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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“Tengo un cirujano dispuesto a hacerlo; pero mis instalaciones no son lo bastante grandes”, dijo Stansbury. “Y en mi hospital no puedo hacer servicios urgentes como obstetricia porque mi instalación no cumple con el código”.

Además de asegurar ingresos adicionales para el hospital, una ampliación de este tipo podría evitar que los habitantes de la zona tengan que conducir 100 millas hasta Denver para someterse a operaciones ortopédicas o dar a luz.

Los hospitales rurales a lo largo del país se enfrentan a un dilema similar.

El aumento de los costos, en medio de reducciones de los pagos de las aseguradoras, dificulta que los pequeños hospitales obtengan financiación para grandes renovaciones. Además, la elevada inflación y el aumento de las tasas de interés, como consecuencia de la pandemia, complica la obtención de préstamos u otros tipos de financiación para modernizar las instalaciones y adaptarlas a los estándares de la atención médica en constante cambio.

“La mayoría trabajamos con márgenes muy bajos, si es que tenemos alguno”, afirmó Stansbury. “Así que nos cuesta encontrar el dinero”.

El envejecimiento de las infraestructuras hospitalarias, sobre todo en las zonas rurales, es un problema que va en aumento. Los datos sobre la edad de los hospitales son difíciles de conseguir, porque se amplían, modernizan y remodelan diferentes partes de sus instalaciones a lo largo del tiempo.

Un de la American Society for Health Care Engineering, que forma parte de la American Hospital Association, descubrió que la edad media de los hospitales en Estados Unidos aumentó de 8,6 años en 1994 a 11,5 años en 2015. Ese número probablemente ha crecido, según conocedores de la industria, ya que muchos hospitales retrasaron los proyectos de mejora, particularmente durante la pandemia.

Una por la empresa de planificación de capital , ahora llamada Brightly, reportó que los centros de salud estadounidenses habían aplazado un 41% de su mantenimiento y necesitarían $243,000 millones para ponerse al día.

Los hospitales rurales no disponen de los recursos de los grandes hospitales, sobre todo los que forman parte de cadenas hospitalarias, para financiar .

La mayoría de los hospitales rurales en funciones hoy se abrieron con fondos del , una ley aprobada por el Congreso en 1946. Este programa se integró en la Ley de Servicios de Salud Pública en la década de 1970 y, en 1997, había financiado la construcción de casi 7,000 hospitales y clínicas. Ahora, muchos de esos edificios, sobre todo los rurales, necesitan mejoras urgentes.

Stansbury, que también preside el consejo de administración de la señaló que al menos media docena de hospitales rurales del estado necesitan importantes inversiones de capital.

Harold Miller, presidente y CEO del , un think tank de Pittsburgh, afirmó que el principal problema de los pequeños hospitales rurales es que los seguros privados ya no cubren el costo total de la asistencia. Según Miller, Medicare Advantage, un programa por el que Medicare paga a planes privados para dar cobertura a personas mayores y discapacitadas, es uno de los principales responsables del problema.

“Básicamente, apartan a los pacientes de lo que puede ser el mejor pagador que tiene un pequeño hospital, y se los llevan a un plan privado, que no paga de la misma manera que Medicare tradicional y termina utilizando una variedad de técnicas para rechazar los reclamos”, explicó Miller.

Además, los hospitales rurales deben dotar sus servicios de urgencias de médicos las 24 horas del día, pero sólo cobran si hay pacientes.

Mientras tanto, los costos laborales desde el fin de la pandemia han aumentado, y la inflación ha disparado el precio de los suministros. Es probable que estas dificultades financieras obliguen a cerrar más hospitales rurales.

Los se redujeron durante la pandemia, de un récord de 18 cierres en 2020 a un total de ocho cierres en 2021 y 2022, según el Centro Cecil G. Sheps para la Investigación de Servicios de Salud de la Universidad de Carolina del Norte-Chapel Hill, porque los fondos de ayuda de emergencia los mantuvieron abiertos. Pero ese soporte vital ha terminado, y al menos nueve más cerraron en 2023. Según Miller, los cierres han vuelto a los niveles anteriores a la pandemia.

Esto hace temer que algunos hospitales inviertan en nuevas instalaciones y acaben cerrando de todos modos. Miller aseguró que sólo una pequeña parte de los hospitales rurales conseguiría una mejora significativa en sus finanzas agregando nuevos servicios.

Legisladores han intentado ayudar. California, por ejemplo, cuenta con programas de préstamos a bajo o ningún interés en los que pueden participar los hospitales rurales, y representantes de los hospitales le han pedido a los legisladores de Colorado que aprueben ayudas similares.

A nivel federal, la legisladora , demócrata de Colorado, ha presentado el proyecto de ley bipartidista , que ayudaría a los hospitales rurales a obtener más fondos a través del Departamento de Agricultura de Estados Unidos (USDA).

El USDA ha sido uno de los mayores financiadores del desarrollo rural a través de los , proporcionando más de $3 mil millones en préstamos al año. En 2019, la mitad de los más de $10 mil millones en préstamos pendientes a través del programa ayudaron a instalaciones de salud.

“De lo contrario, los centros tendrían que recurrir a prestamistas privados”, dijo Carrie Cochran-McClain, directora de la .

Los hospitales rurales pueden no resultar muy atractivos para los prestamistas privados debido a sus limitaciones financieras, y por lo tanto tendrían que pagar tasas de interés más altas o cumplir requisitos adicionales para obtener esos préstamos, agregó.

El proyecto de ley de Caraveo también permitiría a los hospitales, que ya tienen préstamos, refinanciarlos a tipos de interés más bajos, y cubriría más categorías de equipos médicos, como los utilizados para la telesalud.

“Tenemos que mantener estos centros abiertos, no sólo para urgencias, sino también para dar a luz o para una consulta de cardiología”, explicó Caraveo, que también es pediatra. “No deberías tener que conducir dos o tres horas para tener esos servicios”.

Kristin Juliar, consultora de recursos de capital de la , ha estudiado los retos a los que se enfrentan los hospitales rurales a la hora de pedir dinero prestado y planificar grandes proyectos.

“Intentan hacer esto mientras realizan su trabajo habitual dirigiendo un hospital”, dijo Juliar. “Por ejemplo, muchas veces, cuando surgen oportunidades de financiación, la agenda puede ser demasiado ajustada para que puedan desarrollar un proyecto”.

Parte de la financiación depende de que el hospital consiga fondos de contrapartida, lo que puede resultar difícil en comunidades rurales de bajos recursos. Y la mayoría de los proyectos exigen que los hospitales reúnan fondos de varias fuentes, lo que suma complejidad.

Y como la elaboración de estos proyectos suele llevar mucho tiempo, los CEO o los miembros del consejo de administración de los hospitales rurales a veces dejan el cargo antes de que se finalicen.

“Te pones manos a la obra y luego desaparecen personas clave, y entonces te sientes como si empezaras de nuevo”, explicó Juliar.

El hospital de Hugo abrió sus puertas en 1959, por iniciativa de los soldados que regresaban de la Segunda Guerra Mundial al condado de Lincoln, en las llanuras del este de Colorado. Donaron dinero, materiales, terrenos y mano de obra para construirlo. El hospital ha agregado cuatro clínicas de medicina familiar, un centro de enfermería especializada y un centro de vida asistida fuera de las instalaciones. Y atrae a especialistas de Denver y Colorado Springs.

A Stansbury le gustaría construir un nuevo hospital de aproximadamente el doble de tamaño que el actual, de 45,000 pies cuadrados. Dado que la inflación está bajando y es probable que las tasas de interés bajen este año, Stansbury espera conseguir financiación en 2024 y empezar a construir en 2025.

“El problema es que cada día que me despierto es más caro”, afirmó Stansbury.

Cuando autoridades del hospital se plantearon por primera vez la construcción de un nuevo hospital hace tres años, calcularon que el costo total del proyecto rondaría los $65 millones. Pero la inflación se disparó y ahora han subido las tasas de interés, lo que ha elevado el costo total a $75 millones.

“Si tenemos que esperar un par de años más, puede que nos acerquemos a los $80 millones”, señaló Stansbury. “Pero tenemos que hacerlo. No puedo esperar cinco años y pensar que los costos de construcción van a bajar”.

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“I’ve got a surgeon that’s willing to do it. My facility isn’t big enough,” Stansbury said. “And urgent services like obstetrics I can’t do in my hospital, because my facility won’t meet code.”

Besides securing additional revenue for the hospital, such an expansion could keep locals from having to drive the 100 miles to Denver for orthopedic surgeries or to deliver babies.

Rural hospitals throughout the nation are facing a similar conundrum. An increase in costs amid lower payments from insurance plans makes it harder for small hospitals to fund large capital improvement projects. And high inflation and rising interest rates coming out of the pandemic are making it tougher for aging facilities to qualify for loans or other types of financing to upgrade their facilities to meet the ever-changing standards of medical care.

“Most of us are operating at very low margins, if any margin at all,” Stansbury said. “So, we’re struggling to find the money.”

Aging hospital infrastructure, particularly in rural areas, is a growing concern. Data on the age of hospitals is hard to come by, because hospitals expand, upgrade, and refurbish different parts of their facilities over time. A by the American Society for Health Care Engineering, a part of the American Hospital Association, found that the average age of hospitals in the U.S. increased from 8.6 years in 1994 to 11.5 years in 2015. That number has likely grown, industry insiders say, as many hospitals delayed capital improvement projects, particularly during the pandemic.

Research by the capital planning firm , now called Brightly, found that U.S. health care facilities had deferred about 41% of their maintenance and would need $243 billion to complete the backlog.

Rural hospitals don’t have the resources of larger hospitals, particularly those in hospital chains, to fund .

Most of today’s rural hospitals were opened with funding from the , passed by Congress in 1946. That program was rolled into the Public Health Service Act in the 1970s and, by 1997, had funded the construction of nearly 7,000 hospitals and clinics. Now, many of those buildings, particularly those in rural areas, are in dire need of improvements.

Stansbury, who is also board chair of the , said at least a half-dozen rural hospitals in the state need significant capital investment.

Harold Miller, president and CEO of the , a think tank in Pittsburgh, said the major problem for small rural hospitals is that private insurance is no longer covering the full cost of providing care. Medicare Advantage, a program under which Medicare pays private plans to provide coverage for seniors and people with disabilities, is a major contributor to the problem, he said.

“You’re basically taking patients away from what may be the best payer that the small hospital has, and pushing those patients onto a private insurance plan, which doesn’t pay the same way that traditional Medicare pays and ends up also using a variety of techniques to deny claims,” Miller said.

Rural hospitals also must staff their emergency rooms with physicians round-the-clock, but the hospitals get paid only if someone comes in.

Meanwhile, labor costs coming out of the pandemic have increased, and inflation has driven up the cost of supplies. Those financial headwinds will likely push more rural hospitals out of business. dropped during the pandemic, from a record 18 closures in 2020 to a combined eight closures in 2021 and 2022, according to the Cecil G. Sheps Center for Health Services Research at the University of North Carolina-Chapel Hill, as emergency relief funds kept them open. But that life support has ended, and at least nine more closed in 2023. Miller said closures are reverting to pre-pandemic rates.

That raises concerns that some hospitals might invest in new facilities and end up shutting down anyway. Miller said only a small portion of rural hospitals might be able to make a meaningful difference to their bottom lines by adding new services.

Lawmakers have tried to help. California, for example, has loan programs charging low to no interest that rural hospitals can participate in, and hospital representatives are urging Colorado legislators to approve similar support.

At the federal level, Rep. , a Colorado Democrat, has introduced the bipartisan , which would help rural hospitals get more funding for capital projects through the U.S. Department of Agriculture. The USDA has been one of the largest funders of rural development through its , providing over $3 billion in loans a year. In 2019, half of the more than $10 billion in outstanding loans through the program helped health care facilities.

“Otherwise, facilities would have to go to private lenders,” said Carrie Cochran-McClain, chief policy officer for the .

Rural hospitals might not be very attractive to private lenders because of their financial constraints, and thus may have to pay higher interest rates or meet additional requirements to get those loans, she said.

Caraveo’s bill would also allow hospitals that already have loans to refinance at lower interest rates, and would cover more categories of medical equipment, such as used for telehealth.

“We need to keep these places open, even not just for emergencies, but to deliver babies, to have your cardiology appointment,” said Caraveo, who is also a pediatrician. “You shouldn’t have to drive two, three hours to get it.”

Kristin Juliar, a capital resources consultant for the , has been studying the challenges rural hospitals face in borrowing money and planning big projects.

“They’re trying to do this while they’re doing their regular jobs running a hospital,” Juliar said. “A lot of times when there are funding opportunities, for example, the timing may be just too tight for them to put together a project.”

Some funding is contingent on the hospital raising matching funds, which may be difficult in distressed rural communities. And most projects require hospitals to cobble together funding from multiple sources, adding complexity. And since these projects often take a long time to put together, rural hospital CEOs or board members sometimes leave before they come to fruition.

“You get going at something and then key people disappear, and then you feel like you’re starting all over again,” she said.

The hospital in Hugo opened in 1959 after soldiers coming back from World War II decided that Lincoln County on the eastern Colorado plains needed a hospital. They donated money, materials, land, and labor to build it. The hospital has added four family practice clinics, an attached skilled nursing facility, and an off-site assisted living center. It brings in specialists from Denver and Colorado Springs.

Stansbury would like to build a new hospital roughly double the size of the current 45,000-square-foot facility. With inflation easing and interest rates likely to go down this year, Stansbury hopes to get financing lined up in 2024 and to break ground in 2025.

“The problem is, every day I wake up, it gets more expensive,” Stansbury said.

When hospital officials first contemplated building a new hospital three years ago, they estimated a total project cost of about $65 million. But inflation skyrocketed and now interest rates have gone up, pushing the total cost to $75 million.

“If we have to wait another couple of years, we may be pushing up closer to $80 million,” Stansbury said. “But we’ve got to do it. I can’t wait five years and think the costs of construction are going to go down.”

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Related Links

• Police Blame Some Deaths on ‘Excited Delirium.’ ER Docs Consider Pulling the Plug on the Term. Oct 2, 2023
• California Bans Controversial ‘Excited Delirium’ Diagnosis Oct 12, 2023
• Doctors Abandon a Diagnosis Used to Justify Police Custody Deaths. It Might Live On, Anyway. Oct 16, 2023

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.Ìý

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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So how can the country afford the latest and greatest in medicine? One possibility: Stop paying billions of dollars a year for stuff that doesn’t help patients and might even harm them. As much as 30 percent of the $3 trillion we spend on health care annually goes to such low-value care, as I reported in this story.

Some examples: Doctors continue to prescribe unneeded opiates or antipsychotics, routinely screen for vitamin D deficiency, and order cancer-screening tests late in life when they are unlikely to provide much benefit. Treatments like those raise costs, lead to health complications and interfere with the delivery of more appropriate care.

But the fee-for-service health system in the United States rewards doctors for providing more care rather than the right care, and that has made it maddeningly difficult to stop such waste. And even when doctors have no financial incentives to order additional tests or services, low-value care is hard to stamp out.

A in Colorado, for example, found that patients and private and public payers in the state spent $134 million on unnecessary care in 2021. And despite a more than decade-long campaign called to identify unnecessary services, spending on low-value care has barely budged.

In some places, defensive medicine plays a role, as doctors in highly litigious states order extra lab tests or imaging in fear of malpractice suits. And sometimes, low-value services just get ingrained in the culture and become almost impossible to eliminate.

As , director of the University of Michigan Center for Value-Based Insurance Design,put it, “There’s a culture of more is better. And ‘more is better’ is very hard to overcome.”

Some individual institutions have been able to reduce low-value care. Children’s Hospital Colorado slashed the number of abdominal CT scans in kids by having surgeons come to the emergency room and help estimate how likely they were to have appendicitis. And a Los Angeles safety-net health system operating on a fixed budget was able to eliminate before cataract surgeries. But these efforts are more the exception than the rule.

Fendrick has been beating the drum that eliminating low-value services is the only viable way to pay for all the advances in medicine, such as the new anti-obesity drugs like Wegovy. A provision in the Affordable Care Act already provides a means to do that. Buried deep in the law, (which Fendrick jokes only about eight people actually know about) gives the health and human services secretary authority to not cover any service to which the U.S. Preventive Services Task Force assigns a , meaning it offers little or no benefit and isn’t recommended.

Several years ago, at the request of then-House Democratic leadership staffers, Fendrick calculated that Medicare could save $5 billion over 10 years by not paying for the seven most common D-rated services. And that reflects only the services themselves, not the cascade of unnecessary care they often precipitate.

Spoiler alert: Medicare is still paying for them.

“You could cover insulin. You could buy a lot of obesity drugs,” Fendrick told me. “That’s not enough — maybe a month of obesity drugs — but you know what I mean.”

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The state — including the government, insurers, and patients themselves — spent $134 million last year on what is called low-value care, according to the report by the , a Denver nonprofit that collects billing data from health plans across Colorado. The top low-value items in terms of spending in each of the past three years were prescriptions for opiates, prescriptions for multiple antipsychotics, and screenings for vitamin D deficiency, according to the analysis.

Nationwide, those treatments raise costs, lead to health complications, and interfere with more appropriate care. But the structure of the U.S. health system, which rewards doctors for providing more care rather than the right care, has made it difficult to stop such waste. Even in places that have reduced or eliminated the financial incentive for additional testing, such as Los Angeles County, low-value care remains a problem.

And when patients are told by physicians or health plans that tests or treatments aren’t needed, they often question whether they are being denied care.

While some highly motivated clinicians have championed effective interventions at their own hospitals or clinics, those efforts have barely moved the needle on low-value care. Of the $3 trillion spent each year on health care in the U.S., 10% to 30% consists of this low-value care, according to multiple estimates.

“There’s a culture of ‘more is better,’” said , director of the University of Michigan Center for Value-Based Insurance Design. “And ‘more is better’ is very hard to overcome.”

To conduct its study, the Center for Improving Value in Health Care used a calculator developed by Fendrick and others that quantifies spending for services identified as low-value care by the campaign, a collaborative effort of the American Board of Internal Medicine Foundation and now more than 80 medical specialty societies.

Fendrick said the $134 million tallied in the report represents just “a small piece of the universe of no- and low-value care” in Colorado. The calculator tracks only the 58 services that developers were most confident reflected low-value care and does not include the costs of the cascade of care that often follows. Every dollar spent on prostate cancer testing in men over 70, for example, results in $6 in follow-up tests and treatments, published in JAMA Network Open in 2022.

In 2013, Children’s Hospital Colorado learned it had the second-highest rate of CT abdominal scans — a low-value service — among U.S. children’s hospitals, with about 45% of kids coming to the emergency room with abdominal pain getting the imaging. Research had shown that those scans were not helpful in most cases and exposed the children to unnecessary radiation.

Digging into the problem, clinicians there found that if ER physicians could not find the appendix on an ultrasound, they swiftly ordered a CT scan.

New protocols implemented in 2016 have surgeons come to the ER to evaluate the patient before a CT scan is ordered. The surgeons and emergency doctors can then decide whether the child is at high risk of appendicitis and needs to be admitted, or at low risk and can be sent home. Within two years, the hospital cut its rate of CT scans on children with abdominal pain to 10%, with no increase in complications.

“One of the hardest things to do in this work is to align financial incentives,” said , an emergency physician at Children’s Colorado who championed the effort, “because in our health care system, we get paid for what we do.”

Cutting CT scans meant less revenue. But Children’s Colorado worked with an insurance plan to create an incentive program. If the hospital could hold down the rate of high-cost imaging, saving the health plan money, it could earn a bonus from the insurer at the end of the year that would partly offset the lost revenue.

But Bajaj said it’s tough for doctors to deal with patient expectations for testing or treatment. “It’s not a great feeling for a parent to come in and I tell them how to support their child through the illness,” Bajaj said. “They don’t really feel like they got testing done. ‘Did they really evaluate my child?’”

That was a major hurdle in treating kids with bronchiolitis. That respiratory condition, most often caused by a virus, sends thousands of kids every winter to the ER at Children’s, where unneeded chest X-rays were often ordered.

“The data was telling us that they really didn’t provide any change in care,” Bajaj said. “What they did was add unnecessary expense.”

Too often, doctors reading the X-rays mistakenly thought they saw a bacterial infection and prescribed antibiotics. They would also prescribe bronchodilators, like albuterol, they thought would help the kids breathe easier. But studies have shown those medicines don’t relieve bronchiolitis.

Bajaj and his colleagues implemented new protocols in 2015 to educate parents on the condition, how to manage symptoms until kids get better, and why imaging or medication is unlikely to help.

“These are hard concepts for folks,” Bajaj said. Parents want to feel their child has been fully evaluated when they come to the ER, especially since they are often footing more of the bill.

The hospital reduced its X-ray rate from 40% in the 17 months before the new protocols to 29% in the 17 months after implementation, according to Bajaj. The use of bronchodilators dropped from 36% to 22%.

Part of the secret of Children’s success is that they “brand” their interventions. The hospital’s quality improvement team gathers staff members from various disciplines to brainstorm ways to reduce low-value care and assign a catchy slogan to the effort: “Image gently” for appendicitis or “Rest is best” for bronchiolitis.

“And then we get T-shirts made. We get mouse pads and water bottles made,” Bajaj said. “People really do enjoy T-shirts.”

In California, the Los Angeles County Department of Health Services, one of the largest safety-net health systems in the country, typically receives a fixed dollar amount for each person it covers regardless of how many services it provides. But the staff found that 90% of patients undergoing cataract surgery were getting extensive preoperative testing, a low-value service. In other health systems, that would normally reflect a do-more-to-get-paid-more scenario.

“That wasn’t the case here in LA County. Doctors didn’t make more money,” said , an associate professor of medicine at UCLA. “It suggests that there’s many other factors other than finances that can be in play.”

As quality improvement staffers at the county health system looked into the reasons, they found the system had instituted a protocol requiring an X-ray, electrocardiograms, and a full set of laboratory tests before the surgery. A records review showed those extra tests weren’t identifying problems that would interfere with an operation, but they did often lead to unnecessary follow-up visits. An anomaly on an EKG might lead to a referral to a cardiologist, and since there was often a backlog of patients waiting for cardiology visits, the surgery could be delayed for months.

In response, the health system developed new guidelines for preoperative screenings and relied on a nurse trained in quality improvement to advise surgeons when preoperative testing was warranted. The initiative drove down the rates of chest X-rays, EKGs, and lab tests by two-thirds, with no increase in adverse events.

lost money in its first year because of high startup costs. But over three years, it resulted in modest savings of about $60,000.

“A fee-for-service-driven health system where they make more money if they order more tests, they would have lost money,” Mafi said, because they make a profit on each test.

Even though the savings were minimal, patients got needed surgeries faster and did not face a further cascade of unnecessary testing and treatment.

Fendrick said some hospitals make more money providing all those tests in preparation for cataract surgery than they do from the surgeries themselves.

“These are older people. They get EKGs, they get chest X-rays, and they get bloodwork,” he said. “Some people need those things, but many don’t.”

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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. Â鶹ŮÓÅ Health 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 Â鶹ŮÓÅ Health 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.

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“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 Â鶹ŮÓÅ Health 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.

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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 Â鶹ŮÓÅ Health 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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