When Garner entered the gates at Louisiana State Penitentiary in Angola, Louisiana, he didn’t know what to expect. The maximum security facility has been dubbed “America’s Bloodiest Prison” and its brutal conditions have made headlines for decades.

“Sometimes when you’re in a dark place, you find out who you really are and what you wish you could be,” Garner said. “Even in darkness, I could be a light.”

It wasn’t until five years later that Garner would get his chance to show everyone he wasn’t the hardened criminal they thought he was. When the prison warden, Burl Cain, decided to start the nation’s first prison hospice program, Garner volunteered.

In helping dying inmates, Garner believed he could claw back some meaning to the life he had nearly squandered in the heat of the moment. For the next 25 years, he cared for his fellow inmates, prisoners in need of help and compassion at the end of their lives.

The Angola program started by Cain, with the help of Garner and others, has since become a model. Today at least 75 of the more than 1,200 state and federal penal institutions nationwide have implemented formal hospice programs. Yet as America’s prison population ages, more inmates are dying behind bars of natural causes and few prisons have been able to replicate Angola’s approach.

Garner hopes to change that. But first he had to redeem himself.

‘Life Means Life’

Garner, the son of a longshoreman, was born and raised in New Orleans as one of seven kids who kept their mother busy at home. He attended Catholic primary school and played football at Booker T. Washington High School. After graduating, Garner worked for a garbage collection company, then for an ice cream manufacturer, testing deliveries of milk to make sure they hadn’t been watered down.

None of that experience would help him at Angola, where violence seemed to be everywhere. Garner remembered the endless stream of ambulances rolling through the prison gates.

“All day long: Somebody has gotten stabbed, somebody had gotten into a bad fight, blood everywhere,” he said.

Cain arrived at Angola in 1995, three years into Garner’s life sentence. In 1997, the warden came across a newspaper article about a hospice program in Baton Rouge, the state capital.

“I realized that if we did hospice, I wouldn’t have to do that rush at the end of life. We wouldn’t have to put them in an ambulance and send them to the hospital,” Cain said. “We could let them die in peace and not have to do all that.”

At first, the prison’s medical staff objected, worried about the cost. But Cain put his foot down. He hired a hospice nurse to run the program, and inmates would provide the day-to-day care at no cost.

Cain sought volunteers and funding from what he called the prison’s “clubs and organizations” — the Aryan Brotherhood, the Black Panthers, as well as the religious congregations within the prison walls. “All of y’all one day are going to be in hospice,” he said he told them.

It was no exaggeration. In Louisiana, as the saying goes, life means life, with no chance of parole. And at that time, 85% of those sent to Angola would die there, according to Cain and others.

“We buried more people a year than we released out the front gate,” Cain said.

Many serving life sentences no longer had family outside the prison walls, and for those who did, their families often could not afford to pay for a funeral or burial spot. So, the prison would bury the bodies at Angola. When the first cemetery was filled, the prison established another.

Initially, inmates were buried in cardboard boxes. But during one funeral, the body fell out of the box onto the ground. Cain vowed that would never happen again and instructed inmates working in carpentry to learn to make wooden caskets. The prison then provided caskets for any inmate in Louisiana whose body was not claimed by their family. The late Rev. Billy Graham and his wife were buried in two made at Angola.

Cain saw the hospice program as part of his approach of rehabilitation through morality and Christian principles. Cain started a seminary program at Angola, had the prisoners build several churches on its grounds, and considered hospice “the icing on the cake.”

The Early Days

Garner had never heard of hospice.

He was among the first 40 volunteers at the prison, hand-picked for their clean disciplinary records and trained by two social workers from a New Orleans hospital in 1998.

Isolation cells were remade to serve as hospice rooms. The volunteers repainted the walls and draped curtains to hide the wire mesh covering the windows. They brought in nightstands and tables, TVs, and air conditioning.

Soon, it became clear the prison would have to change its rules to accommodate hospice. Before the program existed, inmates weren’t allowed to touch each other. They couldn’t even assist someone out of a wheelchair.

“They would actually push them into a room and wait on the nurse or doctor or somebody else to assist them,” Garner said. “They would die alone. They had nobody to talk to them, other than nurses and doctors making their rounds. They really didn’t have nobody that they could relate to.”

The volunteers were issued hospice T-shirts that allowed them free movement through the prison. Cain made it clear to the correctional officers and the staff that if someone was wearing that shirt, it was like hearing directly from the warden.

“He had to rewrite policies so everything that a hospice program can do in society, that program can do as well inside corrections,” Garner said.

The primary rule of the hospice program was that no one would die alone. When death was imminent, the hospice volunteers conducted a vigil round-the-clock.

The program used medications, including opioids, for the palliative care of patients, though the inmate volunteers were not allowed to administer them.

The first hospice patient Garner saw die was a man the prisoners called Baby. Standing just 4-foot-5, he was sought out by other inmates for his self-taught legal expertise. In 1998, as Baby was dying from cirrhosis, a disease of the liver, inmates rushed in to get his advice one last time.

“So many people wanted to see him, we just didn’t have enough room to take everybody in,” Garner said. “We used to have to do increments of 10 guys or whatever.”

Baby had taken care of everybody else. Now it was their time to take care of him.

Most of the hospice volunteers were serving life sentences, and many, like Garner, had taken someone’s life to get there. But holding a man’s hand as he took his last breath provided a new perspective.

“We all don’t know much about death, only what we see through the eyes of somebody who was going through that transition,” Garner said. “It was new to me, because I didn’t understand it in its entirety until I got into the program.”

The hospice volunteers became the conduit for inmates to get messages to their dying friends.

But more importantly, they functioned as confidants, giving dying inmates a last chance to get something off their chest.

“You become their hands, you become their eyes, you become their feet, you become their thinking sometimes,” Garner said. “They’re so vulnerable to where you actually have to be so mindful and careful to carry out their will.”

In a place where people prey on weakness, hospice volunteers shared in each patient’s vulnerability. Instead of assaulting, they assisted. Instead of sowing conflict, they spread peace.

“Just a touch makes a big difference, when a person can’t see or a person can’t hear,” Garner said.

‘What About Quilting?’

As the years passed, hospice deaths became more prevalent, with two to three inmates dying a week. The prison population was graying, and not just at Angola. According to , from 1991 to 2021, the percentage of state and federal inmates 55 and older grew from 3% to 15%. And in 2020, 30% of those serving life sentences were at least 55 years old.

Throughout the 2000s, the Angola hospice saw increasing deaths from cancer, hepatitis C, and AIDS. But mostly, the patients’ bodies were wearing out. Most had come from low-income backgrounds and arrived at Angola in less-than-optimal health. Prison took a further toll, accelerating aging and exacerbating chronic conditions.

The hospice volunteers tried to grant the dying inmates’ often modest last requests: fresh fruit, a peanut butter and jelly sandwich, some potato chips.

“A bag of chips, to people in society, it’s like, ‘Oh man, that ain’t it,’” Garner said. “But to somebody that has a taste for it or for somebody that’s about to pass away, their wanting is everything.”

But those wishes cost money. In 2000, the prison volunteers were brainstorming ways to make the program self-sufficient.

“What about quilting?” suggested Tanya Tillman, the hospice nurse.

The room fell silent, Garner recalled. The volunteers looked around nervously.

“That was not something that a male inmate wanted to hear,” Garner said.

But the other “clubs and organizations,” as Cain called the inmate groups, were also raising money through fundraisers. They needed something that would stand out, something they would have no competition over.

“And so we voted,” Garner said. “Quilting it was.”

None of the men had quilted before. Some women came to teach them the basics, but mostly they learned through trial and error.

“I just put a sewing machine in front of me,” Garner said. “I knew all the do’s and don’ts, but I didn’t know how to take and cut fabric, and put fabric together, and make it make sense.”

They auctioned off their first quilt at the , a biannual event in which prisoners compete in traditional rodeo events. It attracts people from all over the world.

At one point, Garner and his team were making 125 or more quilts a year: throws, kings, and queens.

“Within five years, we was on the front cover of Minnesota Alumni magazine,” Garner said, referencing the University of Minnesota Alumni Association’s publication. “In 2007, we were on another front cover, Imagine Louisiana magazine, and then in 10 years, we was in documentaries with Oprah Winfrey,” Garner said.

The Oprah Winfrey Network profiled the prison hospice program in 2011 in a documentary titled “Serving Life.”

Quilts made in Angola now hang in , the Smithsonian Institution’s in Washington, D.C., and the building in Alexandria, Virginia.

One of the first quilts Garner made was a passage quilt, used instead of a plain white sheet to cover bodies being transported to the morgue. The quilt showed the clouds opening and angels receiving the inmate into heaven. It was adorned with the words, “I’m free, no more chains holding me.” Garner made another quilt to drape over the casket during funeral processions.

The program used the proceeds from the sale of other quilts to stock a cabinet with food and other sundries the hospice patients might need. If a patient’s family did not have the money to travel to Louisiana to see their loved one in his final days, the program would pay for their airline tickets. The family could stay overnight in the patient’s room, something that was unheard of in a maximum security prison.

The hospice program broke a lot of prison norms, and seemingly anything was on the table. When one hospice patient’s dying wish was to go fishing, the volunteers got the warden’s approval and brought a group of inmates with him.

The Mississippi River surrounds the Angola area on three sides, and the staff baited a fishing hole for days before the excursion so fish would be biting when the dying man arrived.

The fishing excursion became an annual event.

“You see the smile on their faces catching those fish,” Cain said. “They forgot all about that they were terminal.”

He added, “It teaches us to normalize our prisons and quit making them abnormal, bad places, and make it make people think they’re bad people. Hospice is the best example of all, to teach you to give back and then you will heal, and you won’t have more victims when you get out of prison.”

A Change in Prison Culture

Soon the impact of hospice was being felt well beyond the volunteers and their patients.

“It’s of their facilities. It changed the general population,” said Jamey Boudreaux, the executive director of the . “The general population sees people caring and it’s kind of contagious.”

When Boudreaux was hired in 1998, his first task from the board of directors was to shut down the hospice at Angola.

“They’re calling something hospice,” he recalled the board telling him, “and we can just see that there’s going to be some sort of big scandal and hospice is going to get a bad name.”

He called the prison and Cain invited him to come see the hospice program in person. Boudreaux, who had never been in a prison before, sat through a two-hour meeting with hospice volunteers and correctional officers.

He didn’t shut it down. Instead, he continued to attend monthly meetings at the prison for the next five years. Eventually, the administrators asked him if he’d feel comfortable being there alone with the volunteers, so they could speak more freely.

“I got to know these guys and they were genuinely committed to this whole notion of taking care of people at the end of life,” he said. “For some of them, it was a way to find redemption. For others, it was an affirmation that, ‘I don’t deserve to be in this place. And this gives me a very safe place to spend my time in prison.’”

The concept of prison hospice began to spread. In 2006, and again in 2012, Angola hosted a prison hospice conference. Now, five of the eight state prison facilities in Louisiana have inmate volunteer hospice programs. Nationwide, about 75 to 80 hospice programs operate behind bars.

“Most are pretty basic,” said Cordt Kassner, a consultant with in Colorado Springs, Colorado. “Angola is head and shoulders the model; the best one, period.”

Regaining Freedom

Between caring for patients, sewing quilts, and working in the prison library, Garner had little time for anything else, though he continued to push for his case to be reviewed to earn his freedom.

Then, during the covid-19 pandemic, the quilters were asked to sew masks for the prison. The prison set up shifts so prisoners could maximize use of the sewing machines, keeping them running 24 hours a day. Masks were shipped to other prisons as well. Garner estimated he made 25,000 masks.

“I actually had to take time away from my work, from trying to get out of that place, working legal work and stuff,” Garner said.

Finally, in 2021, his case was reviewed by the Orleans Parish District Attorney’s Civil Rights Division. A judge agreed with the district attorney that in receiving life sentences at Angola, Garner and his brother had been oversentenced. They offered the brothers a deal: They could plead guilty to the lesser charge of manslaughter and be released for time served.

Garner had to think about it. His lawyers told him he likely had a good case to sue and be compensated for the many years he had spent in prison. But if he took the deal, he couldn’t sue.

“I could fight it or gain my freedom,” he said.

His family wanted the brothers home. Garner had lost his mother, his father, two brothers, and an aunt while behind bars. He and his brother opted to forgo any money that might come their way and secured their release.

“Steven Garner came in as a horrible criminal,” Cain said. “But he left us a wonderful man.”

Most of Garner’s immediate family had moved to the Colorado Springs area after being displaced by Hurricane Katrina, and in January 2022, after serving 31 years in prison, he joined them.

Spreading the Message

Quilting is an art of putting scraps of fabric together, making everything fit coherently. Now out of prison, Garner had to find a way to make all the pieces of his life fit together as well. He found a job at a warehouse, rented a home near his family, and bought himself a car.

At his prison job, he made 20 cents an hour — $8 a week, $32 a month — that he used to buy soap and deodorant. It’s a strange feeling today, he said, to be able to go into a store and buy something that costs more than $32.

Now 51, he has missed the prime years of his adult life. But rather than trying to make up for lost time in some grand hedonistic rush, Garner went back to what had saved him. He started a consulting business to help prisons implement hospice programs.

Over the past two years, he has delivered speeches at state hospice association conferences, and last year he spoke at a meeting of the Colorado Bar Association.

For many hospice veterans, prison hospice reminds them of the initial days of hospice, when it was primarily a nonprofit entity, run by people called to serve others.

“You would be hard-pressed to find a hospice provider that’s willing to support hospice in correctional facilities,” said Kim Huffington, chief nursing officer at Sangre de Cristo Community Care, a hospice based in Pueblo, Colorado. “Hospice as an industry has undergone a lot of change in the last 10 years and there’s a lot more for-profit hospices than there used to be.”

Yet talking to Garner, she said, has reignited her passion for the field.

“In many situations, we tend to dehumanize what we don’t understand or have experience with,” Huffington said. “The way he can make you see what he’s experienced through his eyes is something that I take away from every conversation with him.”

In September, Garner went back to prison, this time at the behest of the Colorado Department of Corrections, which wanted his advice on how to restart a defunct hospice program at Colorado Territorial Correctional Facility in Cañon City.

It was a surreal experience entering a prison again, dropping his keys in a little basket at the security screening, knowing he’d get them back shortly.

“It was really just another experience in my life,” Garner reflected, “that I can come and go, rather than come and stay.”

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Quinto, 30, had been pinned on the ground for at least 90 seconds by police in California and stopped breathing. He died three days later.

Now his relatives are asking a federal judge to exclude any testimony about “excited delirium” in their wrongful death case against the city of Antioch. Their case may be stronger than ever.

Their push comes at the end of a pivotal year for the long-standing, nationwide effort to discard the use of excited delirium in official proceedings. Over the past 40 years, the discredited, racially biased theory has been used to explain away police culpability for many in-custody deaths. But in October, the American College of Emergency Physicians disavowed a key paper that seemingly gave it scientific legitimacy, and the College of American Pathologists said it as a cause of death.

That same month, California’s Democratic Gov. Gavin Newsom signed the nation’s first law to ban the term “excited delirium” as a diagnosis and cause of death on death certificates, autopsy reports, and police reports. Legislators in other states are expected to consider similar bills next year, and some law enforcement agencies and training organizations have dropped references to excited delirium from their policy manuals and pulled back from training police on the debunked theory.

Despite all that momentum, families, attorneys, policing experts, and doctors say much remains to be done to correct the mistakes of the past, to ensure justice in ongoing trials, and to prevent avoidable deaths in the future. But after years of fighting, they’re heartened to see any movement at all.

“This entire thing, it’s a nightmare,” said Bella Collins, Angelo’s sister. “But there are silver linings everywhere, and I feel so fortunate to be able to see change happening.”

Ultimately, the campaign against excited delirium seeks to transform the way police deal with people undergoing mental health crises.

“This is really about saving lives,” said , an attorney who worked on an influential of excited delirium.

Changing Law Enforcement Training

The use of the term “excited delirium syndrome” became pervasive after the American College of Emergency Physicians on it in 2009. It proposed that individuals in a mental health crisis, often under the influence of drugs or alcohol, can exhibit superhuman strength as police try to control them, and then die suddenly from the condition, not the police response.

The ACEP white paper was significant in catalyzing police training and policy, said , director of criminal justice and policing at Arnold Ventures, one of the largest nonprofit funders of criminal justice policy. The theory contributed to deaths, he said, because it encouraged officers to apply greater force rather than call medical professionals when they saw people in aggressive states.

After George Floyd’s 2020 death, which officers blamed on excited delirium, the American Medical Association and the American Psychiatric Association formally rejected it as a medical condition. Then came disavowals from the National Association of Medical Examiners and the emergency physicians’ and pathologists’ groups this year.

The moves by medical societies to renounce the term have already had tangible, albeit limited, effects. In November, Lexipol, a training organization used by thousands of public safety agencies in the U.S., reiterated its earlier move away from excited delirium, citing the California law and ACEP’s retraction of the 2009 white paper.

Lexipol now guides officers to rely on what they can observe, and not to guess at a person’s mental status or medical condition, said Mike Ranalli, a lawyer and police trainer with the Texas-based group. “If somebody appears to be in distress, just get the EMS,” he said, referring to emergency medical services.

Patrick Caceres, a senior investigator at the Bay Area Rapid Transit’s , successfully pushed to remove excited delirium from the BART Police Department’s policy manual after learning about Quinto’s death in 2020 and seeing the American Medical Association’s rejection of it the following year.

Caceres fears that rooting out the concept — not just the term — more broadly will take time in a country where law enforcement is spread across roughly 18,000 agencies governed by independent police chiefs or sheriffs.

“The kinds of training and the kinds of conversations that need to happen, we’re still a long way away from that,” said Caceres.

In Tacoma, Washington, where three police officers have been charged with the 2020 death of Manuel Ellis, reported that local first responders testified as recently as October that they still “embrace” the concept.

But in Colorado, the state’s Peace Officer Standards and Training board ruled on Dec. 1 to drop excited delirium training for new law enforcement officers, .

And two Colorado lawmakers, Democratic state Reps. and , have drafted a bill for the 2024 legislative session banning excited delirium from other police and EMS training and prohibiting coroners from citing it as a cause of death.

“This idea that it gives you superhuman strength causes the police to think they should respond in a way that is often completely inappropriate for what’s actually happening,” Amabile said. “It just seems obvious that we should stop doing that.”

She would like police to focus more on de-escalation tactics, and make sure 911 calls for people in mental health crisis are routed to behavioral health professionals who are part of .

Taking ‘Excited Delirium’ Out of the Equation

As the Quinto family seeks justice in the death of the 30-year-old Navy veteran, they are hopeful the new refutations of excited delirium will bolster their wrongful death lawsuit against the city of Antioch. On the other side, defense lawyers have argued that jurors should hear testimony about the theory.

On Oct. 26, the family cited both the new California law and the ACEP rebuke of the diagnosis when it asked a U.S. District Court judge in California to exclude witness testimony and evidence related to excited delirium, saying it “cannot be accepted as a scientifically valid diagnosis having anything to do with Quinto’s death.”

“A defense based on BS can succeed,” family attorney Ben Nisenbaum said. “It can succeed by giving jurors an excuse to give the cops a way out of this.”

Meanwhile, advocates are calling for a reexamination of autopsies of those who died in law enforcement custody, and families are fighting to change death certificates that blame excited delirium.

The Maryland attorney general’s office is of autopsies under the tenure of former chief medical examiner David Fowler, who has attributed various deaths to excited delirium. But that’s just one state reviewing a subset of its in-custody deaths.

The family of Alexander Rios, 28, reached a $4 million settlement with Richland County, Ohio, in 2021 after jail officers piled on Rios and shocked him until he turned blue and limp in September 2019. During a criminal trial against one of the officers that ended in a mistrial this November, the pathologist who helped conduct Rios’ autopsy testified that her supervisor as the cause of death even though she didn’t agree. Still, excited delirium remains his official cause of death.

The county refused to update the record, so his relatives are suing to force a change to his official cause of death. A trial is set for May.

Changing the death certificate will be a form of justice, but it won’t undo the damage his death has caused, said Don Mould, Rios’ stepfather, who is now helping to raise one of Rios’ three children.

“Here is a kid that’s life is upside down,” he said. “No one should go to jail and walk in and not be able to walk out.”

In some cases, death certificates may be hard to refile. Quinto’s family has asked a state judge to throw out the coroner’s findings about his 2020 death. But the California law, which takes effect in January and bans excited delirium on death certificates, cannot be applied retroactively, said Contra Costa County Counsel Thomas Geiger in a court filing.

And, despite the 2023 disavowals by the main medical examiners’ and pathologists’ groups, excited delirium — or a similar explanation — could still show up on future autopsy reports outside California. No single group has authority over the thousands of individual medical examiners and coroners, some of whom work closely with law enforcement officials. The system for determining a cause of death is .

“One of the unfortunate things, at least within forensic pathology, is that many things are very piecemeal,” said Anna Tart, a member of the Forensic Pathology Committee of the College of American Pathologists. She said that CAP plans to educate members through conferences and webinars but won’t discipline members who continue to use the term.

, principal research scientist with the Center for Policing Equity, said that medical examiners need even more pressure and oversight to ensure that they don’t find other ways to attribute deaths caused by police restraint to something else.

Only a minority of deaths in police custody now cite excited delirium, he said. Instead, many deaths are being blamed on stimulants, even though fatal cocaine or methamphetamine overdoses are rare in the absence of opioids.

Yet advocates are hopeful that this year marks enough of a turning point that alternative terms will have less traction.

The California law and ACEP decision take “a huge piece of junk science out of the equation,” said Julia Sherwin, a California civil rights attorney who co-authored the Physicians for Human Rights report.

Sherwin is representing the family of Mario Gonzalez, who died in police custody in 2021, in a lawsuit against the city of Alameda, California. Excited delirium doesn’t appear on Gonzalez’s death certificate, but medical experts testifying for the officers who restrained him cited the theory in depositions. 

She said she plans to file a motion excluding the testimony about excited delirium in that upcoming case and similar motions in all the restraint-asphyxia cases she handles.

“And, in every case, lawyers around the country should be doing that,” Sherwin said.

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The in Bridgeport, Connecticut, was familiar with the term from treating patients who were so severely agitated and combative that they needed medication just to be evaluated.

But it gave him pause when excited delirium — and not the restraint tactics used by arresting police officers — was mentioned as a possible factor in the deaths of those two Black men. That’s when Walsh took a closer look at the American College of Emergency Physicians’ , which he and other physicians had relied on to treat such patients, then decided something needed to be done.

“I was disappointed by a lot of stuff in that paper: the quality of the evidence that they cite and just, frankly, odd language,” Walsh said.

Excited delirium is not listed in the standard reference book of mental health conditions, nor does it have its own diagnostic code under a system used by health professionals to identify diseases and disorders. No blood test or other diagnostic test can confirm the syndrome. Most major medical societies, including the and the , no longer recognize excited delirium as a legitimate medical condition. One of the last medical holdouts, the National Association of Medical Examiners, as a cause of death this year.

But the American College of Emergency Physicians, the medical society representing Walsh and more than 36,000 other doctors, still hadn’t disavowed its report that gave excited delirium much of its legitimacy — until this month. On Oct. 12, the group approved a resolution that Walsh co-authored to , removing the only remaining official medical pillar of support for a theory, which despite being based primarily on and racial biases, has played a key role in absolving police of culpability for in-custody deaths.

“This is the membership of ACEP saying we recognize that this was wrong,” said , an emergency physician at Mount Sinai Hospital in New York City. “And now, as an organization, we need to reckon with our history and try to make up for some of the mistakes that were made and repair some of the damage that we did.”

The vote brought some vindication to Verdell and William Haleck, whose son Sheldon died in 2015 after being pepper-sprayed, shocked with a Taser, and restrained. The Utah family lost its civil case against Honolulu police officers, whose lawyers argued the 38-year-old former Hawaii Air National Guardsman had experienced excited delirium. Watching defense experts paint their son as responsible for his own death was excruciating, his parents said.

“We were right all along,” Verdell Haleck said in response to the ACEP vote. “Now our hopes are that the term can never be used again to cause pain and suffering for another family in their pursuit of justice.”

And momentum is building. Just before the vote, California became the first state to ban excited delirium as a diagnosis and cause of death on death certificates, autopsy reports, and police reports, as well as in civil court proceedings.

Backers of the emergency physicians’ resolution hope such disavowals of the term will lead to better training and greater accountability of paramedics and police when they interact with people in mental health crises.

But it is unlikely the doctors’ vote can affect past wrongful death and criminal cases against police. And it remains unclear whether renouncing the 2009 document will prevent defense lawyers in future cases from using similar victim-blaming concepts — just with alternative terminology.

‘This Drastically Affected Our Lives’

Nearly 14 years ago, Patrick Burns, 50, died after sheriff’s deputies hogtied him and shocked him multiple times with Tasers in Sangamon County, Illinois, according to court documents. A medical examiner concluded the official cause of death was excited delirium.

That diagnosis in Burns’ death stymied the family’s lawsuit against the county officers, which ended in a $40,000 settlement in 2015, said Richard Burns, one of Patrick’s brothers. The label also helped law enforcement create a picture of him as someone who was “out of control,” which ruined his brother’s reputation, Richard said. “That picture is implanted on who my brother was, and that’s not the truth.”

The term “excited delirium” dates back decades but has never been supported by rigorous scientific studies. Still, the term persisted as some of its early researchers earned money for testifying as expert witnesses in cases involving law enforcement and the company now called Axon Enterprises, which makes the Taser stun gun.

The theory suggested that agitated, delirious individuals were dying not because they had been shocked by stun guns, restrained with chokeholds, or held facedown so they couldn’t breathe, but because of this unexplained medical condition that could lead to sudden death.

Funding from Taser International, Axon’s former company name, sponsored some of the research forming the basis of ACEP’s white paper supporting the excited delirium theory, according to a . The 19-person task force that drafted the 2009 paper included three people who provided paid testimony or performed consulting work for Taser, that report found. ºÚÁϳԹÏÍø News called eight of the task force members but none agreed to interviews. Axon executives did not respond to calls or emails seeking comment on the white paper.

That ACEP paper described patients with excited delirium as having superhuman strength, being impervious to pain, exhibiting aggressive behavior, and making guttural sounds. To Walsh and other doctors behind the push to reject the diagnosis, those descriptions reflected age-old racist tropes of Black men as being stronger than white men or being animalistic. The persists in modern medicine and has led to disparities in pain treatment.

Indeed, excited delirium has been cited more often in cases involving people of color. According to , at least 56% of police custody deaths from 2010 to 2020 attributed to excited delirium involved Black and Latino victims. attributed to excited delirium also found they overwhelmingly occurred when people were being restrained.

Yet the authority of the esteemed doctors group and its position paper helped cement an alternative cause of death that defense attorneys for police argued in court. And now, it’s likely too late for families who lost cases based on an excited delirium defense. Even with ACEP’s disavowal, courts may be reluctant to reopen resolved cases, said Jim Davy, a civil rights lawyer in Philadelphia.

In June, just months after the National Association of Medical Examiners decided excited delirium should no longer be listed as a cause of death, the county coroner changed Patrick Burns’ official manner of death to homicide. The coroner concluded he had suffered brain damage due to a lack of oxygen after being restrained on his stomach, not from excited delirium.

But the Illinois state attorney declined to pursue new charges against the deputies in Burns’ death.

“It’s more than just an unfortunate story,” Richard Burns said. “This drastically affected our lives.”

Racial Reckoning Sparks Shift

At a 2020 American Medical Association policy conference, medical students spurred by the racial reckoning in the wake of the police-involved deaths of Floyd and many others introduced a series of resolutions around combating racism in medicine, including one against excited delirium. But emergency physicians, who also belong to that broader physician group, objected.

“They’re regarded as the content experts on the issue, and so I think it was hard for us to combat some of those counterarguments at that time,” said , a medical resident and a researcher with the at Harvard University.

Emergency physicians see patients with agitation and delirium more often than clinicians in other specialties do and oversee emergency medical technicians and paramedics who encounter such individuals outside of a hospital.

The AMA decided to study the issue. Its subsequent report firmly sided with the medical students and, in 2021, the AMA delegates issued a strong condemnation of excited delirium as a clinical diagnosis.

But ACEP, which represents a , dragged its feet in addressing its problematic paper. Instead, the group released a new policy statement in 2021 using the term “hyperactive delirium,” saying the guidance was not meant as an update or refutation of the paper.

, an emergency physician in Tulsa, Oklahoma, and one of the authors of the 2021 policy statement, said ACEP didn’t want to issue a statement without providing a clinical document to help guide physicians. And since the task force wanted to focus on clinical considerations, he said, it avoided addressing “excited delirium,” which had been under fire.

“It was being used in nonclinical ways, which no one ever really thought that it would be,” he said. “It was becoming at times a flashpoint between law enforcement and the community at large.”

This spring, the group issued a statement saying it no longer recognized excited delirium as a diagnosis but stopped short of retracting the 2009 white paper. And until this month’s vote, it hadn’t taken any steps to prevent its name and policy statement from being used by defense attorneys defending police in court cases involving in-custody deaths.

Goodloe, who now chairs the ACEP board, said it was hard for ACEP to track individual court cases and what expert witnesses were saying, especially if they were not ACEP members.

“We can’t ensure how nonmedical professionals use a document that is designed to inform and guide medical care,” he said. “I would hope that they would continue to recognize the primary intent of the paper and be very meticulous about avoiding misquoting or mischaracterizing what that paper is for.”

New Terms Arise

The remaining defenders of the term insist that excited delirium is a real condition that puts patients, physicians, and first responders at risk.

One of the 2009 white paper’s co-authors, Deborah Mash, a retired professor of neurology at the University of Miami, declined an interview but wrote in an email that the task force that penned the white paper included some of the most respected thought leaders in emergency medicine at the time, who sought to suggest best practices for treating patients with such symptoms.

Since then, she said, “banning the use of the ‘term’ has caught on with the anti-police movement.”

Mash has for the defense in wrongful death claims filed against Axon over the use of its Tasers.

Some lawyers who bring in-custody death cases on behalf of families believe the ACEP reversal will help wipe out a major police defense tactic.

“It has a huge impact on cases going forward, because the white paper was the main vehicle for trying to legitimize excited delirium,” said Julia Sherwin, a civil rights attorney who is representing the family of Mario Gonzalez, who died in police custody in California in 2021.

But eradicating the term “excited delirium” may not stop police from trying to use the theory behind it to justify the deaths of suspects in custody: The Minneapolis Star-Tribune that a training for the Minneapolis Police Department, which was involved in Floyd’s death, used PowerPoint slides with the words “excited delirium” crossed out and replaced with the term “severe agitation with confusion (delirium).”

Clinical documents from ACEP and other organizations have described the same cluster of symptoms at various times as hyperactive delirium, agitated delirium, or restraint-related cardiac arrest. Defense lawyers might argue the same concept using those terms or rely on other medical conditions to explain a death rather than law enforcement officials’ use of force.

“It’s so easy for them, once the excited delirium argument is dismissed, to use another kind of medical argument that’s quite similar,” said , a social epidemiologist at Harvard University who studies patterns of in-custody deaths.

In April 2021, Gonzalez died after police officers in Alameda, California, restrained him on his stomach, handcuffed him, and placed their weight on him. The county coroner listed his death as a homicide. But ACEP member , one of the co-authors of the 2009 white paper, said in a September 2023 deposition he believed that Gonzalez died of cardiac dysrhythmia, an irregular heartbeat.

Vilke testified in the deposition that he could make up to $50,000 as a defense expert in the case, which is set to go to trial later this year, and that he has testified in restraint or law enforcement-related cases 58 times over the past four years. Vilke declined to comment to ºÚÁϳԹÏÍø News on the white paper.

California’s lists alternative terms — hyperactive delirium, agitated delirium, and exhaustive mania — that will be restricted along with excited delirium starting in January. Nothing in the law prevents defense experts from using other medical explanations, such as cardiac dysrhythmia, for the deaths.

“People in agitated states due to cocaine, methamphetamine or untreated psychiatric illness still require help which is provided by police and first responders,” Mash, who helped create the 2009 paper, wrote in an email. “These individuals are at increased risk of sudden death regardless of what you call it.”

Still, Richard Burns, the Halecks, and others whose loved ones died during police encounters hope the ACEP vote prevents future abuses, pushes more states to follow California’s lead, and boosts police accountability.

“What needs to happen is to focus on the why, the reason, the cause,” said Burns. “The cause is the police brutality, which gets minimized when it’s being able to be hidden behind these terms.”

Chris Vanderveen, KUSA-TV’s director of special projects, contributed to this report.

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

“Nobody’s supposed to die from something like this,” said Haleck’s father, William.

An initial autopsy ruled Haleck’s death a homicide and his family filed a civil lawsuit in federal court against the three officers who tried to remove him from the street. The case should have been “one of the easiest wrongful death cases” to win, said Eric Seitz, an attorney who represented Haleck’s family.

But the officers’ attorneys seized on a largely discredited, four-decade-old diagnostic theory called “excited delirium,” which has been increasingly used over the past 15 years as a legal defense to explain how a person experiencing severe agitation can die suddenly through no fault of the police. “The entire use of that particular theory, I think, is what convinced the jury,” Seitz said.

Haleck’s case is just one legal battle in which the theory of excited delirium exonerated law enforcement despite mounting opposition to the term among most prominent medical groups. The theory has been cited as a defense in the 2020 deaths of George Floyd in Minneapolis; Daniel Prude in Rochester, New York; and Angelo Quinto in Antioch, California. It figures in a criminal trial against two police officers involved in the 2019 death of Elijah McClain in Aurora, Colorado, now underway. It has allowed defense attorneys to argue that individuals in police custody died not of restraint, not of a Taser shock, but of a medical condition that can lead to sudden death.

But now, the American College of Emergency Physicians will vote at an October meeting on whether to formally disavow its supporting excited delirium as a diagnosis that helped undergird those court cases. The draft resolution also calls on ACEP to discourage physicians who serve as expert witnesses from promoting the theory in criminal and civil trials.

“It’s junk science,” said , an emergency medicine physician at UCLA Santa Monica Medical Center, who often testifies as an expert witness. The theory has been used to provide a cover for police misconduct, he said. “It had an agenda.”

Passing the resolution wouldn’t bring Haleck back, but his parents hope it would prevent other families from experiencing their agony. “May that excited delirium die here,” said his mother, Verdell.

Democratic California Gov. Gavin Newsom is considering signing into law that would do much of the same in his state.

“If we don’t fully denounce this now, it will be there for the grasping, again,” said , a physician with the Boston Health Care for the Homeless Program, who co-authored a 2021 editorial calling on organized medicine to denounce excited delirium. “Historically, we know what happens: The pendulum swings the other way.”

Most major medical societies, including the American Medical Association and the American Psychiatric Association, don’t recognize excited delirium as a medical condition. This year, the National Association of Medical Examiners as a cause of death. No blood test or other diagnostic test can confirm the syndrome. It’s not listed in the Diagnostic and Statistical Manual of Mental Disorders, a reference book of mental health conditions, nor does it have its own diagnostic code, a system used by health professionals to identify diseases and disorders.

But the argument’s pervasiveness in excessive-use-of-force cases has persisted in large part because of the American College of Emergency Physicians’ 2009 white paper proposing that individuals in a mental health crisis, often under the influence of drugs or alcohol, can exhibit superhuman strength as police try to control them, and then die from the condition.

The ACEP white paper has been cited in cases across the U.S., and lawyers who file police misconduct cases said that courts and judges accept the science without sufficient scrutiny.

ACEP’s position “has done a lot of harm” by justifying first responder tactics that contribute to a person’s death, said Joanna Naples-Mitchell, an attorney who worked on a of excited delirium. The term has also been used in cases in Australia, the United Kingdom, Canada, and other countries, according to the group.

“This is a really important opportunity for ACEP to make things right,” she said of the upcoming vote.

ACEP officials declined ºÚÁϳԹÏÍø News requests for an interview.

Starting in the mid-1990s, the leading proponents of excited delirium produced research with funding from Taser International, a maker of stun guns used by police, which later changed its name to Axon. The research purported to show that the technique of prone restraint, in which suspects are lying face down on the ground with the police officer’s weight on top of them, and Taser shocks couldn’t kill someone. That research formed the basis of the white paper, providing an alternative cause of death that defense attorneys could argue in court. Many emergency physicians say the ACEP document never lived up to the group’s standard for clinical guidelines.

Axon officials did not respond to a call or email seeking comment on the white paper or the upcoming ACEP vote. In 2017, Taser officials used the American College of Emergency Physicians’ position on excited delirium as evidence that it is a “universally recognized condition,” .

A published in the journal Forensic Science, Medicine, and Pathology concluded no scientific evidence exists for the diagnosis, and that the authors of the 2009 white paper engaged in circular reasoning and faulty logic.

“Excited delirium is a proxy for prone-related restraint when there is a death,” said , an associate professor of forensic medicine at Maastricht University in the Netherlands, who co-authored the review. “You don’t find that people get ‘excited delirium’ if they haven’t also been restrained.”

Between 2009 and 2019, Florida medical examiners attributed 85 deaths to excited delirium, and at least 62% involved the use of force by law enforcement, according to . Black and Hispanic people accounted for 56% of 166 deaths in police custody attributed to excited delirium from 2010 to 2020, according to .

This year, ACEP saying the group no longer recognizes the term “excited delirium” and to doctors on how to treat individuals presenting with delirium and agitation in what it now calls “hyperactive delirium syndrome.” But the group stopped short of retracting the 2009 white paper. For the past 14 years, ACEP took no steps to withdraw the document or to discourage defense attorneys from using it in court.

Even now, lawyers say, they must continually debunk the theory.

“Excited delirium has continued to come up in every single restraint asphyxia case that my partner and I have handled,” said , a California civil rights attorney. “Instead of acknowledging that the person died from the police tactics, they want to point to this alternate theory of deaths.”

Now, plaintiffs’ attorneys say, if ACEP passes the resolution it would be the most meaningful step yet toward keeping the theory out of the courtroom. The resolution calls on ACEP to “clarify its position in writing that the 2009 white paper is inaccurate and outdated,” and to withdraw approval for it.

Despite the theory’s lack of scientific underpinning, backers of the ACEP resolution expect heated debate before the vote scheduled for the weekend of Oct. 7-8. Emergency physicians often encounter patients with agitation and delirium, they say, and are sympathetic to other first responders who share the challenge of managing such patients. While they have tools like sedation to help them in the emergency room, law enforcement officials must often subdue potentially dangerous individuals without such help.

Most people won’t die as a result of police tactics such as prone restraint or Taser use, but a small fraction do.

“It’s a crappy, crappy situation, when you have someone who’s out of control, who can’t make decisions for himself, and is potentially a threat somewhere,” said , an emergency medicine professor at the University of Washington. “It’s not like they have a sticker on their head that says, ‘Hey, I’m at high risk. If you hold me down, then I could go into sudden cardiac arrest.’”

Nonetheless, sentiment is growing among emergency physicians that the 2009 ACEP white paper has resulted in real harm and injustices, and it’s time to set it aside.

“We’ll be able to close the chapter on it and move forward to recognize explicitly that this was in error,” said , an emergency physician from Bridgeport, Connecticut, and a key player in bringing the resolution up for a vote. “We definitely have an ethical responsibility to address mistakes or evolutions in medical thinking.”

Chris Vanderveen, KUSA-TV’s director of special projects, contributed to this report.

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

But this community of about 315 and its four marijuana dispensaries — one shop for every 79 residents — is a contender for the title of cannabis capital of Colorado.

Dinosaur, nestled in the northwestern corner of the state, is a five-minute drive to the Utah line and a couple of hours away from Wyoming, both states where recreational marijuana use is illegal.

Dinosaur lies at the intersection of U.S. Highway 40 (that’s Brontosaurus Boulevard) and Colorado Highway 64 (Stegosaurus Freeway). The crossroads had long been a stop where truckers filled their fuel tanks and their bellies. But until weed came to town, there was little to sustain the local economy.

It’s a classic story of a border town prospering from differing laws state to state, and how arbitrary lines drawn through a desolate landscape drive economic patterns. Coloradans from Dinosaur cross the border to get groceries and health care. Utahans come to Dinosaur for lottery tickets, liquor, and pot.

The four cannabis stores, which opened after the passage of a 2016 ballot measure, have changed the fortunes of a town that made repeated losing bets on other commodities before finally hitting the jackpot with marijuana.

“You’d be shocked how much money comes through here,” said Jim Evans, the town’s treasurer. “There’s money running out of our ears.”

Lando Blakley, who has lived in Dinosaur most of his life, opened the town’s third retail store, Dino Dispensary, in 2018. He estimates that 95% of his business comes from out-of-state customers, some from as far away as North Dakota.

“Right now, cannabis is Dinosaur’s lifeblood,” he said.

Utah has legalized medical marijuana, but with tight restrictions and few places to buy it. So, patients may have to travel hours to outlets in Salt Lake City or Ogden for an in-state supplier. But for those living in Vernal or other eastern towns, Dinosaur is the closest place to buy cannabis in person.

“If anyone had to travel in the wintertime to go to a dispensary in Salt Lake City, they’re not going to do it,” said Michael, a 37-year-old who, like most pot-shop customers who spoke with ºÚÁϳԹÏÍø News, declined to give his last name after buying marijuana at one of the stores. “Why drive 300 miles and put your life at risk, when you can drive 30?”

It is illegal to bring marijuana over the border to Utah, but multiple customers said they’ve never had a problem. Still, a traffic stop for other reasons could have more serious consequences if police find marijuana in the car.

Utah residents Jackson and Chelsea order their cannabis online from Rocky Mountain Cannabis, located, appropriately, at 420 E. Brontosaurus Blvd. (420 is shorthand for smoking marijuana), and drive across the state line to pick it up.

“Everybody in Utah goes and gets their green card and then comes here and gets their marijuana,” Jackson said.

The cards, carried by people registered with Utah’s medical marijuana program (about 70,000 of the state’s 3.4 million residents), provide cover in case they get pulled over. Other customers say it’s not worth the hassle to apply for a card and pay the $15 annual fee when none of that is required in Colorado.

At least two other Colorado towns rival Dinosaur in per capita retail cannabis outlets. Moffat in south-central Colorado boasts four marijuana stores in a town and surrounding area of just 818 people, due to a massive cannabis .

Sedgwick is another border town that has banked on weed, with three stores and a population of 172. The town sits in the northeastern corner of the state, less than 10 minutes from Nebraska, where marijuana is illegal for both medical and recreational use.

Some border towns opted against allowing marijuana stores, such as Rangely, from which residents now make the 18-mile trip to Dinosaur to buy cannabis.

The four stores in Dinosaur are bunched on the east side of town, just off Highway 40, pretty much the only locations that satisfy the town mandate to be at least 1,000 feet from a school. Most outlets want to be along the highway, to capture customers passing through. Someone could easily walk to all four stores, and some people do just that to dodge the state’s daily 1-ounce purchase limit.

To say that cannabis has transformed the appearance of town would be a stretch. It remains a sleepy little town, with little else to drive its economy. Despite the thriving marijuana trade, there still seem to be more closed businesses than open ones.

In fact, the town isn’t quite sure what to do with all the money it collects. It once limped along with an annual budget of $100,000 or less, but Dinosaur now rakes in that much each month in cannabis revenue alone.

In 2021, the town collected about $1.4 million in cannabis-related taxes and licensing fees.

When it first approved cannabis sales, the town collected a 5% tax that flowed into its general revenue fund. Residents voted to add a second 5% tax earmarked for infrastructure projects. It collects licensing fees from the retail stores and a marijuana grow operation and gets a portion of the cannabis revenue collected by the state.

That money has allowed the town to build new sewage ponds, repaint the inside of its water tank, and add new housing lots with paved roads and sewer and water connections. The town is in the midst of a beautification project, planting trees and flowers, and is refurbishing the former school building into a community recreation center. Where the town previously relied on the county sheriff for law enforcement and suffered through long response times, it has now hired three marshals of its own.

And last year, for the first time in decades, the town revived its annual festival, now called the Dinosaur Stone Age Stampede, with food, games, and music.

But most of the marijuana tax revenue goes into savings. The town expects to have about $3.5 million in its coffers by year-end, and, Evans said, Dinosaur draws some $230,000 a year in interest alone.

Becoming a cannabis hot spot wasn’t a given. Heated debate erupted when the Town Council first considered allowing retail stores. Town leaders ultimately decided to let the residents choose at the polls. An initial ballot measure in 2010 failed.

By 2016, opinions changed as residents saw other border towns in Colorado flourishing while their town was quickly becoming … well, a dinosaur.

“People were seeing that the towns that had [legalized] was prospering,” said Mayor Richard Blakley, 70, who is the father of Dino Dispensary owner Lando Blakley. “And no real bad crime increase or stuff like that.”

The settlement that became Dinosaur was initially called Baxter Flats, but was established as a town in 1947, and named Artesia, a nod to the artesian wells in the surrounding hills. In 1966, the National Park Service told local leaders if they changed the name to Dinosaur, the town would prosper from its connection to the national monument known for its prehistoric fossils and petroglyphs.

Residents agreed and renamed their home and the streets. But prosperity never followed, in part because the Colorado side of the national monument has few dinosaur fossils. It’s mostly a showcase of geology.

“People come in and ask, ‘Where’s the museum? Where’s the skeletons?’” Evans said. Other than a few scientifically questionable dinosaur sculptures, there’s no Tyrannosaurus rex or Stegosaurus, no Velociraptor or Allosaurus.

As the national park rangers say, Utah has the bones, Colorado has the stones — or, as people say on the Utah side of the border, the stoned.

“We have a reputation,” Evans said. “You talk about Dinosaur in Utah, and it’s like, ‘Yeah, they’re all potheads and stuff.’”

The mayor said the town has seen few negative consequences from allowing marijuana, among them some people unprepared for the drug’s potency being sickened by it. The town is growing. The population, which had dropped to 243 residents in the 2020 census, has rebounded to about 315, Blakley said. Many people have also purchased vacant lots to take advantage of the relatively cheap cost of real estate, making it difficult to find land in town.

Blakley hopes the economic growth will bring a grocery store. Residents drive 40 minutes to Vernal, Utah, or two hours to Grand Junction, to stock up on food or to receive medical care. Children go to school in Rangely since Dinosaur’s school closed years ago. An urgent care clinic opened across from the town hall a few years ago, but it couldn’t make a go of it.

Even if Dinosaur continues to grow, it won’t add more cannabis stores. The Town Council capped the available licenses at four. And those four stores are now the essence of Dinosaur.

“Otherwise,” Evans, the treasurer, said, “this is a sad little town.”

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Before she started taking the drug, she would wind up in the hospital for weeks at a time until antibiotics could eliminate the infections in her lungs. Every day, she would wear a vest that shook her body to loosen the mucus buildup.

One particularly bad flare-up, known as a pulmonary exacerbation, had her coughing up blood in 2019, so she was put on the newly approved breakthrough medication.

Within a month, her lung function increased by 20%, she said, and her health improved. Before she started taking Trakafta, she could count on three to four hospitalizations a year. Over the four years on the medication, she has been hospitalized only once.

“I was spending hours a day doing airway clearance and breathing treatments, and that has been significantly reduced,” said the 37-year-old Erie, Colorado, mother. “I’ve gained hours back in my day.”

Now she runs and hikes in the thin Colorado air and works a full-time job. Other patients have seen similar gains with the drug therapy, allowing many to resume regular lives and even take themselves off waiting lists for a lung transplant. Yet Walker and scores of other Colorado patients with cystic fibrosis are worried they could lose access to that transformative medication.

A state board charged with addressing the affordability of the most expensive prescription drugs has chosen Trikafta among its first five drugs to review, and it could move to cut the medication’s average in-state annual price of approximately $200,000, accounting for both insurers’ contributions and patients’ out-of-pocket costs. Drugmakers, including Trikafta’s maker, , have said payment limits could hurt innovation and limit access, stoking panic among patients that the drug might no longer be sold in Colorado.

Two of the drugs chosen by the state board, the rheumatoid arthritis treatment Enbrel and the psoriasis medication Stelara, also appear on for which Medicare will negotiate prices. Any federally negotiated price reductions won’t go into effect until 2026, and it’s unclear how that effort will affect the Colorado board’s work in the interim.

The Colorado board’s choice of drugs to review elucidates one of the thorniest questions the board must wrangle with: Would lowering the price tag for rare-disease medications lead manufacturers to pull out of the state or limit their availability? State officials contend that the high cost of prescription drugs puts them out of reach for some patients, while patients worry that they’ll lose access to a life-changing therapy and that fewer dollars will be available to develop breakthrough medications. And with affordability boards in other states poised to undergo similar exercises, what happens in Colorado could have implications nationwide.

“It just puts Trikafta as a whole at risk,” Walker said. “It would start here, but it could create a ripple effect.”

Cystic fibrosis is a genetic condition that causes the body to produce thick, sticky mucus that clogs the lungs and digestive system, leading to lung damage, infections, and malnutrition. It is a progressive disease that results in irreversible lung damage and a median age of death of 34 years. There is no cure.

The rare disease affects fewer than 40,000 people in the U.S., including about 700 in Colorado. That means research and development costs are spread across a smaller number of patients than for more common conditions, such as the millions of people with heart disease or cancer.

Officials from Vertex Pharmaceuticals declined a request for an interview. But company spokesperson Sarah D’Souza emailed a statement saying that “the price of this medicine reflects its value to patients, the small number of people living with CF, the billions of dollars Vertex has invested to date to develop the first medicines to treat the underlying cause of CF, and the billions more we are investing in CF and other serious diseases.”

Setting an upper payment limit, the company said, could hinder access to drugs like Trikafta and curtail investment in scientific innovation and drug discovery.

State officials counter that Vertex and other drugmakers are resorting to fear-mongering to protect their profits.

Colorado Insurance Commissioner Michael Conway said that whenever the state talks about saving people money on health care, the affected entity — be it a hospital, insurance company, or drug manufacturer — cries foul and claims there will be an access problem.

“This is just, from my vantage point, the pharmaceutical industry trying to scare people,” he said.

Colorado’s has been working for more than a year to sort through eligible for review, with 17 data points for each, to create a prioritized list. In the end, they decided to focus this year only on drugs that had no brand-name competition or generic alternatives that could lower costs.

Besides Trikafta, Enbrel, and Stelara, the board will review the affordability of the antiretroviral medication Genvoya, used to treat HIV, and another psoriasis treatment, Cosentyx.

Of those five, Trikafta had the highest average annual costs but the lowest five-year increase in price and the fewest patients taking it.

The board’s review of the five drugs will happen over its next three to four meetings this year and early next year, allowing all stakeholders — including patients, pharmacies, suppliers, and manufacturers — to provide feedback on whether the drugs are indeed unaffordable and what a reasonable price should be. Any cost limits wouldn’t take effect until next year at the earliest.

The board looked at what patients were paying out-of-pocket for their medicines, using a database that captures all the insurance claims in the state. But that data did not account for patient assistance programs, through which manufacturers reimburse patients for out-of-pocket costs. Such programs boost manufacturer sales of drugs because insurance covers most of the cost, and patients otherwise might not be able to afford them.

Through the first half of the year, Vertex of $1.6 billion, with 89% of its revenue coming from Trikafta (marketed as Kaftrio in Europe). At the beginning of the year, Vertex decreased copay assistance for people with cystic fibrosis, in what the company said was a response to insurers’ limiting patients’ ability to apply copay assistance to their deductibles.

Lila Cummings, director of the Colorado board, said its staff could not find any entity that collects data on patient assistance programs, so those figures were not available to the board. Once they begin reviewing the individual medications, board members will dig into what extra financial help patients are getting. Cummings also said the board is hoping manufacturers will convey in good faith what might prompt them to leave the Colorado market.

When Trikafta came up second on the Colorado board’s prioritized list of drugs eligible for review, patients and advocacy groups flooded the board with pleas to leave pricing for the medication and other drugs for rare diseases untouched.

“People are scared,” Walker said. “If you look at all the drugs out there, it’s one that has been so transformational that I think it will go down in history for how positively it’s impacted our population as a whole.”

According to the , lung exacerbations dropped 65% and lung transplants dropped 80% after the drug’s approval. More patients have been able to work, attend school, or start a family. Clinicians have reported a among patients who take Trikafta.

published this year showed that two-thirds of people with cystic fibrosis struggled with finances, experiencing debt, food insecurity, or trouble paying for household or health expenses. The survey was conducted in 2019, before the FDA approval of Trikafta.

Years ago, the Cystic Fibrosis Foundation invested in Aurora Biosciences, later acquired by Vertex Pharmaceuticals, to promote development of cystic fibrosis therapies. The foundation completed the sale of its royalty rights in 2020.

Mary Dwight, chief policy and advocacy officer for the Cystic Fibrosis Foundation, said the board should “ensure its review of Trikafta accounts for the overall value this drug has for someone with CF, including the impact on an individual’s long-term health and well-being.”

There is no guarantee that the Colorado board will take action on Trikafta. State officials have stressed that board members are solely focused on improving access and wouldn’t jeopardize the availability of the medication.

“We have a history of being able to save people money on health care that doesn’t lead to access problems,” Conway said. “We’re not talking about these companies losing money at all; we’re talking about making it more affordable so that more Coloradans can get access to the pharmaceutical needs that they have.”

But Walker remains unconvinced.

“They had so much testimony on their call and they still selected Trikafta,” she said. “Everyone was just saying how important this drug is, and it didn’t matter. It still got pushed through.”

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The two hospitals in Pueblo, and , do not pay most federal or state taxes. In exchange for the tax break, they are required to spend money to improve the health of their communities, including providing free care to those who can’t afford their medical bills. Although the hospitals report tens of millions in annual community benefit spending, the vast majority of that is not spent on the types of things advocates and researchers contend actually create community benefits, such as charity care.

And this month, four U.S. senators the Treasury’s inspector general for tax administration and the Internal Revenue Service to evaluate nonprofit hospitals’ compliance with tax-exempt requirements and provide information on oversight efforts.

The average hospital in the U.S. spends 1.9% of its operating expenses on charity care, according to an analysis of 2021 data by Johns Hopkins University health policy professor Ge Bai. Last year, Parkview provided 0.75% of its operating expenses, about $4.2 million, in free care.

Centura Health, a chain of 20 tax-exempt hospitals, reports its community benefit spending to the federal government in aggregate and does not break out specific numbers for individual hospitals. But St. Mary-Corwin reported $2.3 million in charity care in fiscal year 2022, according to its state filing. The filing does not specify the hospital’s operating expenses.

The low levels of charity care have translated into more debt for low-income residents. About 15% of people in Pueblo County have medical debt in collections, compared with 11% statewide and 13% nationwide, according to from the Urban Institute. Those Puebloans have median medical debt of $975, about 40% higher than in Colorado and the U.S. as a whole. And all of those numbers are worse for people of color.

“How far into debt do people have to go to get any kind of relief?” said Theresa Trujillo, co-executive director at the Center for Health Progress’ Pueblo office. “Once you understand that there are tens of millions of dollars every single year that hospitals are extracting from our communities that are meant to be reinvested in our communities, you can’t go back from that without saying, ‘Oh my gosh, that is a thread we need to pull on.’”

Trujillo is organizing a group of fed-up residents to engage both hospitals on their community benefit spending. The group of at least a dozen residents believe the hospitals are ignoring the needs identified by the community — things like housing, addiction treatment, behavioral health care, and youth activities — and instead spending those dollars on things that mainly benefit the hospitals and their staffs.

For the fiscal year ending June 2022, with total revenue of $593 million, Parkview reported $100 million in community benefit spending. But most of that — more than $77 million — represented the difference between the hospital’s cost of providing care and what Medicaid paid for it.

IRS guidelines allow hospitals to claim Medicaid shortfall as a community benefit, but many academics and health policy experts argue such balance sheet shifts aren’t the same as providing charity care to patients.

Parkview also reported $4.7 million for educating its medical staff and $143,000 in incentives to recruit health professionals as community benefit. The hospital spent only $44,000 on community health improvement projects, which appear to have consisted mainly of launching a new mobile app to streamline appointments and referrals.

Meanwhile, the hospital recently spent $58 million on a new orthopedic facility and $43 million on a new cancer center. Parkview also wrote off $39 million in bad debt in fiscal 2022, although that is different from charity care. The bad debt is money the hospitals tried to collect from patients and ultimately decided they’d never get. But by that time, those patients would likely have been sent to collections and potentially had their credit damaged. And outstanding debt often keeps patients from seeking other needed care.

There is a disconnect between what the community said its biggest health needs were and where Parkview directed its spending. The hospital’s community needs assessment pegged access to care as the top concern, and the hospital said it launched the phone app in response.

The second-largest perceived health need was addressing alcohol and drug use. Yet, the only initiative Parkview cited in response was posting preventive health videos online, including some on alcohol and drug use. Meanwhile, the hospital its inpatient psychiatric unit.

Parkview declined to answer questions about its charity care spending, but hospital spokesperson Todd Seip emailed a statement saying the hospital system “has been committed to providing extensive charity care to our community.”

Seip noted that 80% of Parkview’s patients are covered by Medicare or Medicaid, which pay lower rates than commercial insurance. The hospital posted a net loss of $6.7 million in the 2022 fiscal year, although its charity care wasn’t appreciably higher in previous years in which it posted a net gain.

Centura St. Mary-Corwin reported $16 million in Medicaid shortfall and $2 million in medical staff education in 2022, according to its state filing. The hospital spent about $38,000 for its community health improvement projects, primarily on emergency medical services outreach programs in rural areas. The hospital provided another $96,000 in services, mainly to promote covid-19 vaccination.

Centura also declined to answer questions about its charity care spending. Hospital spokesperson Lindsay Radford emailed a statement saying St. Mary-Corwin was aligning its community health needs assessment process with the Pueblo Department of Public Health and Environment “to develop shared implementation strategies for our community benefit funds, ensuring the resources are targeting the highest needs.”

Trujillo questioned how the hospital has conducted its community health assessments, relying on a social media poll to identify needs. After community members identified 12 concerns, she said, hospital leaders chose their priorities from the list.

“They talk about a community garden like they’re feeding the whole south side of the community,” Trujillo said. The hospital in 2021, with 20 beds that could be adopted by residents to grow vegetables. Trujillo did praise the hospital for providing part of its building for a community college nursing program.

Trujillo’s group has spent much of the summer researching hospital charity spending and showing up at public meetings to have their views heard. They are working to gain seats on hospital and other state boards that influence how community benefit dollars are spent, and are urging hospitals to reconfigure their boards to better represent the demographics of their communities.

“We’ve made folks now aware that we want to be a part of those processes,” Trujillo said. “We’re willing to help them reach deeper into the community.”

Tax-exempt hospitals have been under increased state scrutiny for their charitable spending, especially after the Affordable Care Act and Medicaid expansion drove down the uninsured rate. That in turn cut the amount of care hospitals had to provide without being paid, potentially freeing up money to help more people without insurance or with high-deductible plans.

In Colorado, hospitals’ charity care spending and bad debt write-offs dropped from an average of $680 million a year in the five years prior to the ACA being fully implemented in 2014 to an average of $337 million in the years after, the Colorado Healthcare Affordability and Sustainability Enterprise Board, a state advisory group.

In states like Colorado, which used federal funding to expand the number of people covered by Medicaid, hospitals shifted more of their community benefit spending to cover Medicaid reimbursement shortfalls.

A January report from Colorado’s Department of Health Care Policy & Financing concluded that payments from public and private health plans help the state’s hospitals make more than enough money to offset lower Medicaid rates and still turn a profit while providing more true charity care.

Colorado has enacted two bills in the past five years to increase the transparency of hospitals’ charitable efforts with new reporting requirements.

“I think overall, we’re pleased with the amount of money that hospitals are reporting they spent,” said Kim Bimestefer, the executive director of the Department of Health Care Policy & Financing. “Is that money being expended in meaningful ways, ways that improve health and well-being of the community? Our reports right now can’t determine that.”

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The takeover by Tower Health meant the 219-bed Pottstown Hospital no longer had to pay federal and state taxes. It also no longer had to pay local property taxes, taking away more than $900,000 a year from the already underfunded Pottstown School District, school officials said.

The district, about an hour’s drive from Philadelphia, had no choice but to trim expenses. It cut teacher aide positions and eliminated middle school foreign language classes.

“We have less curriculum, less coaches, less transportation,” said Superintendent Stephen Rodriguez.

The school system appealed Pottstown Hospital’s new nonprofit status, and earlier this year a state court the facility’s property tax break. It cited the “eye-popping” compensation for multiple Tower Health executives as contrary to how Pennsylvania law defines a charity.

The court decision, which Tower Health is appealing, stunned the nonprofit hospital industry, which includes roughly nationwide.

“The ruling sent a warning shot to all nonprofit hospitals, highlighting that their state and local tax exemptions, which are often greater than their federal income tax exemptions, can be challenged by state and local courts,” said Ge Bai, a health policy expert at Johns Hopkins University.

The Pottstown case reflects the growing scrutiny of how much the nation’s nonprofit hospitals spend — and on what — to justify billions in state and federal tax breaks. In exchange for these savings, hospitals are supposed to provide community benefits, like care for those who can’t afford it and free health screenings.

More than a dozen states have considered or passed legislation to better define charity care, to increase transparency about the benefits hospitals provide, or, in some cases, to set minimum financial thresholds for charitable help to their communities.

The growing interest in how tax-exempt hospitals operate — from lawmakers, the public, and the media — has coincided with a stubborn increase in consumers’ medical debt. ºÚÁϳԹÏÍø News reported last year that more than 100 million Americans are saddled with medical bills they can’t pay, and has documented aggressive bill-collection practices by hospitals, many of them nonprofits.

In 2019, Oregon passed legislation to set floors on community benefit spending largely based on each hospital’s past expenditures as well as its operating profit margin. Illinois and Utah created spending requirements for hospitals based on the property taxes they would have been assessed as for-profit organizations.

And a congressional committee in April .

“States have a general interest in understanding how much is being spent on community benefit and, increasingly, understanding what those expenditures are targeted at,” said Maureen Hensley-Quinn, a senior director at the National Academy for State Health Policy. “It’s not a blue or red state issue. It really is across the board that we’ve been seeing inquiries on this.”

Besides providing federal, state, and local tax breaks, nonprofit status also lets hospitals benefit from tax-exempt bond financing and receive charitable contributions that are tax-deductible for the donors. Policy the total value of nonprofit hospitals’ exemptions in 2020 at about $28 billion, much higher than the $16 billion in free or discounted services they provided through the charity care portion of their community benefits.

Federal law defines the sort of spending that can qualify as a community benefit but does not stipulate how much hospitals need to spend. The range of community benefit activities, reported by hospitals , varies considerably by organization. The spending typically includes charity care — broadly defined as free or discounted care to eligible patients. But it can also include underpayments from public health plans, as well as the costs of training medical professionals and doing research.

Hospitals also claim as community benefits the difference between what it costs to provide a service and what Medicaid pays them, known as the Medicaid shortfall. But some states and policy experts argue that shouldn’t count because higher payments from commercial insurance companies and uninsured patients paying cash cover those costs.

Bai, of Johns Hopkins, collaborated on that found for every $100 in total spending, nonprofit hospitals provided $2.30 in charity care, while for-profit hospitals provided $3.80.

Last month, another study in Health Affairs reported in nonprofit hospitals’ operating profits and cash reserves from 2012 to 2019 “but no corresponding increase in charity care.”

And an April report by the Lown Institute, a health care think tank, said more than 1,350 nonprofit hospitals , meaning the value of their community investments fails to equal the value of their tax breaks.

“With so many Americans struggling with medical debt and access to care, the need for hospitals to give back as much as they take grows stronger every day,” said Vikas Saini, president of the institute.

The Lown Institute does not count compensating for the Medicaid shortfall, spending on research, or training medical professionals as part of hospitals’ “fair share.”

Hospitals have long argued they need to charge private insurance plans higher rates to make up for the Medicaid shortfall. But a from Colorado found that, even after accounting for low Medicaid and Medicare rates, hospitals get enough from private health insurance plans to provide more charity care and community benefits than they do currently and still turn a profit.

The American Hospital Association strongly disagrees with the Lown and Johns Hopkins analyses.

For many hospitals — after dozens of closures over the past 20 years — “just keeping your doors open is a clear community benefit,” said Melinda Reid Hatton, general counsel for the AHA. “You can’t focus entirely on charity care” as a measure of community benefit. Hospitals deliver nine times the community benefit for every dollar of federal tax avoided, Hatton said.

The 2010 Affordable Care Act, she noted, imposed additional community benefit mandates. Tax-exempt hospitals must conduct a community health needs assessment at least once every three years; establish a written financial assistance policy; and limit what they charge individuals eligible for that help. And they must make a reasonable attempt to determine if a patient is eligible for financial assistance before they take “extraordinary collection actions,” such as reporting people to the credit bureaus or placing a lien on their property.

Still, the Government Accountability Office, a congressional watchdog agency, argues that community benefit is poorly defined.

“They’re not requirements,” said Jessica Lucas-Judy, a GAO director. “It’s not clear what a hospital has to do to justify a tax exemption. What’s a sufficient benefit for one hospital may not be a sufficient benefit for another.” The GAO, in a , said it found 30 nonprofit hospitals that got tax breaks in 2016 despite reporting no spending on community benefits.

The GAO then recommended Congress consider specifying the services and activities that demonstrate sufficient community benefit.

The tax and benefit question has become a bipartisan issue: Democrats criticize what they see as scant charity care, while Republicans wonder why nonprofit hospitals get a tax break.

In Georgia, Democratic lawmakers and the NAACP spearheaded the filing of a complaint to the IRS about Wellstar Health System’s nonprofit status after it closed two Atlanta-area hospitals in 2022. The complaint noted the system’s proposed merger with Augusta University Health, under which Wellstar would open a new hospital in an affluent suburban county.

“I understand you pledged over $800 million” in the deal with AU Health, state Sen. Nan Orrock, an Atlanta Democrat, told Wellstar executives at a recent legislative hearing, citing the system’s disinvestment in Atlanta. “Doesn’t sound like a nonprofit. It sounds like a for-profit approach.”

Wellstar said it provides more uncompensated health care services than any other system in Georgia, and that its 2022 community benefit totaled $1.2 billion. Wellstar attributed the closures to chronic financial losses and an inability to find a partner or buyer for the inner-city hospitals, which served a disproportionately large African American population.

In North Carolina, a Republican candidate for governor, state Treasurer Dale Folwell, said many hospitals “have disguised themselves as nonprofits.”

“They’re not doing the job. It should be patients over profits. It’s always now profits over patients,” he said.

Ideas for reforms, though, have run up against powerful hospital opposition.

Montana’s state health department proposed developing standards for community benefit spending after a 2020 legislative audit found nonprofit hospitals’ reporting vague and inconsistent. But the Montana Hospital Association opposed the plan, and the idea was dropped from the bill that passed.

Pennsylvania, though, has a unique but strong law, Bai said, requiring hospitals to prove they are a “purely public charity” and pass a five-pronged test. That may make the state an easier place to challenge tax exemptions, Bai said.

This year, the Pittsburgh mayor challenged the University of Pittsburgh Medical Center over the tax-exempt status of some of its properties.

Nationally, Bai said, “I don’t think hospitals will lose tax exemptions in the short run.”

But, she added, “there will likely be more pressure from the public and policymakers for hospitals to provide more community benefit.”

Mountain States editor Matt Volz contributed to this report.

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At best, a Colorado panel of medical and pharmacy experts seeking to cut the costs of expensive drugs will be able to help only one of them.

Starting this summer, the state’s Prescription Drug Affordability Board will choose up to 18 high-cost drugs for review over the next three years to determine if the medications are unaffordable and whether to cap what health plans and consumers pay for them.

But with hundreds of expensive drugs to choose from, the board members face tough decisions about who will get help now and who will have to wait.

Do they tackle drugs with extremely high costs taken by only a handful of patients, or drugs with merely very high costs taken by a larger group? Should they consider only out-of-pocket costs paid by consumers, such as for insulin, whose copays Colorado caps at $50 a month, or the total cost of the drug to the health system? Will they weigh only drug prices, or will they try to right social wrongs with their choices?

And what does “affordable” even mean?

“That question alone is a lot harder to answer than it might seem at face value,” said Jennifer Reck, project director for the National Academy for State Health Policy’s Center for State Prescription Drug Pricing. “You immediately get into how utterly complex our drug supply chain is, how opaque it is, how many different prices there are,” she said.

Maryland was the first state to establish a drug affordability board in 2019, but funding challenges and the pandemic have slowed its progress. Colorado passed a bill creating its board in 2021 and has already moved ahead of Maryland in the process. Washington followed in 2022 but is still in its early phases of implementation.

Maine, New Hampshire, Ohio, and Oregon have also established boards, but they lack the power to limit drug payments. And at the federal level, the Inflation Reduction Act of 2022 included a the Health and Human Services secretary to negotiate prices with drug companies for a small number of the most costly medications covered by Medicare.

It’s taken years for the Colorado and Maryland board members to create all the rules and regulations to govern their work before getting to the point of looking at specific drugs.

“It’s just a long, tortuous government process to get things up and running,” said Gerard Anderson, a professor of health policy and management at Johns Hopkins University, and a member of Maryland’s board. “You basically have to dot every ‘i’ and cross every ‘t’ in order not to get sued.”

Setting Priorities

On May 12, Colorado released its first list of eligible for review, mostly because they each cost more than $30,000 for a course of treatment. Next month, they’ll release a dashboard ranking those drugs according to the board’s priorities. The dashboard can also be used to examine which drugs have the highest price tags, which have had the largest increases in price, and which the state spends the most on. That would allow the board to begin affordability reviews this summer and set payment limits for the first four to eight drugs sometime in 2024. But board members will first have to set their priorities, and those could change from year to year.

“Maybe one year we focus on the impact to the system, and another year we focus on out-of-pocket costs, and one year we focus on a lifesaving drug that has smaller utilization,” said Lila Cummings, director of the Colorado board.

Such approaches could pit one group of patients against others looking for cost relief. But Cummings said not all groups are eager to see payment limits.

“Some of them said, ‘We want the board to focus on our drugs,’ and others said, ‘Please leave us alone,’” she said.

That reluctance likely reflects the close ties that some patient groups have with the manufacturers of their medications, including receiving funding from the drugmakers.

“We have seen cases in public hearings — it seems counterintuitive or surprising — where a patient group, instead of being thrilled that they might have access to the drugs at a lower price, instead are arguing against upper payment limits,” Reck said. “But in most cases, there’s a pretty clear financial connection to drug manufacturers.”

Maryland has also received input from patient groups as it finalizes its regulations.

“So far it has not been, ‘Pick me! Pick me! Pick me!’” Anderson said. But that could change once the Maryland board begins its affordability reviews this fall.

The drug that Garcia, 47, of Denver, takes did not make the board’s list. Diagnosed with four bleeding disorders, including von Willebrand disease, he needs the medication Humate-P, made by CSL Behring, to replace one of the clotting factors missing in his blood. This winter, driving home from his job at the airport, Garcia hit a patch of black ice, spun out, and careened into a concrete barrier at 75 mph. He needed the expensive medication every day for the first five days after the accident, and then every other day for a full month.

“It’s not like I can just sit there and say no to this medication, because my bleeds get so bad,” he said.

According to Perry Jowsey, executive director of the National Hemophilia Foundation’s Colorado chapter, about 300 to 400 individuals are being treated for von Willebrand disease in Colorado. That’s far fewer than the roughly 10,000 Coloradans with MS or the 74,000 who manage their diabetes with insulin.

“In my shoes, I would target what would help the most people,” Garcia said. “You have to find a balance, especially starting out. You’re not going to be able to help everyone.”

The Colorado and Maryland boards will rely on data from state databases that show how much various public and private health plans pay for drugs. That data, however, doesn’t capture what uninsured patients pay, and it doesn’t give any insight into how much manufacturers pay for research and development.

“The goal is not to stifle innovation,” Anderson said. “But we can’t get any public data, so we have to ask the pharmaceutical industry, and they’re not required to give us the data.”

The boards want to ensure that patients like Reitzel still have access to new and better therapies. Reitzel, 38, of Highlands Ranch, was diagnosed with multiple sclerosis in 2008 and has switched medications several times seeking one whose side effects she could tolerate. “They’re all terrible in their own special way,” she said.

In 2021, she began taking a relatively new drug from Biogen and Alkermes called Vumerity, which was included on Colorado’s list of eligible drugs. But the cost of a three-month supply was nearly $24,000, including a copay of more than $7,000. Biogen provides up to $20,000 in annual copay assistance through a debit card she can use at the pharmacy. But now her health plan no longer credits those payments toward her deductible. It makes it almost impossible for her to meet the $25,000 out-of-pocket maximum under her plan.

“Primarily for this reason, I am no longer taking any medication,” Reitzel said, “and have to only hope my disease does not progress.”

Colorado legislators passed a bill to require health plans to count copay assistance programs toward patients’ deductibles for drugs with no generic equivalents, but that provision does not take effect until 2025.

Insulin as an Outlier?

Just a couple of years ago, insulin may have been a higher priority for drug affordability boards, but now it’s not so clear. Both Colorado and Maryland have established insulin copay caps that provide pocketbook relief, at least for patients with coverage. And manufacturers are making their own moves to lower insulin prices. That could prompt the boards to bypass insulin and concentrate their limited resources on other high-cost drugs.

Copay caps do not lower the actual cost of insulin but instead spread it among members of the health plan through higher premiums. The Colorado copay caps don’t help new state residents and initially did not help those without insurance, either. Both of those hurdles would have applied to Marquez-Farmer when she moved from California to Colorado Springs a couple of years ago.

“I got married to my husband during covid because I didn’t have insurance,” she said. “I loved him, and it all worked out, but a big reason for me to marry him was because I would not be able to afford insulin.”

Marquez-Farmer, 34, said that while insulin may not be the most expensive drug on the market, many Coloradans, particularly those from marginalized communities who have higher rates of diabetes, struggle to afford it.

“I’m not saying the other medicines are not important, because obviously they are,” she said. “The reality is there’s more people who are being affected by not being able to afford their insulin and a lot of people who are dying because of them rationing insulin.”

Andrew York, executive director of the Maryland board, said the payment limits should be viewed as a last resort, a tool that can be used when other cost-control measures haven’t worked.

“The goal is for folks to never be able to say that they can’t afford their insulin. And I think we may get there soon enough just because of how much is happening in that space,” he said. “So if that’s the case, then maybe boards don’t need to use the upper payment limit tool.”

At least one form of insulin was included on Colorado’s list of drugs eligible for review, but not the most commonly taken brand-name insulins. That precludes the Colorado board from addressing insulin costs more broadly.

The pharmaceutical industry has pushed back against the concept of payment limits, warning that drugmakers could pull out of states that set payment limits.

“The boards are acutely aware of this discussion point. The interest and the purpose of these boards is to increase access to the drugs, not decrease it,” York said. “But there’s kind of this game theory element of: How will manufacturers react?”

Reck discounted the notion that a payment limit would prompt a manufacturer to abandon a profitable market.

“Unfortunately, it’s kind of a scary message and it can be impactful on patients,” she said.

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

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

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

The impulse faded, but the pain remained.

He was lost.

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

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

Psychedelic mushrooms, he hoped, could change his life.

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

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

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

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

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

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

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

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

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

Now the use of psychedelic mushrooms is gaining traction in the United States. A 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 , 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 . In early trials, psychedelics have reached .

And unlike most prescribed medications, which stop working soon after patients quit taking them, one or two treatments of psilocybin can have 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.

, 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 , 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 , 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 , 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 , 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 that psilocybin plus therapy 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 , 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 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 ºÚÁϳԹÏÍø 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.]

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .