exactly.

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

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

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

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

Rovner: How the tech companies react.

Karlin-Smith: Right. I think we already have seen that doctors who take oaths and hold certain ethical standards to protect people’s health and life have felt like they’ve been put in very challenging situations between the law and what the best care they normally provide for their patients with abortion. So if doctors feel this way, if regular people feel like they’re also going to be on the hook for something, I would be more concerned, in the sense that regular people would feel even less protected. The medical providers, which tend to work for companies that have, you know, lawyers to help them guide them through their decision-making. And, you know, they have various types of insurance as well to help them through this stuff. So it does seem like it could have a big chilling effect if this ex-husband wins in any way.

Rovner: Yes. I mean, the point here is to just further isolate women who are pregnant and don’t want to be, for whatever reason, from reaching out, not just to medical providers, but to their friends, or at least, I guess, reaching out in some way other than in person. We will see how this one plays out. All right. Well, let’s talk about covid, which we haven’t done for a while. First, the reignited fight over the lab leak versus wet-market-origin theory. I have studiously tried to steer away from this because the one thing just about every expert agrees on is that we will probably never know for sure where covid-19 came from. And to quote Michael Osterholm, the esteemed epidemiologist at the University of Minnesota, we have to be prepared for the future for both events: another spillover event and for the lab leak. Still, the House moved forward with a bill this week, already passed by the Senate the week before, to require the declassification of some intelligence related to covid’s origins. Jessie, you covered it. What would the bill do? And is … do we think the president is going to sign this?

Hellmann: So the president hasn’t said yet if he will veto it, but if he does, it would be his first time vetoing something, if I’m not mistaken. So it could be a bad look if he does decide to make that decision. It passed the House 419 to 0. There were 16 non-voting members. It passed the Senate unanimously a few weeks ago, so I can’t imagine that he would veto it. And, basically, what the bill does, it would require the director of national intelligence to declassify information on covid-19 origins within 90 days and send the declassified report to Congress. It’s not clear how much that will illuminate. There’s so many questions about this. The intelligence community is still pretty divided on this issue, despite the Department of Energy, intelligence community saying a few weeks ago that they think it could have arose from a lab leak, though they said that with low confidence. So, it’s not really clear what information we’ll get from this.

Rovner: And this is just basically Congress saying, well, we don’t know, but we want to know what you know.

Hellmann: Yeah.

Rovner: Is that basically where we are?

Hellmann: Exactly. And there’s also, like, a lot of hearings going on right now in Congress where they’re starting to bring people and talk about this. And I think last week, or was it this week, a select committee had a closed meeting with the Department of Energy about their report. So there’s definitely a lot of interest in this.

Rovner: We will definitely see how this plays out. Well, another thing, we are still fighting about, three years in, the efficacy of masks. A couple of weeks ago, the gold-standard scientific organization, the Cochrane Review[s], put out a meta-analysis of mask studies conducted over the years that concluded there was not sufficient evidence to demonstrate that masks help stop the spread of respiratory illnesses. Well, as so often happens with conditional findings like those, mask opponents immediately trumpeted that the study shows that masks don’t work, which is not what the study showed. Now, in a fairly rare step, the editor of the Cochrane Review herself has posted a clarification of the summary of the study, which we will post in the show notes, but I will quote from it: “Commentators have claimed that a recently updated Cochrane Review shows that, quote, ‘Masks don’t work,’ quote, which is an inaccurate and misleading interpretation.” So what’s that line again? A lie travels around the world before the truth can even get out of bed. Is that where we are with masks now? We’ve gotten to the point where there’s this huge belief that masks don’t work. And the fact is, like the origin of covid, we don’t actually know.

Karlin-Smith: I think that the “don’t actually know” is maybe not the best way to put it. There are things we do know, and that’s some of what, you know, has tried to be clarified in the past week or so from this, although there is that ultimate question of: Is it too little, too late, and are people already sort of set in their views? And that’s the sort of thing for different types of researchers to figure out in terms of how you convince people of various evidence and stuff. But, you know, I think one line that stuck out to me is, in The New York Times piece, trying to dissect the nuance of this review. And it is really nuanced and you really have to appreciate those nuances. You know, they say is what we learn from the Cochrane Review is that particularly before the pandemic, distributing masks didn’t lead people to wear them. And thus, if a mask is going to work, but you don’t wear it, it’s not going to work. And you know, people who have been sort of anti-mask to some degree have said, well, but that does show masks don’t work, because if we can’t get people to wear masks, what does it matter? Of course, for people that want to wear a mask or, you know, are comfortable wearing a mask, there’s also plenty of evidence that shows well-fitting, quality masks will block covid. So you shouldn’t think on an individual level, “Let me throw away my N95. It’s not doing me any good.” It certainly is doing you good. And we have, you know, laboratory research and other research to prove that. So, you know, The New York Times did a really good job of dissecting what was really studied, how much was studied, pre-covid, post-covid, what they looked at, and to try and help people understand where we’re at, which is definitely, again, that there can be benefits to wearing masks. There are differences in population benefits versus individual benefits. And when you think about the population benefits, too, sometimes I think you also have to think about even small, subtle benefits on a population level can make a big difference. So even if mask-wearing isn’t the be-all and end-all some people maybe want you to think about, but it helps lower transmission and lowers cases on a population level, you know, that can translate to hundreds of thousands or even millions less cases, which can then lead, you know, to whatever corresponding number of deaths. So I think it’s also thinking about that, you know, something doesn’t have to be 100% effective in stopping transmission to be really valuable on a societal level.

Rovner: They could have summarized it as “Masks don’t work if people don’t wear them, and it’s hard to get people to wear them.” That would have been accurate. Right?

Karlin-Smith: But the other question is: How do we figure out how to get people to wear them if they do work?

Rovner: Well, but that’s not what this study was about.

Karlin-Smith: Right.

Ollstein: I found this whole reaction really depressing. And it’s been huge on Capitol Hill. It’s been coming up at all of these hearings with Republican members citing this and flatly declaring that it shows that masks don’t work, using it to go after officials like CDC Director [Rochelle] Walensky and excoriate her for recommending masks. And it just feels like we’ve learned nothing. Like Sarah was saying, we have not learned the difference between individual and population-level benefits. Everything is so black and white. Either something is completely effective or completely ineffective. There’s no nuance around reducing risk, and everyone keeps talking about how the next pandemic is inevitable. And it just feels like we absolutely have not learned anything from this one.

Rovner: Yeah, if you’d asked me three years ago where we would be in three years, this is not the place I would have predicted. Speaking of covid misinformation, this week the directors of the Food and Drug Administration and the Centers for Disease Control and Prevention took the rare step of writing a joint letter to Florida Surgeon General Joseph Ladapo — I assume that’s how he pronounces his name — warning that his claims that the covid vaccine is causing an upswing in adverse events are, quote, “incorrect, misleading and could be harmful to the American public.” Sarah, I’ve never seen a joint letter from the FDA and the CDC, certainly not to a state official. I mean, they must have been very unhappy about this.

Karlin-Smith: Yeah, I think it was a unique step. But also, Robert Califf at the FDA has made going after what he calls, you know, scientific misinformation, a key part of his commissionership. He often makes the claim that he feels like misinformation is what is killing so many Americans. So it wasn’t surprising in the sense that he felt the need to publicly respond in this way, particularly when you have an individual of such high stature in the state making claims that he feels are potentially dangerous to people. And a lot of what the Florida surgeon general said, again, has a little nugget of truth, but has largely been debunked in the way he’s framing it. So, yes, we do know there is some risk of these myocarditis, these negative heart effects from these covid mRNA vaccines. But we also know that getting covid actually poses a higher risk of these heart events. So it’s a trade-off that most people argue you would prefer to go with the vaccine than that. And so, the fact that, you know, you have such a high-level health official in a state perpetuating anti-vaccine sentiments, I think is why you see Califf and Walensky really feeling like they had to respond, though I’m a little bit perplexed as to why they decided to do it at this particular moment. But I think it’s because he actually addressed them first with a letter. But, you know, this surgeon general has been doing this for a while now.

Rovner: He’s been the surgeon general for a while, and he’s been saying things outside the mainstream, shall we say, for a while. Well, I want to turn to drug prices because there’s a lot of news there, too. Another one of the big three diabetes drugmakers, Novo Nordisk, has followed Eli Lilly’s lead in announcing it will slash the cost of many of its insulin products by up to 75%. First question, how much pressure will this put on Sanofi, the last of the drug companies that dominate the diabetes drug market? Are they almost inevitably going to follow?

Karlin-Smith: I think most people think it is inevitable, although maybe not for the reasons we’re all thinking. Some of it is just that peer pressure. But a big thing that sort of comes out in this: Sean Dickson, to give him credit, at West Health was sort of the first person I saw point this out. There’s changes in the law related to Medicaid rebates and what these companies will essentially, you know, the discounts they have to give Medicaid coming up, that when you raise your prices faster than inflation, because these insulin products have had their prices raised so much over the years, they were going to have to start owing the government money soon for their drugs instead of the government reimbursing them. So that’s seen as really probably one of the key reasons why these changes are happening when they’re happening, which is not to, like, take any credit away from all the advocates who have pushed for lower insulin prices over the years. Certainly, this law and regulation that was passed was designed, in fact, to motivate companies to do this. So, you know, there’s a cynical way of looking at it, and there’s another way of working at it. But, you know, I do think most people expect Sanofi to follow through, particularly if they think it’s going to impact their formulary placement, in terms of how they compete with these products. But then also just, you know, from a PR perspective, it’s not going to look good for them to be that last holdout.

Rovner: But this sort of leads to my next question. I haven’t seen anybody mention this yet, but I can’t help but think that particularly Lilly and Novo Nordisk are happy to cut the prices on insulin and get lots of good press, as you point out, because both of them are sitting on giant blockbuster drugs to treat obesity. Novo already has FDA approval for Wegovy, which is the same drug as its diabetes drug Ozempic, just in a larger dose. While Lilly already has the diabetes drug Mounjaro, whose clinical trials for obesity have shown it may be even more effective than Wegovy in helping people lose weight. Am I missing something here, or are these companies about to make a killing on other drugs?

Karlin-Smith: No, I mean, that’s one point. And I think, you know, Novo Nordisk is more reliant on insulin and diabetes products in general than Eli Lilly and Sanofi, which have broader profiles. But one thing to note is most of the insulin drugs that are getting list price cuts are older insulin. So, you know, Novo Nordisk notably did not cut the price of one of their newer insulins … in their announcement this week. So again, you have to look at which particular products they’re cutting and why. But there’s big concern about how the use of some of these diabetes medicines to treat obesity will impact budgets because such a large percentage of the U.S. population is overweight.

Rovner: You’re just getting to my next question.

Karlin-Smith: That’s what … I assumed you were thinking of this Medicare issue. Right now Medicare does not cover drugs for weight loss, but the thought process is, if they change that, because these drugs are much more effective than prior weight loss drugs have been, you know how will Medicare pay for these? So that’s another big drug pricing debate coming down the pike.

Rovner: I was just going to say, I mean, this is the thing that I’ve been thinking about, you know, and I guess the complication with Medicare … there’s a piece in the New England Journal of Medicine this week by a bunch of drug price researchers that said, well, maybe the cost-benefit for Medicare wouldn’t be quite as good as it would be for the younger population, because obesity is not such a factor for shortening your life if you’re over 65 than if you’re under 65. But as others point out, it’s unlikely that private insurers are going to start covering this medication if Medicare doesn’t. So you’ve got this sort of place where you’ve got these very promising drugs that are currently very expensive, many in the neighborhood of $1,300 a month, which is not what most people can afford, if insurance isn’t covering it. But the promise of working … and you’ve got all these rich people buying it from heaven-knows-what doctor. So there is actually a shortage. But this is expensive enough that if they can’t push the price down, it has the potential to really impact the entire cost of the health care system. Right?

Karlin-Smith: Right. I’ve seen people writing about this the way we were talking about the Alzheimer’s drugs if Medicare was decided to cover it for all patients who qualify for Alzheimer’s, some of the drugs that came out, how they would essentially have to raise premiums and the implications there. They remind me also of, a number of years ago now, when some new cholesterol-lowering medicines came out that were really pricey. And what would happen to Medicare if they got prescribed and used widely? That, of course, didn’t happen. In part, perhaps, because payers curtail these to some degree. This is going to become a really interesting public discussion because the costs issue, but it’s also sort of about how we think about obesity and weight loss. And for a long time, there’s been sort of a stigma attached to weight loss and weight loss products and people not thinking about it as a medical condition, something where you really need to try other things before you get a medicine or get a medical procedure. It’s sort of a personal failure, a cosmetic issue, issues of self-control … and the fact that these drugs are much more successful than previous weight loss medicines, which tended to not help people lose very much weight and had a lot more side effects, some of them were fairly dangerous.

Rovner: And got pulled off the market.

Karlin-Smith: Right.

Ollstein: For killing people.

Karlin-Smith: You’re going to confront a lot of issues head-on in figuring out how to deal with this, because it’s not just about price. It’s sort of thinking about what we consider a disease and what we’re willing to treat as a medical condition.

Rovner: Yeah, I think this is going to be a really big debate going forward. Well, you mentioned Alzheimer’s. And speaking of Alzheimer’s, the Veterans [Health] Administration has announced that it will offer patients with Alzheimer’s disease, that newest Alzheimer’s drug, Leqembi, is that how you pronounce it? It received accelerated approval from the FDA in January. That means more evidence needs to be presented to assure its safety and efficacy. Sarah, is this drug really better/safer than Aduhelm, which it’s a chemical cousin of, right? And that’s the one that we had all the fighting over last year. So what do we think Medicare is going to do with this drug?

Karlin-Smith: So we do have some evidence that this drug does seem to be an improvement over Aduhelm, even though Leqembi only got an accelerated approval so far from the FDA. FDA is already evaluating the drug for full approval because in that interim between when they filed the accelerated approval, they actually pretty much wrapped up a Phase 3 clinical trial that looked at outcomes and did show some benefit on cognition and so forth. There’s certainly a debate out there as to how meaningful that benefit was, but they have shown a hard clinical benefit in trials, not just changed a laboratory marker that is predictive of Alzheimer’s. So that is significant for the company. But it’s just that FDA and then I think CMS hasn’t really considered that further data yet. And so I think there is a good chance that if FDA grants the drug full approval, which I think is pretty likely, will reconsider it, and they maybe were just sort of buying them some time because, again, it is going to be a bit of a challenge to figure out how to operationalize this. The VA, if you compare to Medicare, I was looking yesterday, you know, the VA probably has a few hundred thousand people that might qualify for this drug versus Medicare potentially has upwards of 6 million or so forth. So the different budget process and the VA also has more ability to negotiate drug prices with the company than Medicare does right now for this particular product.

Rovner: So very first-world problems. We finally have drugs to treat things that we’ve been trying to treat effectively for a long time, except that we can’t afford them. So we’re going to … I imagine this debate is going to also continue. Well, finally this week, I wanted to talk briefly about the practice of medicine and the role of the federal government, even though that’s sort of what we’ve been talking about this entire time. Jessie, you wrote about the Biden administration’s rules barring noncompete clauses in employment this week. Obviously, this is something that transcends health care. Apparently, even Starbucks doesn’t want its trained baristas going to work for local competitors. But how does this affect health care?

Hellmann: Yeah, so from what I’ve heard, noncompetes are really rampant in the health care. Especially between physicians and group practices in hospitals. So I’ve seen a lot of doctors submitting comments to the FTC telling them, and some of these is begging them to finalize this rule. There have been … the American Academy of Family Physicians has come out really strongly in favor of the rule. Basically, the argument is that it contributes to burnout, when doctors can’t leave jobs they’re unhappy in. And it also contributes to workforce shortages. If you’re in a noncompete agreement saying that you can’t work at a competitor within a 10- or 20-mile radius and you’re really unhappy in your job, but you might feel compelled to just go work somewhere else. On the other side, you have the American Hospital Association coming out really forcefully against this rule, which is not a good sign and, obviously, very powerful in Washington. And they’re kind of using the covid pandemic as the impetus to try to block this, arguing that providers are really burned out right now. People are leaving the workforce. We really can’t afford to lose people at this time to competitors, and this will make it harder for us to retain and recruit workers. Both sides are making the same arguments in different ways.

Rovner: We’ll wait on these rules. Well, the other big intra-health care dispute that federal officials are being asked to weigh in on is prior authorization. That’s when insurers make it cumbersome for patients to get care their doctors want them to have. The idea is to prevent doctors from providing unnecessary or unnecessarily expensive care. But doctors say it just throws up barriers that make it harder even to get fairly typical care and puts patients at risk by delaying their treatment. I honestly thought this got taken care of in the Affordable Care Act, which incorporated the provisions of the patients’ bill of rights that Congress had been arguing about for the entire decade leading up to the ACA. But now the Biden administration has proposed rules that would require insurers to at least respond faster to prior authorization requests, although that wouldn’t start until 2026. This is actually one of the American Medical Association’s top issues. Is this just another example of people who are not doctors trying to practice medicine, i.e., the insurance companies, and does the federal government really have a role in all of this?

Karlin-Smith: I think this is a tough issue because usually the insurance companies do have doctors that are trying to make these decisions. What you see are doctors actually in medical practice, not an insurance company, complaining about as they’re often not the peers that they say they are. So, you know, you might have a cardiologist making a decision regarding a prior authorization that relates to something in the orthopedic field. So there’s questions about whether the people that really have enough knowledge are making the calls.

Rovner: Or, God forbid, they have nurses making these calls, too.

Karlin-Smith: But it’s one of these issues that’s really tough because there is a sort of in some cases, I think, a need and a reason to have prior authorization. And it can be useful because not all doctors are willing to, you know, maybe try the cheapest alternative for patients when one does exist. There are some, you know, to use the term, sort of, “quacks” out there that sometimes recommend things that the medical establishment overall would agree you shouldn’t be using on patients. But it’s just that the way this is, like, in the real world, it’s sort of gotten out of control, I guess, in some ways. The best way … where legitimate medical care is being denied, patients are going through prior authorization for refills of prescription drugs they clearly have benefited from and have been on for years. So it’s a tricky situation because there is certainly, for the government, an economic reason to have some degree of prior authorization. It’s just figuring out how to get the good out of it, where it actually can benefit and help, even both protect patients financially and medically without hurting patients, and particularly patients that don’t understand how to navigate the system and push back against bad decisions on prior auth.

Hellmann: There is also a really interesting story in Stat this week about the role of artificial intelligence and algorithms in making some of these decisions. So I do have questions about that. It does seem like I have been hearing more and more from doctors lately about how burdensome prior auth has been. I did a story a few months ago about prior authorization requirements for opioid treatment programs, and providers are saying it takes a long time to get approval. Sometimes you get denials for seemingly no reason, like people who need opioid treatment. Some of these people are really vulnerable, and once you decide you need care, you kind of want to get them at that moment. And they might not want to go through an appeals process. And that’s something that the administration has acknowledged is an issue, too. They say that they’re going to look at it.

Rovner: I remember when most of the health beat was actually refereeing these disputes between pieces of the medical establishment, so … there are other things that the administration is busy with in the health care realm. Well, that is the news for this week. Now it is time for our extra-credit segment — that’s where we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at khn.org and in our show notes on your phone or other mobile device. Sarah, why don’t you go first this week?

Karlin-Smith: I took a look at a story in Allure magazine: “With New Legislation, You Can Expect More Recalls to Hit the Beauty Industry.” And it’s a good explainer on modernizations to FDA’s regulations of cosmetics that passed in the end of the year in Congress. It’s the first overhaul since World War II. They say it gives the FDA some pretty big new authorities, like they can mandate the recall of a beauty product if it’s contaminated. Before they basically just had to beg companies to voluntarily do that, which in many cases companies don’t want products that might harm people to be on the market. But sometimes for whatever reason, they might not move as you want. And so it’s important for FDA to have that authority. You know, it also will do things like disclose common allergens to protect people, gives FDA a lot of new funding to help implement this. You know, I think it’s a pretty big consumer bill and it was kind of like an interesting thing to look at a different part of health policy we don’t often talk about. One thing that the story brings up that’ll be interesting to see and I know has been sort of a tension with leading up to whether this law would ever get passed, was how small companies will be able to handle this, and will it put basically small beauty out of business over big companies that know how to handle FDA and its regulations? So we’ll look to see what happens to your smaller cosmetic brands moving forward.

Rovner: Indeed. Jessie.

Hellmann: My extra credit is a story from The New York Times called “Opioid Settlement Hinders Patients’ Access to a Wide Array of Drugs.” And this is an angle I hadn’t really thought about: That $21 billion opioid settlement came with an agreement that distributors place stricter limits on drug suppliers to individual pharmacies and scrutinized their dispensing activity. But it doesn’t just apply to opioids. It applies to all controlled substances. So we’re seeing medications like Xanax and Adderall get caught up in this. And pharmacies are saying, like, it’s making it hard for them to fill prescriptions for patients and some of whom have had them for a really long time. And I don’t know, like, if anyone else has heard about the Adderall shortage — I don’t know if you would classify this as a shortage — but it’s an angle that I hadn’t really thought of. Like, it might not just be supply-chain issues.

Rovner: Yeah, I’ve heard about the Adderall shortage. I mean, I think there’s been a lot of coverage of that. So, yeah, I thought that was a really interesting story, too. Alice.

Ollstein: Yes. I chose a story by my colleagues up in New York, my colleague Julia Marsh, which is about the debate in New York over a flavored-cigarette ban and how it is dividing the civil rights community. And so, you have some civil rights leaders saying that we should ban menthol cigarettes because they have caused a lot of health harms to the Black community. They have long been marketed in ways that target the Black community. They’re in some ways more addictive than non-flavored tobacco. So they’re in support of this ban. And then you have Al Sharpton and some other civil rights leaders on the other side warning that such a ban and the enforcement of such a ban will lead to more police interaction with the Black community, more targeting, and potentially more deaths, which is what we’ve seen in the past. And so a fascinating piece about some …

Rovner: Deaths from law enforcement. Not from cigarettes.

Ollstein: Exactly. Well, yes, it’s kind of “damned if you do, damned if you don’t” on this issue. But a fascinating look at this and what could be a preview as the debates around this at the national level ramp up. So we’ve already seen this happen in California and some other states. Now, the debate is really hot in New York, but it could indicate some of the arguments we might hear if it really moves forward at the national level.

Rovner: Well, my extra credit this week is the latest episode of our competitor podcast “Tradeoffs,” which you really should also listen to regularly, by the way. It’s called “The Conservative Clash Over Abortion Bans,” and it’s actually by Alice here. And it’s a really close look at those exceptions to abortion bans, like for life or health. That’s something that we’ve talked about quite a bit here, except this looks at it from the viewpoint of how it’s dividing the anti-abortion community, which is really interesting. So, super helpful. Everybody listen to it. Thank you, Alice. OK. That is our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review — that helps other people find us, too. Special thanks, as always, to our ever-patient producer, Francis Ying. As always, you can email us your comments or questions. We’re at whatthehealth — all one word — @kff.org. Or you can tweet me. I’m @jrovner. Alice?

Ollstein: @AliceOllstein

Rovner: Sarah?

Karlin-Smith: @SarahKarlin

Rovner: Jessie.

Hellmann: @jessiehellmann

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

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Yet, when the U.S. Preventive Services Task Force, an independent, influential panel of experts, suggested last year that adults be screened for anxiety, it left out one group — people 65 and older.

The major reason the task force cited in draft recommendations issued in September: “the current evidence is insufficient to assess the balance of benefits and harms of screening for anxiety” in all older adults. (Final recommendations are expected later this year.)

The task force noted that questionnaires used to screen for anxiety may be unreliable for older adults. Screening entails evaluating people who don’t have obvious symptoms of worrisome medical or psychological conditions.

“We recognize that many older adults experience mental health conditions like anxiety” and “we are calling urgently for more research,” said Lori Pbert, associate chief of the preventive and behavioral medicine division at the University of Massachusetts Chan Medical School and a former task force member who worked on the anxiety recommendations.

This “we don’t know enough yet” stance doesn’t sit well with some experts who study and treat seniors with anxiety. Dr. Carmen Andreescu, an associate professor of psychiatry at the University of Pittsburgh, called the task force’s position “baffling” because “it’s well established that anxiety isn’t uncommon in older adults and effective treatments exist.”

“I cannot think of any danger in identifying anxiety in older adults, especially because doing so has no harm and we can do things to reduce it,” said Dr. Helen Lavretsky, a psychology professor at UCLA.

In a recent editorial in JAMA Psychiatry, Andreescu and Lavretsky noted that only about one-third of seniors with generalized anxiety disorder — intense, persistent worry about everyday matters — receive treatment. That’s concerning, they said, considering evidence of links between anxiety and stroke, heart failure, coronary artery disease, autoimmune illness, and neurodegenerative disorders such as dementia.

Other forms of anxiety commonly undetected and untreated in seniors include phobias (like a fear of dogs), obsessive-compulsive disorder, panic disorder, social anxiety disorder (a fear of being assessed and judged by others), and post-traumatic stress disorder.

The smoldering disagreement over screening calls attention to the significance of anxiety in later life — a concern heightened during the covid-19 pandemic, which magnified stress and worry among seniors. Here’s what you should know.

Anxiety is common. According to a book chapter published in 2020, authored by Andreescu and a colleague, up to 15% of people 65 and older who live outside nursing homes or other facilities have a diagnosable anxiety condition.

As many as half have symptoms of anxiety — irritability, worry, restlessness, decreased concentration, sleep changes, fatigue, avoidant behaviors — that can be distressing but don’t justify a diagnosis, the study noted.

Most seniors with anxiety have struggled with this condition since earlier in life, but the way it manifests may change over time. Specifically, older adults tend to be more anxious about issues such as illness, the loss of family and friends, retirement, and cognitive declines, experts said. Only a small fraction develop anxiety after turning 65.

Anxiety can be difficult to identify in older adults. Older adults often minimize symptoms of anxiety, thinking “this is what getting older is like” rather than “this is a problem that I should do something about,” Andreescu said.

Also, seniors are more likely than younger adults to report “somatic” complaints — physical symptoms such as dizziness, fatigue, headaches, chest pain, shortness of breath, and gastrointestinal problems — that can be difficult to distinguish from underlying medical conditions, according to Gretchen Brenes, a professor of gerontology and geriatric medicine at Wake Forest University School of Medicine.

Some types of anxiety or anxious behaviors — notably, hoarding and fear of falling — are much more common in older adults, but questionnaires meant to identify anxiety don’t typically ask about those issues, said Dr. Jordan Karp, chair of psychiatry at the University of Arizona College of Medicine in Tucson.

When older adults voice concerns, medical providers too often dismiss them as normal, given the challenges of aging, said Dr. Eric Lenze, head of psychiatry at Washington University School of Medicine in St. Louis and the third author of the recent JAMA Psychiatry editorial.

Simple questions can help identify whether an older adult needs to be evaluated for anxiety, he and other experts suggested: Do you have recurrent worries that are hard to control? Are you having trouble sleeping? Have you been feeling more irritable, stressed, or nervous? Are you having trouble with concentration or thinking? Are you avoiding things you normally like to do because you’re wrapped up in your worries?

Stephen Snyder, 67, who lives in Zelienople, Pennsylvania, and was diagnosed with generalized anxiety disorder in March 2019, would answer “yes” to many of these queries. “I’m a Type A personality and I worry a lot about a lot of things — my family, my finances, the future,” he told me. “Also, I’ve tended to dwell on things that happened in the past and get all worked up.”

Treatments are effective. Psychotherapy — particularly cognitive behavioral therapy, which helps people address persistent negative thoughts — is generally considered the first line of anxiety treatment in older adults. In an evidence review for the task force, researchers noted that this type of therapy helps reduce anxiety in seniors seen in primary care settings.

Also recommended, Lenze noted, is relaxation therapy, which can involve deep breathing exercises, massage or music therapy, yoga, and progressive muscle relaxation.

Because mental health practitioners, especially those who specialize in seniors’ mental health, are extremely difficult to find, primary care physicians often recommend medications to ease anxiety. Two categories of drugs — antidepressants known as SSRIs (selective serotonin reuptake inhibitors) and SNRIs (serotonin-norepinephrine reuptake inhibitors) — are typically prescribed, and both appear to help to older adults, experts said.

Frequently prescribed to older adults, but to be avoided by them, are benzodiazepines, a class of sedating medications such as Valium, Ativan, Xanax, and Klonopin. The American Geriatrics Society has warned medical providers not to use these in older adults, except when other therapies have failed, because they are addictive and significantly increase the risk of hip fractures, falls and other accidents, and short-term cognitive impairments.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

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

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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.

With Medicare and Social Security apparently off the table for federal budget cuts, the focus has turned to Medicaid, the federal-state health program for those with low incomes. President Joe Biden has made it clear he wants to protect the program, along with the Affordable Care Act, but Republicans will likely propose cuts to both when they present a proposed budget in the next several weeks.

Meanwhile, confusion over abortion restrictions continues, particularly at the FDA. One lawsuit in Texas calls for a federal judge to temporarily halt distribution of the abortion pill mifepristone. A separate suit, though, asks a different federal judge to temporarily make the drug easier to get, by removing some of the FDA’s safety restrictions.

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

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Alice Miranda Ollstein
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Lauren Weber
The Washington Post

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Among the takeaways from this week’s episode:

• States are working to review Medicaid eligibility for millions of people as pandemic-era coverage rules lapse at the end of March, amid fears that many Americans kicked off Medicaid who are eligible for free or near-free coverage under the ACA won’t know their options and will go uninsured.
• Biden promised this week to stop Republicans from “gutting” Medicaid and the ACA. But not all Republicans are on board with cuts to Medicaid. Between the party’s narrow majority in the House and the fact that Medicaid pays for nursing homes for many seniors, cutting the program is a politically dicey move.
• A national group that pushed the use of ivermectin to treat covid-19 is now hyping the drug as a treatment for flu and RSV — despite a lack of clinical evidence to support their claims that it is effective against any of those illnesses. Nonetheless, there is a movement of people, many of them doctors, who believe ivermectin works.
• In reproductive health news, a federal judge recently ruled that a Texas law cannot be used to prosecute groups that help women travel out of state to obtain abortions. And the abortion issue has highlighted the role of attorneys general around the country — politicizing a formerly nonpartisan state post. –And Eli Lilly announced plans to cut the price of some insulin products and cap out-of-pocket costs, though their reasons may not be completely altruistic: An expert pointed out that a change to Medicaid rebates next year means drugmakers soon will have to pay the government every time a patient fills a prescription for insulin, meaning Eli Lilly’s plan could save the company money.

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

Julie Rovner: The New York Times’ “A Drug Company Exploited a Safety Requirement to Make Money,” by Rebecca Robbins.

Alice Miranda Ollstein: The New York Times’ “Alone and Exploited, Migrant Children Work Brutal Jobs Across the U.S.,” by Hannah Dreier.

Rachel Cohrs: STAT News’ “Nonprofit Hospitals Are Failing Americans. Their Boards May Be a Reason Why,” by Sanjay Kishore and Suhas Gondi.

Lauren Weber: KHN and CBS News’ “This Dental Device Was Sold to Fix Patients’ Jaws. Lawsuits Claim It Wrecked Their Teeth,” by Brett Kelman and Anna Werner.

Also mentioned in this week’s podcast:

• Politico’s “Why One State’s Plan to Unwind a Covid-Era Medicaid Rule Is Raising Red Flags,” by Megan Messerly.
• The Washington Post’s “Doctors Who Touted Ivermectin as Covid Fix Now Pushing It for Flu, RSV,” by Lauren Weber.
• NPR’s “To Safeguard Healthy Twins in Utero, She Had to ‘Escape’ Texas for Abortion Procedure,” by Selena Simmons-Duffin.
• The Daily Beast’s “Tennessee Abortion Ban a ‘Nightmare’ for Woman With Doomed Pregnancy,” by Michael Daly.

click to open the transcript

Transcript: March Medicaid Madness

KHN’s ‘What the Health?’Episode Title: Medicaid March MadnessEpisode Number: 287Published: March 2, 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 are taping this week on Thursday, March 2, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So, here we go. We are joined today via video conference by Alice Miranda Ollstein of Politico.

Alice Miranda Ollstein: Good morning.

Rovner: Rachel Cohrs of Stat News.

Rachel Cohrs: Hi, everybody.

Rovner: And we officially welcome to the podcast panel this week Lauren Weber, ex of KHN and now at The Washington Post covering a cool new beat on health and science disinformation. Lauren, welcome back to the podcast.

Lauren Weber: Thanks for having me.

Rovner: So we’re going to get right to this week’s news. We’ve talked a lot about the political fight swirling around Medicare the past couple of weeks. So this week, I want to talk more about Medicaid. Our regular listeners will know, or should know, that states are beginning to re-determine eligibility for people who got on Medicaid during the covid pandemic and were allowed to stay on until now. In fact, Arkansas is vowing to re-determine eligibility for half a million people over the next six months. Alice, the last time Arkansas tried to do something bureaucratically complicated with Medicaid, it didn’t turn out so well, did it?

Ollstein: No. It was so much of a cautionary tale that no other state until now has gone down that path, although now at least a couple are attempting to. So Arkansas was the only state to actually move forward under the Trump administration with implementing Medicaid work requirements. And we covered it at the time, and just thousands and thousands of people lost coverage who should have qualified. They were working. They just couldn’t navigate the reporting system. Part of the problem was that you had to report your working hours online and a lot of people who are poor don’t have access to the internet. And, you know, the system was buggy and clunky and it was just a huge mess. But that is not stopping the state from trying again on several fronts. One, they want to do Medicaid work requirements again. The governor, Sarah Huckabee Sanders, has said that they plan to do that and also they plan to do their redeterminations for the end of the public health emergency in half the time the federal government would like states to take to do it. The federal government has incentives for states to go slow and take a full year to make sure people know how to prove whether or not they qualify for Medicaid and to learn what other insurance coverage options might be available to them. For instance, you know, Obamacare plans that are free or almost free.

Rovner: Yeah. Presumably most of the people who are no longer eligible for Medicaid but are still low-income will be eligible for Obamacare with hefty subsidies.

Ollstein: That’s right. So the fear is that history will repeat itself. A lot of people who should be covered will be dropped from coverage and won’t even know it because the state didn’t take the time to contact people and seek them out.

Rovner: This is something that we will certainly follow as it plays out over the next year. More broadly, though, there have been whispers — well, more than whispers, whines — over the past couple of weeks that President [Joe] Biden’s challenge to Republicans not to cut Social Security and Medicare, and Republicans’ apparent acceptance of that challenge, specifically leaves out Medicaid. Now, I never thought that was true, at least for the Democrats. But earlier this week, President Biden extended his promises to Medicaid and the Affordable Care Act. How much of a threat is there really to Medicaid in the coming budget battles? Rachel, you wrote about that today.

Cohrs: There is a lot of anxiety swirling around this on the Hill. I know there’s a former Trump White House official who’s circulated some documents that are making people a little bit nervous about Republicans’ position. But it is useful to look at existing documents out there. It is not reflective necessarily of the consensus Republican position. And it’s a very diverse party right now in the House. They have an incredibly narrow majority and Kevin McCarthy is really going to have to walk a tightrope here. And I think it is important to remember that when Medicaid has come up on steep ballot initiatives in red states, so many times it has passed overwhelmingly. So I think there is an argument to be made that Medicaid enjoys more political support among the GOP voting populace than maybe it does among members of Congress. So I think I am viewing it with caution. You know, obviously, it’s something that we’re going to have to be tracking and watching as these negotiations develop. But Democrats still hold the Senate and they still hold the presidency. So Republicans have more leverage than they did last Congress, but they’re still … Democrats still have a lot of sway here.

Rovner: Although I’ll just point out, as I think I pointed out before, that in 2017, when the Republicans tried to repeal the Affordable Care Act, one of the things they discovered is that Medicaid is actually kind of popular. I think … much to their surprise, they discovered that Medicaid is also kind of popular, maybe not as much as Medicare, but more than I think they thought. So I guess the budget wars really get started next week: We get President Biden’s budget, right?

Ollstein: And House Republicans are allegedly working on something. We don’t know when it will come or how much detail it will have, but it will be some sort of counter to Biden’s budget. But, you know, the real work will come later, in hashing it out in negotiations. And, really, a small number of people will be involved in that. And so just like Rachel said, you know, you’re going to see a lot of proposals thrown out over the next several months. Not all of them should necessarily be taken seriously or taken as determinative. Just one last interesting thing: This has been a really interesting education time, both for lawmakers and the public on just who is covered under these programs. I mean, the idea is that Medicare is so untouchable, is this third rail, because it is primarily seniors, and seniors vote. And seniors are more politically important to conservatives and Republicans. But people forget a lot of seniors are also on Medicaid. They get their nursing home coverage through there. And so I’ve heard a lot of Democratic lawmakers really hammering that argument lately and saying, look, you know, the stereotype for Medicaid is that it’s just poor adults, but …

Rovner: Yeah, moms and kids. That was how it started out.

Ollstein: Exactly.

Rovner: It was poor moms and kids.

Ollstein: Exactly. But it’s a lot more than that now. And it is more politically dicey to go after it than maybe people think.

Rovner: Yeah, I think Nancy Pelosi … in 2017 when, you know, if the threat with Medicare is throwing Granny off the cliff in her wheelchair, the threat of Medicaid is throwing Granny out of her nursing home, both of which have their political perils. All right. Well, we’ll definitely see this one play out for a while. I want to move to the public health beat. Lauren, you had a really cool story on the front page of The Washington Post this week about how the promise of ivermectin to treat infectious diseases in humans. And for those who forget, ivermectin is an anti-wormer drug that I give to my horse and both of my dogs. But the idea of using it for various infectious diseases just won’t die. What is the latest ivermectin craze?

Weber: Yes, and to be clear, there is an ivermectin that is a pill that can be given to humans, which is what these folks are talking about. But there’s this group called the Front Line COVID-19 Critical Care Alliance that really pushed ivermectin in the height of covid. As we all know on this podcast, scientific study after scientific study after clinical trial has disproved that there is any efficacy for that. But this group has continued to push it. And I discovered, looking at their website back this winter, that they’re now pushing it for the flu and RSV. And as I asked the CDC [Centers for Disease Control and Prevention] and medical experts, there’s no clinical data to support pushing that for the flu or RSV. And, you know, as one scientist said to me, they had data that … had antiviral properties in a test tube. But as one scientist said to me, well, if you put Coca-Cola in a test tube, it would show it had antiviral properties as well. So there’s a lot of pushback to these folks. But, that said, they told me that they have had their protocols downloaded over a million times. You know, they’re … absolutely have some prominence and have, you know, converted a share of the American population to the belief that this is a useful medical treatment for them. And one of the doctors that has left their group over their support of ivermectin said to me, “Look, I’m not surprised that they’re continuing to push this for something else. This is what they do now. They push this for other things.” And so it’s quite interesting to see this continue to play out as we continue into covid, to see them kind of expand, as these folks said to me, into other diseases.

Rovner: I know I mean, usually when we see these kinds of things, it’s because the people who are pushing them are also selling them and making money off of them. And I know that’s the case in some of this, but a lot of these are just doctors who are writing prescriptions for ivermectin. Right? I mean, this is an actual belief that they have.

Weber: Yeah, some of them do make money off of telehealth appointments. They can charge up to a couple hundred dollars for telehealth appointments. And one of the couple of co-founders had a lucrative Substack and book deal that talks about ivermectin and do get paid by this alliance. One of them made almost a quarter of a million dollars in salary from the alliance. But yeah, I mean, the average doctor that’s prescribing ivermectin, I mean — there were over 400,000 ivermectin prescriptions in, I think, it was August of 2021. So that’s a lot of prescriptions.

Rovner: They’re not all making money off of it.

Weber: They’re not all making money. And I mean, what’s wild to me is Merck has come out and said, which, in a very rare statement for a pharmaceutical company, you know, don’t prescribe our drug for this. And when I asked them about RSV and the flu, they said, yeah, our statement would still stand on that. So it’s a movement, to some extent. And the folks I talked to about it, they really believe …

Rovner: And I will say, for a while in 2021, you couldn’t get horse wormer, which is a very nasty-tasting paste, even the horses don’t really like it. Because it was hard to get ivermectin at all. So we’ll see where this goes next. Here’s one of those “in case you missed It” stories. The Tulsa World this week has an interview with former Republican Sen. James Inhofe, who said, in his blunt Inhofe way, that he retired last year not only because he’s 88, but because he’s still suffering the effects of long covid. And he’s not the only one — quote, “five or six others have [long covid], but I’m the only one who admits it,” he told the paper, referring to other members of the Senate, presumably other Republican members of the Senate. Now, mind you, the very conservative Inhofe voted against just about every covid funding bill. And my impression from not going to the Hill regularly in 2021 and 2022 is that while covid seemed to be floating around in the air, lots of people were getting it, very few people seemed to be getting very sick. But now we’re thinking that’s not really the case, right?

Ollstein: When I saw this, I immediately went back to a story I wrote about a year ago on Tim Kaine’s long covid diagnosis and his attempts to convince his colleagues to put more research funding or treatment funding, more basic covid prevention funding … you know, fewer people will get long covid if fewer people get covid in the first place. And there was just zero appetite on the Republican side for that. And that’s why a lot of it didn’t end up passing. Inhofe was one of the Republicans I talked to, and I said, you know, do you think you should do more about long covid? What do you think about this? And this is what he told me: “I have other priorities. We’re handling all we can right now.” And then he added that long covid is not that well defined. And he argued there’s no way to determine how many people are affected. Well.

Rovner: OK.

Ollstein: So that … in “Quotes That Aged Poorly Hall of Fame.”

Rovner: You know, obviously Tim Kaine came forward and talked about it. But now I’m wondering if there are people who are slowing down or looking like they’re not well, maybe they have long covid and don’t want to say.

Ollstein: Well, I mean, something that Tim Kaine’s case shows is that there’s no one thing it can look like and somebody can look completely healthy and normal on the outside and be suffering symptoms. And Tim Kaine has also said that members of Congress have quietly disclosed to him and thanked him for speaking up, but said they weren’t willing to do it themselves. And he, Tim Kaine, told me that he felt more comfortable speaking up because the kind of symptoms he had were less stigmatized. They weren’t anything in terms of impeding his mental capacity and function. And there’s just a lot of stigma and fear of people coming forward and admitting they’re having a problem.

Rovner: I find it kind of ironic that last week we talked about how, you know, members of Congress and politicians with mental health, you know, normally stigmatizing problems are more willing to talk about it. And yet here are people with long covid not willing to talk about it. So maybe we’ll see a little bit more after this or maybe not. I want to talk a little bit about artificial intelligence and health care. I’ve been wanting to talk about this for a while, but this week seems to be everyone is talking about AI. There have been a spate of stories about how different types of artificial intelligence are aiding in medical care, but also some cautionary tales, particularly about chat engines. They get all their information from the internet, good or bad. Now, we already have robots that do intricate surgeries and lots and lots of treatment algorithms. On the other hand, the little bit of AI that I already have that’s medical-oriented, my Fitbit, that sometimes accurately tracks my exercise and sometimes doesn’t, and the chat bot from my favorite chain drugstore that honestly cannot keep my medication straight. None of that makes me terribly optimistic about launching into health AI. Is this, like most tech, going to roll out a little before it’s ready and then we’ll work the bugs out? Or maybe are we going to be a little bit more careful with some of this stuff?

Cohrs: I think we’ve already seen some examples of things rolling out before they’re exactly ready. And I just thought of my colleague Casey Ross’ reporting on Epic’s algorithm that was supposed to help …

Rovner: Epic, the electronic medical records company.

Cohrs: Yes, yes. They had this algorithm that was supposed to help doctors treat sepsis patients, and it didn’t work. The problem with using AI in health care is that there are life-and-death consequences for some of these things. If you’re misdiagnosing someone, if you’re giving them medicine they don’t need, there are, like, those big consequences. But there are also the smaller ones too. And my colleague Brittany Trang wrote about how with doctor’s notes or transcripts of conversations between a physician and a patient sometimes AI has difficulty differentiating between an “mm-hm” or an “uh-huh” and telling whether that’s a yes or a no. And so I think that there’s just all of these really fascinating issues that we’re going to have to work through. And I think there is enormous potential, certainly, and I think there’s getting more experimentation. But like you said, I think in health care it’s just a very different beast when you’re rolling things out and making sure that they work.

Weber: Yeah, I wanted to add, I mean, one of the things that I found really interesting is that doctors’ offices are using some of it to reduce some of the administrative burden. As we all know, prior authorizations suck up a lot of time for doctors’ offices. And it seems like this has actually been really helpful for them. That said, I mean, that comes with the caveat of — my colleagues and I and much reporting has shown that — sometimes these things just make up references for studies. They just make it up. That level of “Is this just a made-up study that supports what I’m saying?” I think is really jarring. This isn’t quite like using Google. It cannot be trusted to the level … and I think people do have caution with it and they will have to continue to have caution with it. But I think we’re really only at the forefront of figuring out how this all plays out.

Rovner: I was talking before we started taping about how I got a text from my favorite chain drugstore saying that I was out of refills and that they would call my doctor, which is fine. And then they said, “Text ‘Yes’ if you would like us to call” … some other doctor. I’m like, “Who the heck is this other doctor?” And then I realize he’s the doctor I saw at urgent care last September when I burned myself. I’m like, “Why on earth would you even have him in your system?” So, you know, that’s the sort of thing … it’s like, we’re going to be really helpful and do something really stupid. I worry that Congress, in trying to regulate tech, and failing so far — I mean, we’ve seen how much they do and don’t know about, you know, Facebook and Instagram and the hand-wringing over TikTok because it’s owned by the Chinese — I can’t imagine any kind of serious, thoughtful regulation on this. We’re going to have to basically rely on the medical industry to decide how to roll this out, right? Or might somebody step in?

Ollstein: I mean, there could be agency, you know, rulemaking, potentially. But, yes, it’s the classic conundrum of technology evolving way faster than government can act to regulate it. I mean, we see that on so many fronts. I mean, look how long has gone without any kind of update. And, you know, the kinds of ways health information is shared are completely different from when that law was written, so …

Rovner: Indeed.

Weber: And as Rachel said, I mean, this is life-or-death consequences in some places. So the slowness with which the government regulates things could really have a problem here, because this is not something that is just little …

Rovner: Of the things that keep me awake at night, this is one of the things that keeps me awake at night. All right. Well, one of these weeks, we will not have a ton of reproductive health news. But this week isn’t it. As of this taping, we still have not gotten a decision in that Texas case challenging the FDA approval of the abortion pill, mifepristone, back in the year 2000. But there’s plenty of other abortion news happening in the Lone Star State. First, a federal judge in Texas who was not handpicked by the anti-abortion groups ruled that Texas officials cannot enforce the state’s abortion ban against groups who help women get abortion out of state, including abortion funds that help women get the money to go out of state to get an abortion. The judge also questioned whether the state’s pre-Roe ban is even in effect or has actually been repealed, although there are overlapping bans in the state that … so that wouldn’t make abortion legal. But still, this is a win for the abortion rights side, right, Alice?

Ollstein: Yeah, I think the right knows that there are two main ways that people are still getting abortions who live in ban states. They’re traveling out of state or they are ordering pills in the mail. And so they are moving to try to cut off both of those avenues. And, you know, running into some difficulty in doing so, both in the courts and just practically in terms of enforcing. This is part of that bigger battle to try to cut off, you know, people’s remaining avenues to access the procedure.

Rovner: Well, speaking exactly of that, Texas being Texas, this week, we saw a bill introduced in the state legislature that would ban the websites that include information about how to get abortion pills and would punish internet providers that fail to block those sites. It would also overturn the court ruling we just talked about by allowing criminal prosecution of anyone who helps someone get an abortion. Even a year ago, I would have said this is an obvious legislative overreach, but this is Texas. So now maybe not so much.

Ollstein: I mean, I think lots of states are just throwing things at the wall to see what sticks and to see what gets through the courts. You had states test the waters on banning certain kinds of out-of-state travel, and that hasn’t gone anywhere yet. But even things that don’t end up passing and being implemented can have a chilling effect. You have a lot of confusion right now. You have a lot of people not sure what’s legal, what’s not. And if you create this atmosphere of fear where people might be afraid to go out of state, might be afraid to ask for funding to go out of state, afraid to Google around and see what their options are that serves the intended impacts of these proposals, in terms of preventing people from exploring their options and seeing what they can do to terminate a pregnancy.

Rovner: Yeah. Well, meanwhile, a dozen states that are not named Texas are suing the FDA, trying to get it to roll back some of the prescribing requirements around the abortion pill. The states are arguing that not only are the risk-mitigation rules unnecessary, given the proven safety of mifepristone, but that some of the certification requirements could invade the privacy of patients and prescribers and subject them to harassment or worse. They’re asking the judge to halt enforcement of the restrictions while the case is being litigated. That could run right into [U.S. District] Judge [Matthew] Kacsmaryk’s possible injunction in Texas banning mifepristone nationwide. Then what happens? If you’ve got one judge saying, “OK, you can’t sell this nationwide,” and another judge saying … “Of course you can sell it, and you can’t use these safety restrictions that the FDA has put around it.” Then the FDA has two conflicting decisions in front of it.

Weber: Yeah, and I find the battles of the AGs and the abortion wars are really fascinating because, I mean, this is a lawsuit brought by states, which is attorneys general, Democratic attorneys general. And you’re seeing that play out. I mean, you see that in Texas, too, with [Ken] Paxton. You see it in Michigan with [Dana] Nessel. I mean, I would argue one of the things that attorney generals have been the most prominent on in the last several decades of American history and have actually had immediate effects on due to the fall of Roe v. Wade. So we’ll see what happens. But it is fascinating to see in real time this proxy battle, so to speak, between the two sides play out across the states and across the country.

Rovner: No, it’s funny. State AGs did do the tobacco settlement.

Weber: Yes.

Rovner: I mean, that would not have happened. But what was interesting about that is that it was very bipartisan.

Weber: Well, they were on the same side.

Rovner: And this is not.

Weber: Yeah, I mean, yeah, they were on the same side. This is a different deal. And I think to some extent, and I did some reporting on this last year, it speaks to the politicization of that office and what that office has become and how it’s become, frankly, a huge launching pad for people’s political careers. And the rhetoric there often is really notched up to the highest levels on both sides. So, you know, as we continue to see that play out, I think a lot of these folks will end up being folks you see on the national stage for quite some time.

Ollstein: I’ve been really interested in the states where the attorney general has clashed with other parts of their own state government. And so in North Carolina, for example, right now you have the current Democratic attorney general who is planning to run for governor. And he said, I’m not going to defend our state restrictions on abortion pills in court because I agree with the people challenging them. And then you have the Republican state legislatures saying, well, if he’s not going to defend these laws, we will. So that kind of clash has happened in Kentucky and other states where the attorney general is not always on the same side with other state officials.

Rovner: If that’s not confusing enough, we have a story out of Mississippi this week, one of the few states where voters technically have the ability to put a question on the ballot, except that process has been blocked for the moment by a technicality. Now, Republican legislators are proposing to restart the ballot initiative process. They would fix the technicality, but not for abortion questions. Reading from the AP story here, quote, “If the proposed new initiative process is adopted, state legislators would be the only people in Mississippi with the power to change abortion laws.” Really? I mean, it’s hard to conceive that they could say you can have a ballot question, but not on this.

Ollstein: This is, again, part of a national trend. There are several Republican-controlled states that are moving right now to attempt to limit the ability of people to put a measure on the ballot. And this, you know, comes as a direct result of last year. Six states had abortion-related referendums on their ballot. And in all six, the pro-abortion rights side won. Each one was a little different. We don’t need to get into it, but that’s the important thing. And so people voted pretty overwhelmingly, even in really red states like Kentucky and Montana. And so other states that fear that could happen there are now moving to make that process harder in different ways. You have Mississippi trying to do, like, a carve-out where nothing on abortion can make it through. Other states are just trying to raise, like, the signature threshold or the vote threshold people need to get these passed. There are a lot of different ways they’re going about it.

Rovner: I covered the Mississippi “personhood” amendment back in 2011. It was the first statewide vote on, you know, granting personhood to fetuses. And everybody assumed it was going to win, and it didn’t, even in Mississippi. So I think there’s reason for the legislators who are trying to re-stand up this ballot initiative process to worry about what might come up and how the voters might vote on it. Well, because I continue to hear people say that women trying to have babies are not being affected by state abortion bans and restrictions, this week we have not one but two stories of pregnant women who were very much impacted by abortion bans. One from NPR is the story of a Texas woman pregnant with twins — except one twin had genetic defects not only incompatible with life, but that threatened the life of both the other twin and the pregnant woman. She not only had to leave the state for a procedure to preserve her own life and that of the surviving twin, but doctors in Texas couldn’t even tell her explicitly what was going on for fear of being brought up on charges of violating the state’s ban. I think, Alice, you were the one talking about how, you know, women are afraid to Google. Doctors are afraid to say anything.

Ollstein: Yeah, absolutely. I mean, it’s a really chilling and litigious environment right now. And I think, as more and more of these stories start to come forward, I think that is spurring the debates you’re seeing in a lot of states right now about adding or clarifying or expanding the kind of exceptions that exist on these bans. So you have very heated debates going on right now in Utah and Tennessee and in several states around, you know, should we add more exceptions because there are some Republican lawmakers who are looking at these really tragic stories that are trickling out and saying, “This isn’t what we intended when we voted for this ban. Let’s go back and revisit.” Whether exceptions even work when they are on the books is another question that we can discuss. I mean, we have seen them not be effective in other states and people not able to navigate them.

Rovner: We’ve seen a lot of these stories about women whose water broke early and at what point is it threatening her life? How close to death does she have to be before doctors can step in? I mean, we’ve seen four or five of these. It’s not like they’re one-offs. The other story this week is from the Daily Beast. It’s about a 28-year-old Tennessee woman whose fetus had anomalies with its heart, brain, and kidneys. That woman also had to leave the state at her own expense to protect her own health. Is there a point where anti-abortion forces might realize they are actually deterring women who want babies from getting pregnant for fear of complications that they won’t be able to get treated?

Ollstein: Most of the pushback I’ve seen from anti-abortion groups, they claim that the state laws are fine and that doctors are misinterpreting them. And there is a semantic tug of war going on right now where anti-abortion groups are trying to argue that intervening in a medical emergency shouldn’t even count as an abortion. Doctors argue, no, it is an abortion. It’s the same procedure medically, and thus we are afraid to do it under the current law. And the anti-abortion groups are saying, “Oh, no, you’re saying that in bad faith; that doesn’t count as an abortion. An abortion is when it’s intended to kill the fetus.” So you’re having this challenging tug of war, and it’s not really clear what states are going to do. There’s a lot of state bills on this making their way through legislatures right now.

Rovner: And doctors and patients are caught in the middle. Well, finally this week, Eli Lilly announced it would lower, in some cases dramatically, the list prices for some of its insulin products. You may remember that, last year, Democrats in Congress passed a $35-per-month cap for Medicare beneficiaries but couldn’t get those last few votes to apply the cap to the rest of the population. Lilly is getting very good press. Its stock price went up, even though it’s not really capping all the out-of-pocket costs for insulin for everybody. But I’m guessing they’re not doing this out of the goodness of their drugmaking heart, right, Rachel?

Cohrs: Probably not. Even though there’s a quote from their CEO that implied that that was the case. I think there was one drug pricing expert at West Health Policy Center, Sean Dickson, who is very sharp on these issues, knows the programs well. And he pointed out that there’s a new policy going into effect in Medicaid next year, and it’s really, really wonky and complicated. But I’ll do my best to try to explain that, generally, in the Medicare program, rebates are capped, or they have been historically, at the price of the drug. So you can’t charge a drugmaker a rebate that’s higher than the cost. But …

Rovner: That would make sense.

Cohrs: Right. But that math can get kind of wonky when there are really high drug price increases and then that math gets really messed up. But Congress, I want to say it was in 2021, tweaked this policy to discourage those big price increases. And they said, you know what? We’re going to raise the rebate cap in Medicaid, which means that, drugmakers, if you are taking really big price increases, you may have to pay us every time someone on Medicaid fills those prescriptions. And I think people thought about insulin right away as a drug that has these really high rebates already and could be a candidate disproportionately impacted by this policy. So I thought that was an interesting point that Sean made about the timing of this. That change is supposed to go into effect early next year. So this could, in theory, save Lilly a lot of money in the Medicaid program because we don’t know exactly what their net prices were before.

Rovner: But this is very convenient.

Cohrs: It’s convenient. And there’s a chance that they’re not really losing any money right now, depending on how their contracts work with insurers. So I think, yeah, there is definitely a possibility for some ulterior motives here.

Rovner: And plus, the thing that I learned this week that I hadn’t known before is that there are starting to be some generic competition. The three big insulin makers, which are Lilly, Sanofi, and Novo Nordisk, may actually not become the, almost, the only insulin maker. So it’s probably in Lilly’s interest to step forward now. And, you know, they’re reducing the prices on their most popular insulins, but not necessarily their most expensive insulin. So I think there’s still money to be made in this segment. But they sure did get, you know, I watched all the stories come across. It’s, like, it’s all, oh, look at this great thing that Lilly has done and that everything’s going to be cheap. And it’s, like, not quite. But …

Cohrs: But it is different. It’s a big step. And I think …

Rovner: It is. It is.

Cohrs: Somebody has to go first in breaking this cycle. And I think it will be interesting to see how that plays out for them and whether the other two companies do follow suit. Sen. Bernie Sanders asked them to and said, you know, why don’t you just all do the same thing and lower prices on more products? So, yeah, we’ll see how it plays out.

Weber: Day to day, I mean, that’s a huge difference for people. I mean, that is a lot of money. That is a big deal. So, I mean, you know, no matter what the motivation, at the end of the day, I think the American public will be much happier with having to pay a lot less for insulin.

Rovner: Yeah, I’m just saying that not everybody who takes insulin is going to pay a lot less for insulin.

Weber: Right. Which is very fair, very fair.

Rovner: But many more people than before, which is, I think, why it got lauded by everybody. Although I will … I wrote in my notes, please, someone mention Josh Hawley taking credit and calling for legislation. Sen. Hawley from Missouri, who voted against extending the $35 cap, as all Republicans did, to the rest of the population, put out a tweet yesterday that was, like, this is a great thing and now we should have, you know, legislation to follow up. And I’m like: OK.

Cohrs: You’ll have to check on that. I actually think Hawley may have voted for it.

Rovner: Oh, a-ha. All right.

Cohrs: There were a few Republicans.

Rovner: Thank you.

Cohrs: It’s not enough, though.

Rovner: Yeah, I remember that they couldn’t get those last few votes. Yes, I think [Sen. Joe] Manchin voted against. He was the one, the last Democrat they couldn’t get right. That’s why they ended up dropping …

Cohrs: Uh, it had to be a 60-vote threshold, so …

Rovner: Oh, that’s right.

Cohrs: Yeah.

Rovner: All right. Good. Thank you. Good point, Rachel. All right. Well, 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. Alice, why don’t you go first this week?

Ollstein: Yeah. So I did the incredible New York Times investigation by Hannah Dreier on child labor. This is about undocumented, unaccompanied migrant children who are coming to the U.S. And the reason I’m bringing it up on our podcast is there is a health angle. So HHS [the Department of Health and Human Services], their Office of Refugee Resettlement has jurisdiction over these kids’ welfare and making sure they are safe. And that is not happening right now. The system is so overwhelmed that they have been cutting corners in how they vet the sponsors that they release the kids to. Of course, we remember that there were tons of problems with these kids being detained and kept for way too long and that being a huge threat to their physical and mental health. But this is sort of the pendulum has swung too far in the opposite direction, and they’re being released to people who in some cases straight up trafficking them and in other cases just forcing them to work and drop out of school, even if it’s not a trafficking situation. And so this reporting has already had an impact. The HHS has announced all these new initiatives to try to stop this. So we’ll see if they are effective. But really moving, incredible reporting.

Rovner: Yeah, it was an incredible story. Lauren.

Weber: I’m going to shout out my former KHN colleague Brett Kelman. I loved his piece on, I guess you can’t call it a medical device because it wasn’t approved by the FDA, which is the point of the story. But this device that was supposed to fix your jaw so you didn’t have to have expensive jaw surgery. Well, what it ended up doing is it messed up all these people’s teeth and totally destroyed their mouths and left them with a bunch more medical and dental bills. And, you know, what I find interesting about the story, what I find interesting about the trend in general is the problem is, they never applied for anything with the FDA. So people were using this device, but they didn’t check, they didn’t know. And I think that speaks to the American public’s perception that devices and medical devices and things like this are safe to use. But a lot of times the FDA regulations are outdated or are not on top of this or the agency is so understaffed and not investigating that things like this slipped through the cracks. And then you have people — and it’s 10,000 patients, I believe, that have used this tool — that did not do what it is supposed to do and, in fact, injured them along the way. And I think that the FDA piece of that is really interesting. It’s something I’ve run into before looking at air cleaners and how they fit the gaps of that. And I think it’s something we’re going to continue to see as we examine how these agencies are really stacking up to the evolution of technology today.

Rovner: Yeah, capitalism is going to push everything. Rachel.

Cohrs: So my extra credit this week is actually an opinion piece, in Stat, and the headline is “Nonprofit Hospitals Are Failing Americans. Their Boards May Be a Reason Why.” It was written by Sanjay Kishore and Suhas Gondi. I think the part that really stood out to me is they analyzed the backgrounds and makeups of hospital boards, especially nonprofit hospitals. I think they analyzed like 20 large facilities. And the statistic that really surprised me was that, I think, 44% of those board members came from the financial sector representing investment funds, real estate, and other entities. Less than 15% were health care workers, 13% were physicians, and less than 1% were nurses. And, you know, I’ve spent a lot of time and we’ve spent a lot of time thinking about just how nonprofit hospitals are operating as businesses. And I think a lot of other publications have done great work as well making that point. But I think this is just a stark statistic that shows these boards that are supposed to be holding these organizations accountable are thinking about the bottom line, because that’s what the financial services sector is all about, and that there’s so much disproportionately less clinical representation. So obviously hospitals need admin sides to run, and they are businesses, and a lot of them don’t have very large margins. But the statistics just really surprised me as to the balance there.

Rovner: Yeah, I felt like this is one, you know, we’ve all been sort of enmeshed in this, you know, what are we going to do about the nonprofit hospitals that are not actually acting as charitable institutions? But I think the boards had been something that I had not seen anybody else look at until now. So it’s a really interesting piece. All right. Well, my story this week is the other big investigation from The New York Times. It’s called “A Drug Company Exploited a Safety Requirement to Make Money,” by Rebecca Robbins. And it’s about those same risk-mitigation rules from the FDA that are at the heart of those abortion drug lawsuits we talked about a few minutes ago. Except in this case, the drug company in question, Jazz Pharmaceuticals, somehow patented its risk-mitigation strategy as the distribution center — it’s actually called the REMS [Risk Evaluation and Mitigation Strategies] — which is managed to fend off generic competition for the company’s narcolepsy drug. It had also had a response already. It has produced a bipartisan bill in the Senate to close the loophole — but [I’ll] never underestimate the creativity of drugmakers when it comes to protecting their profit. It’s quite a story. 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. Also, 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’m @jrovner. Alice?

Ollstein: @AliceOllstein

Rovner: Rachel.

Cohrs: @rachelcohrs

Rovner: Lauren.

Weber: @LaurenWeberHP

Rovner: We will be back in your feed next week. In the meantime, be healthy.

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Valley County, with a population of just over 7,500, passed levies to support the nursing home amounting to an estimated $300,000 a year for three years, starting this year. And when the Hi-Line Retirement Center in neighboring Phillips County shut down last year as the covid-19 pandemic brought more stressors to the nursing home industry, Valley View Home took in some of its patients.

Thompson said he foresees more nursing home closures on the horizon as their financial struggles continue. But lawmakers are trying to reduce that risk through measures that would raise and set standards for the Medicaid reimbursement rates that nursing homes depend on for their operations.

A study commissioned by the last legislative session found that Medicaid providers in Montana were being reimbursed at rates much lower than the cost of care. In his two-year state budget proposal before lawmakers, Republican Gov. Greg Gianforte has proposed increases to the provider rates that fall short of the study’s recommendations.

Legislators drafting the state health department budget included rates higher than the governor’s proposal, but still not enough for nursing homes to cover the cost of providing care. Those rates are subject to change as the state budget bill goes through the months-long legislative process, though majority-Republican lawmakers so far have rejected Democratic lawmakers’ attempts for full funding.

In a separate effort to address the long-term care industry’s long-term viability, a bipartisan bill going through Montana’s legislature, Senate Bill 296, aims to revise how nursing homes and assisted living facilities are funded. The bill would direct health officials to consider inflation, cost-of-living adjustments, and the actual costs of services in setting Medicaid reimbursement rates.

SB 296, which received an initial hearing on Feb. 17, has generated conflicting opinions from experts in the long-term care field on whether it does enough to avoid nursing home closures.

Republican Sen. Becky Beard, the bill’s sponsor, said that although the bill comes too late for the nursing homes that have already closed, she sees it as shining a light on a problem that’s not going away.

“We need to stop the attrition,” Beard said.

Sebastian Martinez Hickey, a research assistant at the Economic Policy Institute, a nonprofit think tank, said wages for nursing home employees had been extremely low even before the pandemic. He said the focus needs to be on raising Medicaid reimbursement rates beyond inflationary factors.

“Increasing Medicaid rates for inflation is going to have positive effects, but there’s no way that it’s going to compensate for what we’ve experienced in the last several years,” Martinez Hickey said.

Colorado, Illinois, Massachusetts, and North Carolina are among the states that have adopted laws or regulations to increase nursing home staff wages since the pandemic began. Michigan, North Carolina, and Ohio adopted increases or one-time bonuses.

In Maine, a 2020 study of long-term care workforce issues suggested that Medicaid rates should be high enough to support direct-care worker wages that amount to at least 125% of the minimum wage, which is $13.80 in that state. In combination with other goals outlined in the study, after a year there had been modest increases in residential care homes and beds, improved occupancy rates, and nods toward stabilization of the direct-care workforce.

Rose Hughes, executive director of the Montana Health Care Association, which lobbies on behalf of nursing homes and senior issues, said many of the problems plaguing senior care come down to reimbursement rates. There’s not enough money to hire staff, and, if there were, wages would still be too low to attract staff in a competitive marketplace, Hughes said.

“It’s trying to deal with systemic problems that exist in the system so that longer term the reimbursement system can be more stable,” Hughes said.

The governor’s office said Gianforte has been clear that Montana needs to raise its provider rates. For senior and long-term care, Gianforte’s proposed state budget would raise provider rates to 88% of the benchmark recommended by the state-commissioned study. Gianforte’s budget proposal is a starting point for lawmakers, and legislative budget writers have penciled in funding at about 90% of the benchmark rate.

“The governor continues to work with legislators and welcomes their input on his historic provider rate investment,” Gianforte spokesperson Kaitlin Price said.

Democratic Rep. Mary Caferro is sponsoring a bill to fully fund the Medicaid provider rates in accordance with the study.

“What we really, really need is our bill to pass so that it brings providers current with ongoing funding for predictability and stability so they can do the good work of caring for people,” Caferro said at a Feb. 21 press briefing.

But Thompson said that even the reimbursement rate recommended by the study — $279 per patient, per day, compared with the current $208 rate — isn’t high enough to cover Valley View Home’s expenses. He said he’s going to have to have a “heart to heart” with the facility’s board to see what can be done to keep it open if the local tax levies in combination with the new rate aren’t enough to cover the cost of operations.

David Trost, CEO of St. John’s United, an assisted-living facility for seniors in Billings, said the current reimbursement rate is so low that St. John’s uses savings, grants, fundraising revenue, and other investments to make up the difference. He said that while SB 296 looks at factors to cover operating costs, it doesn’t account for other costs, such as repairs and renovations.

“In addition to paying for existing operating costs as desired by SB 296, we also need to look at funding of capital improvements through some loan mechanism to help nursing facilities make improvements to existing environments,” Trost said.

Another component of SB 296 seeks to boost assisted-living services by generating more federal funding.

Additional money could help reduce or eliminate the waiting list for assisted-living homes, which now stands at about 175 people, Hughes said. That waiting list not only signals that some seniors aren’t getting service, but it also results in more people being sent to nursing homes when they may not need that level of care.

SB 296 would also ensure that money appropriated to nursing homes can be used only for nursing homes, and not be available for other programs within the Department of Public Health and Human Services, like dentists, hospitals, or Medicaid expansion. According to Hughes, in 2021 the nursing home budget had a remainder of $29 million, which was transferred to different programs in the Senior and Long Term Care division.

If the funding safeguard in SB 296 had been in place at that time, Hughes said, there may have been more money to sustain the nursing homes that closed last year.

Keely Larson is the KHN fellow for the UM Legislative News Service, a partnership of the University of Montana School of Journalism, the Montana Newspaper Association, and Kaiser Health News. Larson is a graduate student in environmental and natural resources journalism at the University of Montana.

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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Word spread to Facebook groups, and patients started calling Coram CVS, a major U.S. supplier of the compounded IV nutrients on which they rely for survival. To their dismay, CVS Health confirmed the rumors on June 1: It was closing 36 of the 71 branches of its Coram home infusion business and laying off about 2,000 nurses, dietitians, pharmacists, and other employees.

Many of the patients left in the lurch have life-threatening digestive disorders that render them unable to eat or drink. They depend on parenteral nutrition, or PN — in which amino acids, sugars, fats, vitamins, and electrolytes are pumped, in most cases, through a specialized catheter directly into a large vein near the heart.

The day after CVS’ move, another big supplier, Optum Rx, announced its own consolidation. Suddenly, thousands would be without their highly complex, shortage-plagued, essential drugs and nutrients.

“With this kind of disruption, patients can’t get through on the phones. They panic,” said Cynthia Reddick, a senior nutritionist who was let go in the CVS restructuring.

“It was very difficult. Many emails, many phone calls, acting as a liaison between my doctor and the company,” said Elizabeth Fisher Smith, a 32-year-old public health instructor in New York City, whose Coram branch closed. A rare medical disorder has forced her to rely on PN for survival since 2017. “In the end, I got my supplies, but it added to my mental burden. And I’m someone who has worked in health care nearly my entire adult life.”

CVS had abandoned most of its less lucrative market in home parenteral nutrition, or HPN, and “acute care” drugs like IV antibiotics. Instead, it would focus on high-dollar, specialty intravenous medications like Remicade, which is used for arthritis and other autoimmune conditions.

Home and outpatient infusions are a growing business in the United States, as new drugs for chronic illness enable patients, health care providers, and insurers to bypass in-person treatment. Even the wellness industry is cashing in, with spa storefronts and home hydration services.

But while reimbursement for expensive new drugs has drawn the interest of big corporations and private equity, the industry is strained by a lack of nurses and pharmacists. And the less profitable parts of the business — as well as the vulnerable patients they serve — are at serious risk.

This includes the 30,000-plus Americans who rely for survival on parenteral nutrition, which has 72 ingredients. Among those patients are premature infants and post-surgery patients with digestive problems, and people with short or damaged bowels, often the result of genetic defects.

While some specialty infusion drugs are billed through pharmacy benefit managers that typically pay suppliers in a few weeks, medical plans that cover HPN, IV antibiotics, and some other infusion drugs can take 90 days to pay, said Dan Manchise, president of Mann Medical Consultants, a home care consulting company.

In the 2010s, CVS bought Coram, and Optum bought up smaller home infusion companies, both with the hope that consolidation and scale would offer more negotiating power with insurers and manufacturers, leading to a more stable market. But the level of patient care required was too high for them to make money, industry officials said.

“With the margins seen in the industry,” Manchise said, “if you’ve taken on expensive patients and you don’t get paid, you’re dead.”

In September, CVS announced its purchase of Signify Health, a high-tech company that sends out home health workers to evaluate billing rates for “high-priority” Medicare Advantage patients, according to an analyst’s report. In other words, as CVS shed one group of patients whose care yields low margins, it was spending $8 billion to seek more profitable ones.

CVS “pivots when necessary,” spokesperson Mike DeAngelis told KHN. “We decided to focus more resources on patients who receive infusion services for specialty medications” that “continue to see sustained growth.” Optum declined to discuss its move, but a spokesperson said the company was “steadfastly committed to serving the needs” of more than 2,000 HPN patients.

DeAngelis said CVS worked with its HPN patients to “seamlessly transition their care” to new companies.

However, several Coram patients interviewed about the transition indicated it was hardly smooth. Other HPN businesses were strained by the new demand for services, and frightening disruptions occurred.

Smith had to convince her new supplier that she still needed two IV pumps — one for HPN, the other for hydration. Without two, she’d rely partly on “gravity” infusion, in which the IV bag hangs from a pole that must move with the patient, making it impossible for her to keep her job.

“They just blatantly told her they weren’t giving her a pump because it was more expensive, she didn’t need it, and that’s why Coram went out of business,” Smith said.

Many patients who were hospitalized at the time of the switch — several inpatient stays a year are not unusual for HPN patients — had to remain in the hospital until they could find new suppliers. Such hospitalizations typically cost at least $3,000 a day.

“The biggest problem was getting people out of the hospital until other companies had ramped up,” said Dr. David Seres, a professor of medicine at the Institute of Human Nutrition at Columbia University Medical Center. Even over a few days, he said, “there was a lot of emotional hardship and fear over losing long-term relationships.”

To address HPN patients’ nutritional needs, a team of physicians, nurses, and dietitians must work with their supplier, Seres said. The companies conduct weekly bloodwork and adjust the contents of the HPN bags, all under sterile conditions because these patients are at risk of blood infections, which can be grave.

As for Coram, “it’s pretty obvious they had to trim down business that was not making money,” Reddick said, adding that it was noteworthy both Coram and Optum Rx “pivoted the same way to focus on higher-dollar, higher-reimbursement, high-margin populations.”

“I get it, from the business perspective,” Smith said. “At the same time, they left a lot of patients in a not great situation.”

***

Smith shares a postage-stamp Queens apartment with her husband, Matt; his enormous flight simulator (he’s an amateur pilot); cabinets and fridges full of medical supplies; and two large, friendly dogs, Caspian and Gretl. On a recent morning, she went about her routine: detaching the bag of milky IV fluid that had pumped all night through a central line implanted in her chest, flushing the line with saline, injecting medications into another saline bag, and then hooking it through a paperback-sized pump into her central line.

Smith has a connective tissue disorder called Ehlers-Danlos syndrome, which can cause many health problems. As a child, Smith had frequent issues such as a torn Achilles tendon and shoulder dislocations. In her 20s, while working as an EMT, she developed severe gut blockages and became progressively less able to digest food. In 2017, she went on HPN and takes nothing by mouth except for an occasional sip of liquid or bite of soft food, in hopes of preventing the total atrophy of her intestines. HPN enabled her to commute to George Washington University in Washington, D.C., where in 2020 she completed a master’s in public health.

On days when she teaches at LaGuardia Community College — she had 35 students this semester — Smith is up at 6 a.m. to tend to her medical care, leaves the house at 9:15 for class, comes home in the afternoon for a bag of IV hydration, then returns for a late afternoon or evening class. In the evening she gets more hydration, then hooks up the HPN bag for the night. On rare occasions she skips the HPN, “but then I regret it,” she said. The next day she’ll have headaches and feel dizzy, sometimes losing her train of thought in class.

Smith describes a “love-hate relationship” with HPN. She hates being dependent on it, the sour smell of the stuff when it spills, and the mountains of unrecyclable garbage from the 120 pounds of supplies couriered to her apartment weekly. She worries about blood clots and infections. She finds the smell of food disconcerting; Matt tries not to cook when she’s home. Other HPN patients speak of sudden cravings for pasta or Frosted Mini-Wheats.

Yet HPN “has given me my life back,” Smith said.

She is a zealous self-caretaker, but some dangers are beyond her control. IV feeding over time is associated with liver damage. The assemblage of HPN bags by compounding pharmacists is risky. If the ingredients aren’t mixed in the right order, they can crystallize and kill a patient, said Seres, Smith’s doctor.

He and other doctors would like to transition patients to food, but this isn’t always possible. Some eventually seek drastic treatments such as bowel lengthening or even transplants of the entire digestive tract.

“When they run out of options, they could die,” said Dr. Ryan Hurt, a Mayo Clinic physician and president of the American Society for Parenteral and Enteral Nutrition.

***

And then there are the shortages.

In 2017, Hurricane Maria crippled dozens of labs and factories making IV components in Puerto Rico; next came the covid-19 emergency, which shifted vital supplies to gravely ill hospital patients.

Prices for vital HPN ingredients can fluctuate unpredictably as companies making them come and go. For example, in recent years the cost of the sodium acetate used as an electrolyte in a bag of HPN ballooned from $2 to $25, then briefly to $300, said Michael Rigas, a co-founder of the home infusion pharmacy KabaFusion.

“There may be 50 different companies involved in producing everything in an HPN bag,” Rigas said. “They’re all doing their own thing — expanding, contracting, looking for ways to make money.” This leaves patients struggling to deal with various shortages from saline and IV bags to special tubing and vitamins.

“In the last five years I’ve seen more things out of stock or on shortage than the previous 35 years combined,” said Rigas.

The sudden retrenchment of CVS and Optum Rx made things worse. Another, infuriating source of worry: the steady rise of IV spas and concierge services, staffed by moonlighting or burned-out hospital nurses, offering IV vitamins and hydration to well-off people who enjoy the rush of infusions to relieve symptoms of a cold, morning sickness, a hangover, or just a case of the blahs.

In January, infusion professionals urged FDA Commissioner Robert Califf to examine spa and concierge services’ use of IV products as an “emerging contributing factor” to shortages.

The FDA, however, has little authority over IV spas. The Federal Trade Commission has cracked down on some spa operations — for unsubstantiated health claims rather than resource misuse.

Bracha Banayan’s concierge service, called IVDRIPS, started in 2017 in New York City and now employs 90 people, including 60 registered nurses, in four states, she said. They visit about 5,000 patrons each year, providing IV hydration and vitamins in sessions of an hour or two for up to $600 a visit. The goal is “to hydrate and be healthy” with a “boost that makes us feel better,” Banayan said.

Although experts don’t recommend IV hydration outside of medical settings, the market has exploded, Banayan said: “Every med spa is like, ‘We want to bring in IV services.’ Every single paramedic I know is opening an IV center.”

Matt Smith, Elizabeth’s husband, isn’t surprised. Educated as a lawyer, he is a paramedic who trains others at Columbia University Irving Medical Center. “You give someone a choice of go up to some rich person’s apartment and start an IV on them, or carry a 500-pound person living in squalor down from their apartment,” he said. “There’s one that’s going to be very hard on your body and one very easy on your body.”

The very existence of IV spa companies can feel like an insult.

“These people are using resources that are literally a matter of life or death to us,” Elizabeth Smith said.

Shortages in HPN supplies have caused serious health problems including organ failure, severe blisters, rashes, and brain damage.

For five months last year, Rylee Cornwell, 18 and living in Spokane, Washington, could rarely procure lipids for her HPN treatment. She grew dizzy or fainted when she tried to stand, so she mostly slept. Eventually she moved to Phoenix, where the Mayo Clinic has many Ehlers-Danlos patients and supplies are easier to access.

Mike Sherels was a University of Minnesota Gophers football coach when an allergic reaction caused him to lose most of his intestines. At times he’s had to rely on an ethanol solution that damages the ports on his central line, a potentially deadly problem “since you can only have so many central access sites put into your body during your life,” he said.

When Faith Johnson, a 22-year-old Las Vegas student, was unable to get IV multivitamins, she tried crushing vitamin pills and swallowing the powder, but couldn’t keep the substance down and became malnourished. She has been hospitalized five times this past year.

Dread stalks Matt Smith, who daily fears that Elizabeth will call to say she has a headache, which could mean a minor allergic or viral issue — or a bloodstream infection that will land her in the hospital.

Even more worrying, he said: “What happens if all these companies stop doing it? What is the alternative? I don’t know what the economics of HPN are. All I know is the stuff either comes or it doesn’t.”

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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