• Read Anthony’s “A Surgical Team Was About To Harvest This Man’s Organs — Until His Doctor Intervened.”

Â鶹ŮÓÅ Health News senior correspondent Julie Appleby discussed the changing availability of Affordable Care Act plans on Wisconsin Public Radio’s “Wisconsin Today” on Sept. 19.

Â鶹ŮÓÅ Health News senior correspondent Renuka Rayasam discussed federal changes to Medicaid funding on WUGA’s “The Georgia Health Report” on Sept. 19.

• Read Sam Whitehead and Rayasam’s “Projected Surge in Uninsured Will Strain Local Health Systems.”

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Rovner also delved into the “Make America Healthy Again” report on children’s health on WNYC’s “The Brian Lehrer Show” on Sept. 16 and on C-SPAN’s “Washington Journal” on Sept. 12. During that C-SPAN appearance, she also covered the debate over extending the Affordable Care Act subsidies.

Â鶹ŮÓÅ Health News Midwest correspondent Cara Anthony discussed Larry Black Jr., a young man whose organs were nearly harvested before a surgeon intervened, on KMOX’s “Total Information AM” on Sept. 17.

• Read Anthony’s “A Surgical Team Was About To Harvest This Man’s Organs — Until His Doctor Intervened.”

Â鶹ŮÓÅ Health News correspondent Rachana Pradhan discussed the upheaval at the National Cancer Institute under the Trump administration on WAMU’s “1A” on Sept. 17.

• Read Pradhan’s “World’s Premier Cancer Institute Faces Crippling Cuts and Chaos,” with reporting from Arthur Allen.

Â鶹ŮÓÅ Health News senior correspondent Arthur Allen discussed the FDA’s move away from expert reviews of new drugs on CBS News’ “CBS News 24/7” on Sept 15.

• Read Allen’s “Under Trump, FDA Seeks To Abandon Expert Reviews of New Drugs.”

Â鶹ŮÓÅ Health News senior health policy correspondent Stephanie Armour discussed the impact of federal health care funding cuts on states on PBS NewsHour on Sept. 13.

• Read Armour’s “In the Fallout From Trump’s Health Funding Cuts, States Face Tough Budget Decisions,” with reporting from Christine Mai-Duc, Sam Whitehead, and Arielle Zionts.

Â鶹ŮÓÅ Health News Southern correspondent Sam Whitehead discussed the September meeting of the Advisory Committee on Immunization Practices on WUGA’s “The Georgia Health Report” on Sept. 12.

• Read Jackie Fortiér’s “RFK Jr.’s Vaccine Panel Expected To Recommend Delaying Hepatitis B Shot for Children.”

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“Get him off the table,” the doctor recalled telling the surgical team at SSM Health Saint Louis University Hospital as the team cleaned Black’s chest and abdomen. “This is my patient. Get him off the table.”

At first, no one recognized Zohny Zohny in his surgical mask. Then he told the surgical team he was the neurosurgeon assigned to Black’s case. Stunned by his orders, the team members pushed back, Zohny said, explaining that they had consent from the family to remove Black’s organs.  

“I don’t care if we have consent,” Zohny recalled telling them. “I haven’t spoken to the family, and I don’t agree with this. Get him off the table.”

Black, his 22-year-old patient, had arrived at the hospital after getting shot in the head on March 24, 2019. A week later, he was taken to surgery to have his organs removed for donation — even though his heart was beating and he hadn’t been declared brain-dead, Zohny said.

Black’s sister Molly Watts said the family had doubts after agreeing to donate Black’s organs but felt unheard until the 34-year-old doctor, in his first year as a neurosurgeon, intervened.

Today, Black, now 28, is a musician and the father of three children. He still needs regular physical therapy for lingering health issues from the gun injury. And Black said he is haunted by what he remembers from those days while he was lying in a medically induced coma.

“I heard my mama yelling,” he recalled. “Everybody was there yelling my name, crying, playing my favorite songs, sending prayers up.”

He said he had tried to show everyone in his hospital room that he heard them. He recalled knocking on the side of the bed, blinking his eyes, trying to show that he was fighting for his life.

Organ transplants save a growing number of lives in the U.S. every year, with performed in 2024, according to the Organ Procurement and Transplantation Network, which oversees the nation’s transplant system. And awaiting donations that never come.

But organ donation has also faced ongoing , including reports of patients showing alertness before planned organ harvesting. The results of a into a Kentucky organ donation nonprofit, first disclosed by in June, found that during a four-year period, medical providers had planned to harvest the organs of 73 patients despite signs of neurological activity. Those procedures ultimately didn’t take place, but federal officials to overhaul the nation’s organ donation system.

“Our findings show that hospitals allowed the organ procurement process to begin when patients showed signs of life, and this is horrifying,” Health and Human Services Secretary Robert F. Kennedy Jr. said in a statement. “The entire system must be fixed to ensure that every potential donor’s life is treated with the sanctity it deserves.”

Even before this latest investigation, Black’s case showed Zohny that the organ donation system needed to improve. He was initially hesitant to talk to Â鶹ŮÓÅ Health News when contacted in July about Black. But Zohny said his patient’s story had stuck with him for years, highlighting that while organ donation must continue, little is understood about human consciousness. And determining when someone is dead is the critical but confusing question at play.

“There was no bad guy in this. It was a bad setup. There’s a problem in the system,” he said. “We need to look at the policies and make some adjustments to them to make sure that we’re doing organ donation for the right person at the right time in the right place, with the right specialists involved.”

LJ Punch, a former trauma surgeon who was not involved with the case but reviewed Black’s medical records for Â鶹ŮÓÅ Health News, questioned whether Black’s injury — from gunfire — possibly contributed to how he was treated. Young Black men like Larry Black are in the United States, and research on such violence is scant. His experience exemplifies “the general neglect” of Black men’s bodies, Punch said.

“That’s what comes up for me,” Punch said. “Structurally, not individually. Not any one doctor, not any one nurse, not any one team. It’s a structural reality.”

The hospital declined to comment on the details of Black’s case. SSM Health’s Kim Henrichsen, president of Saint Louis University Hospital and St. Mary’s Hospital-St. Louis, said the hospital system approaches “all situations involving critical illness or end-of-life care with deep compassion and respect.”

Mid-America Transplant, the federally designated organ procurement organization serving the St. Louis region, does not comment on individual donor cases, according to , executive vice president for organ procurement. She did tell Â鶹ŮÓÅ Health News that her organization has walked away from cases when patients’ conditions change — though not as late as when they are in the operating room for harvesting.

“Let me be clear about that. It happens way before then,” she said. “It definitely happens multiple times a year where we get consent. The family has made the decision, we approach, we get consent, it’s all appropriate, and then a day or so later they improve and we’re like, ‘Whoa.’”

But Speir said the recent media stories about the nation’s donation system are prompting a lot of questions about a process that also does a lot of good.

“We’re losing public trust right now,” Speir said of the industry. “And we’re going to have to regain that.”

Blink Twice for a Chance at Life

It was a Sunday afternoon when gunshots rang out in downtown St. Louis. Black had been on his way to his sister’s apartment.

“I didn’t know I was shot at first,” Black said, sitting in his living room six years later. “I literally ran like a block or two away.”

He collapsed moments later, he said, crawling to the back door of a woman’s home, where he asked for help. He said he asked the woman to give him two large towels, one covered in rubbing alcohol and another soaked with hydrogen peroxide. He wrapped those towels around the back of his head.

When his sister Macquel Payne found him, he was lying on the ground near the leasing office of her apartment complex, a crowd gathered around him.

Before an ambulance took him to the hospital, Black told his sister not to worry about him.

“I’m hearing Larry say, ‘I’m good, sis,’” Payne recalled. “‘I’m OK.’”

Black said he went in and out of consciousness on the way to the hospital and once he was there.

“I got to hitting my hand on the side of the ICU bed,” Black said. “They was like: ‘That’s just the reaction, the side effects of the medicine. Ask him some questions.’”

Payne said she asked her brother to blink twice if he could remember his first pet, a dog named “Little Black” that looked like the Chihuahua from the Taco Bell commercials.

Black said he remembers blinking twice. His sisters remember the same.

Payne asked him another question. This time she wanted to know whether her brother recognized their family. Black said he blinked twice when he saw his mom and sister standing nearby.  

Black said his sister then asked him “the main question” that everyone needed him to answer.

“She’s like, ‘If you want them to pull a plug, if you tired and you giving up, blink once,’” Black recalled. “‘If you still got some fight in you, blink more than once.’”

Black said he started blinking and hit the bed to let his family know that he was still with them.

The sisters said hospital staffers told them the movements were involuntary.

‘Not Right Now’

In a waiting room steps away from the hospital’s intensive care unit, a woman carrying brochures explained to Payne and the rest of the family that Black had identified himself as a possible organ donor on his ID.

The woman wanted to know whether the family wished to move forward with the process if Black died, Payne said.

“I remember my mom saying, ‘Not right now,’” Black’s sister recalled. “‘It’s kind of too soon.’”

Payne said the woman persisted.

“She was like, ‘Well, can I at least leave you some brochures or something?’” Payne recalled. “Then my mom got a little agitated because it felt like she was being, like, pushy.”

The family was already acquainted with the organ donation process. In 2007, Black’s teenage brother Miguel Payne drowned at a local lake. His organs were donated, Macquel Payne said, noting the family was told that his body parts and tissues helped multiple people.

“I believe in saving lives,” Payne said. “But don’t be pushy about it.”

Mid-America Transplant handles the organ transplant process for 84 counties in parts of Illinois, Arkansas, and Missouri, including St. Louis. Like the Kentucky organization, it is one of 55 federally designated nonprofits that facilitate organ donations throughout the country.

The nonprofit has never pressured a family into organ donation, Speir said. Registering to be an organ donor is legally binding, she said, but Mid-America has walked away from cases when families didn’t want to move forward.

She said her staff tries to dispel myths about organ donation and alleviate concerns. “We want to have the families leave with a positive experience,” Speir said.

Despite the family’s initial ambivalence, they ultimately consented to moving forward with donating Black’s organs. Watts said members of her brother’s care team had told the family that her brother was at “the end of the road.”

The family was told to prepare for Black’s “last walk of life,” Payne said. Also known as an honor or hero’s walk, the tradition honors the life of an organ donor before the harvesting process begins.

At the time, Payne said, she thought her brother still had a fighting chance. She asked the hospital staffers to take another look at him before he was wheeled down the hall.

“I’m like, ‘My brother’s in there tapping on the bed,’” Payne said. “They said, ‘That’s just his nerves.’ But I’m like, ‘No, something’s not right.’ It’s like he was too alert. He was letting us know: ‘Please don’t let them do this to me. I’m here. I can fight this.’ They were saying that’s what the medicine will do, it affects his nerves.”

After the family had agreed to move forward with the organ donation process, the two sisters said, an especially helpful member of Black’s medical team no longer treated them the same way. She became standoffish, they said.

“You could tell the dynamics had changed,” Watts said.

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The family put on blue jumpers for the walk of life. “We just walked around the floor, and everybody was, like, acknowledging him,” Payne said. “We just thought this was the end.”

A friend Black went to high school with filmed part of the ritual. In a , Black is seen being wheeled on a stretcher down a hallway in the hospital. His eyes are half-open. People are crying.

False rumors then started to swirl outside the hospital.

Brianna Floyd said she went into shock when she heard that her friend was dead. She knew that Black had been shot in the head. But a few days earlier, that he was in stable condition.

Floyd checked Facebook to see whether the news of his death was true. Her timeline was flooded with farewell posts for Black, so she decided to write one, too.

“I Love You So Much Brother,” . “#RIPMyBrother. Never Thought I Would Say That.”

Black’s father rushed to the hospital when he heard a rumor that his son was being wheeled to the morgue.

“‘He’s gone,’” Lawrence Black Sr. recalled being told. “‘He’s going to the freezer now.’”

Black Sr. said he refused to believe that his son was dead. The thought was devastating. He had already experienced that kind of loss to gun violence.

“You wake up and nothing’s the same,” Black Sr. said. “The spirit is lingering for about a week, and you can feel it, you know?”

Overwhelmed with emotion, he prayed for his son to live.

‘I Can’t Kill Your Son’

Zohny, the neurosurgeon, said he heard an announcement about a “hero’s walk” over a loudspeaker in the hospital. He wasn’t familiar with the term, so he asked about it. Medical residents in the hospital explained and told Zohny that the walk was possibly for his patient Larry Black.

“No, that can’t be my patient,” Zohny said he told them. “I didn’t agree.”

That’s when Zohny called the ICU to check on Black’s status. A person who answered the phone told him that Black was being wheeled to an operating room, he said.

“This is my first year,” Zohny said. “Your first year out as a neurosurgeon is the riskiest time for you. Any mistakes, anything small, basically derails your career. So the moment this happened, my legs went weak and I was very nervous because, at the end of the day, your job as a doctor is to be perfect.”

Â鶹ŮÓÅ Health News, Zohny, and Punch all reviewed the medical files given to Black from his hospitalization. It’s not clear from the records what led to that moment.

“In every case, the patient must be declared legally dead by the hospital’s medical team before organ procurement begins. This is not negotiable,” Mid-America Transplant’s CEO and president, Kevin Lee, wrote in on the nonprofit’s website, responding to the news and federal comments about the investigation centered in Kentucky. “Mid-America Transplant strictly follows all laws, regulations, and hospital protocols throughout the process.”

He said in a statement to Â鶹ŮÓÅ Health News that a person can be pronounced dead in two ways. A person is legally dead if their heart stops beating and they stop breathing, which is when donation after cardiac death can occur. A person can also become an organ donor if their brain, including the brain stem, has irreversibly ceased functioning, which is when brain death donation can occur.

“Every hospital has their own process in declaring both types of death,” Speir said in a statement. “Mid-America Transplant ensures hospitals follow their policies.”

But Black didn’t fall into either category, Zohny said. And, he said, Black hadn’t had what is known as a brain death exam.

Zohny said he immediately informed his chairman about the situation, then started running to the operating room. Black’s family was waiting in the hallway, unaware of the drama happening behind a set of closed silver doors.

Then Zohny emerged, pulling Black’s family into an empty operating room that was nearby.

“I remember he told my mama, ‘I can’t kill your son,’” Payne recalled. “She said, ‘Excuse me?’”

Zohny put an image of Black’s brain on a screen. Then he circled the part of his brain that was damaged. He explained that Black’s gunshot wound was something that he could possibly recover from, though he might need therapy. He asked the family whether they were willing to give Black more time to heal from the injury, instead of withdrawing care.

“In my opinion, no family would ever consent to organ donation unless they were given an impression that their family member had a very poor prognosis,” Zohny said. “I never had a conversation with the family about the prognosis, because it was too early to have that discussion.”

Zohny knew that he was taking a professional risk when he ran into the operating room.

“The worst-case scenario for me is that I lose my job,” he recalled thinking. “Worst-case scenario for him, he wrongfully loses his life.”

Later, Zohny said, a hospital worker who transported Black from the ICU to the operating room told Zohny that something had seemed off.

 “I remember him looking at me and saying, ‘I’m so glad you stopped that,’” Zohny recalled. “And I said, ‘Why?’ And he said: ‘I don’t know. His eyes were open the whole time, and I just felt like he was looking at me. His eyes didn’t move, but it felt like he was looking at me.’”

‘Back From the Dead’

After Zohny’s intervention, Black was wheeled back to the ICU. Zohny said the medical team held back all medications that caused his sedation.

Black woke up two days later, Zohny said, and started speaking. Within a week, the neurosurgeon said, he was standing.

“I had to learn how to walk, how to spell, read,” Black said. “I had to learn my name again, my Social, birthday, everything.”

Zohny continued to care for Black during what remained of his 21 days in the hospital. During a follow-up appointment, he posed for a photo with Black and his older sister, Watts. Next to Zohny, Black is standing up, a brace on his leg.

“It’s a miracle that despite flawed policy we were able to save his life,” Zohny said. “It was an absolute miracle.”

Zohny, who was working as a fellow and assistant professor at the time, left Saint Louis University Hospital for another job later that year when his fellowship ended. He said Black’s story made him question what we know about consciousness.

He’s now working on a new method that quantifies consciousness. Zohny said it could possibly be used to help measure consciousness from brain signals, such as with an electroencephalogram, or EEG, a test that measures electrical activity in the brain. Zohny said his method still needs rigorous validation, so he recently started a medical research company called Zeta Analytica, separate from his work at the West Virginia University , which he’ll begin in October.

“We don’t understand the brain to the level that we should, especially with all of the technology we have now,” Zohny said.

Today, Black is trying to move forward. He said he has seizures if the bullet fragments in his head move around too much. He said he easily overheats because of the injury.

He doesn’t blame his family for their decision. But he questions the organ transplantation process. “It’s like they choose people’s destiny for them just because they have an organ donor ribbon on their ID,” Black said. “And that’s not cool.”

To help him process everything that happened to him in 2019, he makes music under the name BeamNavyLooney. “I am back from the dead,” he recently wrote in a song about his experience.

Earlier this year, Black celebrated the birth of another son, who was sleeping peacefully at home as Black recounted his story.

“He doesn’t really cry,” Black said. “He just makes noises.”

Black sat with a firearm within reach. He said he keeps the gun close to protect his family. It’s still hard for him to sleep at night. Nightmares about what happened — both on the street and in the hospital — keep him awake.

He said he no longer wants to be on the organ donor registry.

This project was supported by a fellowship from the Association of Health Care Journalists, with funding from The Joyce Foundation.

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Tucked into the hundreds of pages of legislative language to reauthorize the Federal Aviation Administration is a provision to change the life-or-death process by which human organs are flown commercially from donor to recipient.

But where on the plane organs are stowed during flights has been a long-standing issue for organ procurement organizations.

The sweeping measure, which is pending in Congress and , aims to change regulations and move organs to the cabin from an aircraft’s cargo hold. Organizations managing organ transport consider it an opportunity to from a system they say adds more hurdles to the task of shipping organs.

It used to be that a member of a transplant team could take a packaged organ to a plane’s gate and hand it off to the aircraft’s crew, in the cockpit or on the flight deck. This access “allowed us to really expedite the process,” said , president and CEO of , a nonprofit organ procurement organization in the state. But the terrorist attacks of 9/11 led to tighter security protocols, including a rule that permitted only people with tickets to go through Transportation Security Administration checkpoints.

“In our case, we don’t have a ticket,” said Casey Humphries, logistics service line leader of the , the nonprofit contracted by the federal government to manage the nation’s transplant system. “We’re not booked as a passenger on a plane,” she said. Instead, they’re part of the relay network bringing the organs to people in need. Airport employees who work behind security checkpoints have an airport badge and usually get in through a designated entrance.

Another consequence of the was that donor organs flown on commercial airplanes — which are mostly kidneys — were stashed in cargo spaces below the wing along with boxes and luggage, said Humphries.

But shipping organs as cargo requires they be at the airport for loading one to two hours before takeoff. “That’s a significant time before the wheels go up for the plane,” said Orlowski. And that variable — the “hours that the organ is going to just sit, going nowhere” — has to be factored into decisions about where it can be sent, he said. Donated organs can’t be treated like a golf bag or an Amazon box. They are delicate and have an imminent expiration date, which for kidneys is usually within 24 hours of surgical removal.

Since January 2022, around 80% of organs recovered in Oklahoma were sent to another state to be transplanted, Orlowski said. And of the organs LifeShare recovers, about 35% of them are flown commercially. Since kidneys can survive in a cooler longer than other organs, nearly all organs that travel on commercial flights are kidneys.

The first choice for transporting an organ, he said, is usually to drive it to its destination; it’s cheaper, and the transplant team can be more watchful.

But that’s not always an option, especially in rural areas. Orlowski said there are only two transplant centers within driving distance of LifeShare’s Oklahoma City base, in Dallas and Fort Worth, Texas. So his team relies on commercial airlines for transportation.

The current air travel security rules also cause geographic disparities, as fewer cargo-carrying planes fly in and out of smaller airports in rural areas, compared with airports in bigger cities.

“We need something that is available 24 hours a day because organs are available 24 hours a day,” Humphries said.

Charter planes can be a backup option, but one flight can cost organ procurement organizations thousands of dollars, whereas cargo shipping costs usually come in at less than $500 per flight, Orlowski said.

Although the security protocol has been in place for more than two decades, transplant advocates say this is the first time they have sought a legislative reversal, and they are optimistic about the outcome.

The provision to allow organs back in cabins is included in both the Senate and House versions of the reauthorization bill. Some hot-button parts of the bill, though, such as an increase in the mandatory retirement age for pilots, could stall progress. The House Transportation and Infrastructure Committee on June 14, and at press time it was being debated on the House floor. The Senate Committee on Commerce, Science and Transportation is expected to consider this month, according to Senate staffers.

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Ahora, su función renal está volviendo a fallar y enfrenta la posibilidad de un tercer trasplante. Pero el proceso para encontrar ese órgano salvador está plagado de problemas.

Aproximadamente mientras están en lista de espera, al mismo tiempo que órganos donados en perfecto estado acaban en la basura.

La agencia que supervisa las donaciones y los trasplantes está siendo investigada por el número de órganos que se desperdician. La Red Unida para el Intercambio de Órganos (UNOS, en inglés) recibió una reprimenda bipartidista en una reciente audiencia en el Congreso.

“Los pacientes, no estamos mirando eso”, dijo McCowan, refiriéndose a los debates políticos. “Estamos en plan: ‘Oye, necesito un riñón para mí. Lo necesito ahora. Estoy cansado de la diálisis. Siento que estoy a punto de morir'”.

El número de trasplantes de riñón un 16% gracias a una nueva política aplicada por UNOS que da prioridad a los pacientes más enfermos frente a los que viven más cerca de un centro de trasplantes. Aun así, casi 100,000 personas están a la espera de riñones y aún más de otros órganos.

Una de la Comisión de Finanzas del Senado descubrió numerosos incidentes que antes no se habían hecho públicos. Algunos ejemplos:

• Charleston, Carolina del Sur: En noviembre de 2018, un paciente murió tras recibir un órgano con el tipo de sangre equivocado.
• Las Vegas: En julio de 2017, dos receptores de riñón contrajeron una rara infección. Uno murió días después.
• Kettering, Ohio: En junio de 2020, un receptor de un trasplante fue informado de que había recibido accidentalmente un órgano de un donante con cáncer y que probablemente desarrollaría un cáncer.

UNOS ha tenido el contrato para gestionar la distribución de órganos desde el inicio del sistema nacional de trasplantes en 1984, y ahora los senadores estadounidenses —tanto demócratas como republicanos— se preguntan si ha llegado el momento de que otra entidad intervenga.

“El sistema de trasplantes de órganos se ha convertido en un peligroso caos”, dijo la senadora Elizabeth Warren (demócrata de Massachusetts) durante la . “Ahora mismo, UNOS tiene 15 veces más probabilidades de perder o dañar un órgano en tránsito que una compañía aérea de perder o dañar tu equipaje. Es un récord bastante terrible”.

La investigación culpa a la tecnología vetusta. El sistema informático de UNOS ha estado dejando de funcionar por una hora o más, retrasando la búsqueda de órganos compatibles cuando cada hora cuenta. Tampoco hay una forma estándar de rastrear un órgano, a pesar de que empresas como Amazon pueden localizar cualquier paquete, en cualquier lugar y en cualquier momento.

“Ni siquiera puedo conseguir un riñón que esté a 20 millas de mi centro de trasplantes, si UNOS cree que está en Miami”, dijo Barry Friedman, director ejecutivo del centro de trasplantes de AdventHealth en Orlando, Florida. “En realidad estaba en Orlando, a 20 millas de distancia”.

En la década de 2010 a 2020, el informe del Congreso encontró que UNOS recibió 53 quejas sobre el transporte, incluidos numerosos vuelos perdidos que condujeron a trasplantes cancelados y órganos desechados.

El informe también citó una investigación de KHN de 2020 que descubrió muchos más incidentes: casi 170 fallas en el transporte de 2014 a 2019. Incluso cuando los órganos llegan, los cirujanos de trasplantes dicen que la falta de seguimiento conduce a períodos más largos de “tiempo frío” —cuando los órganos están en tránsito— porque los cirujanos de trasplantes a menudo no pueden comenzar a anestesiar a un paciente hasta que el órgano esté físicamente a mano.

, uno de cada cuatro riñones potenciales se desperdicia. Y esa cifra ha empeorado a medida que los órganos viajan más lejos para llegar a los pacientes más enfermos bajo la nueva política de asignación.

En la Universidad de Alabama-Birmingham, un riñón llegó congelado e inservible en 2014, dijo la doctora Jayme Locke, que dirige el programa de trasplantes. En 2017, un paquete llegó “aplastado” con aparentes marcas de neumáticos (aunque, notablemente, el órgano fue rescatado).

Y en una semana en mayo de este año, dijo Locke, cuatro riñones tuvieron que ser desechados por errores evitables en el transporte y la manipulación.

“La falta de transparencia de UNOS hace que no tengamos ni idea de la frecuencia con la que se producen errores básicos en todo el país”, dijo.

El director general de UNOS, , ha anunciado que a finales de septiembre. Defiende el desempeño de la organización que ha dirigido durante una década, señalando que se ha registrado un aumento de la tasa de trasplantes.

La nueva política de asignación de riñones, que fue desafiada en los tribunales, es en parte responsable de ese aumento de la tasa de trasplantes. La política también ha contribuido a mejorar la equidad, al aumentar los trasplantes de pacientes de raza negra en un 23%. Estos pacientes, a sufrir insuficiencia renal, han tenido dificultades para entrar en las listas de trasplantes.

“Aunque hay cosas que podemos mejorar, y lo hacemos cada día, creo que es una organización fuerte que ha prestado un buen servicio a los pacientes”, dijo Shepard.

, publicado este año, concluye que la culpa debe repartirse entre los centros de trasplante de los hospitales y las organizaciones locales que obtienen los órganos de los donantes.

Las tres entidades trabajan juntas, pero tienden a culparse las unas a las otras cuando la gente empieza a preguntarse por qué siguen muriendo tantos pacientes en la espera de órganos.

“[UNOS] no es la única causa de los problemas de eficacia del sistema”, afirma Renée Landers, profesora de Derecho que dirige la concentración biomédica de la Universidad de Suffolk, en Boston. Landers formó parte del comité que ayudó a elaborar el informe más amplio. “Todo el mundo tenía trabajo por hacer”.

Los recientes informes de vigilancia, así como varias sobre los mapas de distribución de órganos revisados, son solo ruido para McCowan, la paciente de trasplante de Dallas, mientras enfrenta la posibilidad de intentar entrar en otra lista de espera.

Dice que la anima el aumento de la tasa de trasplantes, especialmente para los pacientes negros como ella, pero también teme no tener tanta suerte con una tercera ronda en la lista de espera.

“Sólo necesito un riñón que me sirva”, dijo. “Y lo necesito ahora”.

Este reportaje forma parte de una colaboración que incluye a , y KHN.

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Now her kidney function is failing again, and she’s facing the possibility of needing a third transplant. But the process of finding that lifesaving organ is rife with problems. Roughly on the waitlist — even as perfectly good donated organs end up in the trash. The agency that oversees donations and transplants is under scrutiny for how many organs are going to waste. The agency, the United Network for Organ Sharing, received a bipartisan tongue-lashing at a recent congressional hearing.

“Patients, we’re not looking at that,” McCowan said, referring to the policy debates. “We’re like, ‘Hey, I need a kidney for me. I need it now. I’m tired of dialysis. I feel like I’m about to die.’”

The number of kidney transplants by 16% under a new policy implemented by UNOS that prioritizes sicker patients over those who live closest to a transplant center. Still, nearly 100,000 patients are waiting on kidneys and even more for other organs.

A by the Senate Finance Committee uncovered numerous incidents previously undisclosed publicly. A few examples:

• Charleston, South Carolina: In November 2018, a patient died after receiving an organ with the wrong blood type.
• Las Vegas: In July 2017, two kidney recipients contracted a rare infection. One died days later.
• Kettering, Ohio: In June 2020, a transplant recipient was informed that he had accidentally received an organ from a donor with cancer and would likely develop cancer.

UNOS has held the contract to manage organ distribution since the beginning of the nation’s transplant system in 1984, and now U.S. senators — both Democrats and Republicans — are questioning whether it’s time for another entity to step in.

“The organ transplant system overall has become a dangerous mess,” Sen. Elizabeth Warren (D-Mass.) said during the . “Right now, UNOS is 15 times more likely to lose or damage an organ in transit as an airline is to lose or damage your luggage. That is a pretty terrible record.”

The investigation places blame on antiquated technology. The UNOS computer system has gone down for an hour or more at a time, delaying matches when every hour counts. There’s also no standard way to track an organ, even as companies like Amazon can locate any package, anywhere, anytime.

“I can’t even get a kidney that’s 20 miles away from my transplant center, with UNOS thinking it was in Miami,” said Barry Friedman, executive director of the transplant center at AdventHealth in Orlando, Florida. “It was actually in Orlando, 20 miles away.”

In the decade from 2010 to 2020, the congressional report found, UNOS received 53 complaints about transportation including numerous missed flights leading to canceled transplants and discarded organs. The report also cited a 2020 KHN investigation that uncovered many more incidents — nearly 170 transportation failures from 2014 to 2019. Even when organs do arrive, transplant surgeons say the lack of tracking leads to longer periods of “cold time” — when organs are in transit — because transplant surgeons often can’t start a patient on anesthesia until the organ is physically in hand.

One in 4 potential donor kidneys, , now go to waste. And that number has gotten worse as organs travel farther to reach sicker patients under the new allocation policy.

At the University of Alabama-Birmingham, a kidney arrived frozen solid and unusable in 2014, said Dr. Jayme Locke, who directs the transplant program. In 2017, a package came “squished” with apparent tire marks on it (though, remarkably, the organ was salvaged). And in one week in May of this year, Locke said, four kidneys had to be tossed for avoidable errors in transportation and handling.

“Opacity at UNOS means we have no idea how often basic mistakes happen across the country,” she said.

UNOS CEO has announced he’s at the end of September. He defends the organization he has led for a decade, pointing to the rising rate of transplants.

The new kidney allocation policy, , is partly responsible for that increased transplant rate. The policy also contributed to equity gains, boosting transplants for Black patients by 23%. Black patients, who are to experience kidney failure, have had difficulty getting onto transplant lists.

“While there are things we can improve — and we do every day — I do think it’s a strong organization that has served patients well,” Shepard said.

Another , published this year, found that any blame should be shared with the hospital transplant centers and the local organizations that procure organs from donors. The three entities work together but tend to turn into a triangular firing squad when people start asking why so many patients still die waiting for organs.

“[UNOS] is not the only source of problems with efficiency in the system,” said Renée Landers, a law professor who leads the biomedical concentration at Suffolk University in Boston. She was on the committee that helped produce the broader report. “Everybody had some work that they needed to do.”

The recent watchdog reports, as well as several over revised organ distribution maps, are just noise to McCowan, the Dallas transplant patient, as she faces the prospect of trying to get on yet another waitlist. She said she’s encouraged by the rising transplant rate, especially for Black patients like herself, but also fears she may not get so lucky with a third round on the waitlist.

“I just need a kidney that works for me,” she said. “And I need it now.”

This story is part of a partnership that includes ,Ìý,Ìýand KHN.

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Y podría, si recibe tres órganos de trasplantes… y el sistema de inmigración de Estados Unidos no se lo impide.

En un caso que refleja las fallas significativas y a menudo desgarradoras del sistema, los Espinosa se enfrentan no solo al complicado y costoso laberinto de la atención médica de la nación, sino también a un sistema de inmigración que el Congreso no ha reformado durante décadas.

Esa realidad caótica amenaza la vida de una niña estadounidense.

Julia nació en Miami cuando sus padres asistían a la universidad con visas de estudiante. Nació con un defecto congénito llamado , un torcido, y los médicos la salvaron de bebé al extraerle la mayor parte del.

Como nunca ha podido comer de manera normal, Julia ha sobrevivido gracias a infusiones diarias de nutrientes cuidadosamente elaboradas, que ingiere a través de un colocado en su pecho, explicó Espinosa.

Es una atención extremadamente costosa y especializada que, según Espinosa, Julia no podría obtener en Ecuador, a donde planeaban regresar.

En cambio, la familia se mudó a Seattle hace 10 años para estar cerca del Seattle Children’s Hospital, donde los especialistas pueden manejar bien las necesidades nutricionales de Julia. Aún así, obtener nutrición a través de infusiones no es algo para lo que el cuerpo humano esté diseñado, y el proceso ha dañado sus órganos.

Julia está en las listas de trasplantes para intestino delgado, y para reemplazar su hígado y páncreas deteriorados.

La salud de su hija ya es desafiante, pero Espinosa y su esposa, María Sáenz, enfrentan una lucha adicional: una batalla continua con las autoridades de inmigración para permanecer y trabajar legalmente en el país.

Por segunda vez en tres años, Espinosa enfrenta la posibilidad de perder su permiso de trabajo, lo que le costaría no solo su empleo como proveedor de soporte técnico en una empresa de software, sino también su seguro médico. Sin cobertura, su hija perdería su elegibilidad para trasplantes.

“Dependemos del seguro de salud para mantenerla en la lista de trasplantes”, dijo Espinosa. “Si no puedo mantener mi seguro, es posible que mi hija no sea elegible para un trasplante”.

Espinosa es consciente de su precaria posición y actuó pronto para renovar su estatus migratorio, lo que se conoce como acción médica diferida. Es una categoría en la que el gobierno posterga una deportación para que la persona pueda lidiar con una enfermedad grave.

Las personas que tienen una acción diferida también pueden solicitar un permiso de trabajo. Espinosa solicitó renovar su acción diferida en noviembre, a pesar de que su prórroga actual está vigente hasta finales de julio.

Sin embargo, no recibió noticias de Inmigración hasta hace poco, y la aprobación se produjo solo después de consultas a la agencia por parte de miembros del Congreso y de un reportero.

Así y todo, la familia aún no puede descansar tranquila. La solicitud de Espinosa para un nuevo permiso de trabajo aún no ha sido aprobada. Todavía puede perder su trabajo y seguro a fines de julio si el nuevo permiso no llega a tiempo.

Un vocero del Seattle Children’s Hospital informó que trabajarían con los Espinosa para cuidar a Julia si su seguro vence, aunque es posible que su lugar en la lista de trasplantes deba suspenderse, lo que dejaría a Espinosa ante opciones como Medicaid.

Incluso con la incertidumbre actual (una brecha en la cobertura podría resultar catastrófica), Espinosa dijo que tiene más esperanzas que hace una semana, ya que los permisos de trabajo generalmente se otorgan con el estatus de acción diferida.

Y la incertidumbre es algo a lo que Espinosa se ha acostumbrado en un país donde parece no haber un sistema racional para ayudar a las familias migrantes que enfrentan crisis de salud.

“El problema es que no hay un marco legal”, dijo Espinosa. “La acción diferida no es una visa, es solo una decisión del gobierno de no deportar”.

Si los médicos pueden mantener viva a Julia, la familia enfrentará la misma perspectiva aterradora de perder el estatus legal cuando este nuevo aplazamiento finalice en dos años.

No está claro cuántas otras familias enfrentan circunstancias similares. Katie Tichacek, vocera de la agencia de ciudadanía, no proporcionó datos, y no hay estadísticas disponibles públicamente.

después de que legisladores de Massachusetts los solicitaran en 2020 revelaron que, en 2018, hubo más de 700 solicitudes de acción diferida por razones médicas. Menos de la mitad fueron aprobadas.

Fue entonces cuando Julia enfrentó la primera amenaza contra su vida relacionada con la inmigración. En ese momento, la administración Trump suspendió todas las acciones médicas diferidas. Enfrentando demandas y protestas públicas, la administración cedió, pero Espinosa no pudo trabajar legalmente durante un año y medio.

Sin embargo, no todo ha sido tristeza. La familia ha manejado la condición de Julia para que asista a la escuela, pueda viajar y realizar actividades que le gustan.

“Hemos tratado de vivir al 100%, porque hasta ahora hemos tenido la suerte de tener a Julia”, dijo Espinosa. “Siempre nos han dicho que es posible que no lo logre. Originalmente fue el primer mes de su vida, luego fue el primer año, y luego dos años, y luego el siguiente período”.

Han vencido todo pronóstico haciendo todo lo que está a su alcance. Lo que no pueden controlar es la burocracia federal.

Incluso algunas de las cosas que están bajo su control, como elegir dónde vivir para darle a Julia la mejor oportunidad, pueden ser problemáticas. Espinosa dijo que algunos otros estados y regiones del país pueden tener una mayor disponibilidad de órganos. Mientras Julia se mantenga estable, quedarse donde están tiene más sentido. Sería diferente si el hígado de Julia siguiera deteriorándose.

Mahsa Khanbabai, miembro de la junta de la American Immigration Lawyers Association, dijo que el problema que enfrentan Espinosa y otras personas con necesidades obvias es que los Servicios de Ciudadanía e Inmigración están abrumados, con una burocracia y sin fondos, no están a la altura de la tarea.

“Este es un muy buen ejemplo de un sistema roto”, dijo Khanbabai. “Podría solucionarse fácilmente con una reforma migratoria”.

Tichacek dijo en un comunicado que la agencia no comenta sobre casos específicos, pero agregó que “está comprometida a promover políticas y procedimientos que protejan a los más vulnerables”, y que está trabajando arduamente para reconstruir la confianza con los inmigrantes y ampliar el acceso a servicios vitales.

Espinosa es muy consciente de que incluso con la atención de los medios, la asistencia legal y la ayuda de legisladores, su familia aún podría pasar desapercibida. No sabe qué podría pasar entonces, pero, como dijo: “haré todo lo necesario para salvar a mi hija”.

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And she might, if she can get three organs transplanted — and if the U.S. immigration system doesn’t get in the way.

In a case that reflects the significant and often-heartbreaking failures in how the U.S. welcomes newcomers to the country, the Espinosas are confronting not just the nation’s complicated and expensive health care maze, but an immigration system that Congress has not reformed for decades. Despite calls for coherent reform, immigration policy has been largely set through scattershot legislation and whipsawing administrative actions, often modified by the courts.

That chaotic reality is threatening an American girl’s life.

Julia was born in Miami when her parents were attending college on student visas. She had a birth defect , a twisted , and doctors saved her as a baby by removing most of the organ. Never able to eat normally, Julia has survived by getting carefully crafted daily infusions of nutrients through an in her chest, Espinosa said.

It’s extremely expensive and specialized care that Espinosa said Julia could not get in his home country of Ecuador, where they had planned to return. Instead, the family moved to Seattle 10 years ago to be near Seattle Children’s Hospital, where specialists can manage Julia’s nutritional needs well. Still, getting nutrition through infusions is not something the human body was designed for, and it has done damage to her internal organs. She is on transplant lists for the small intestine she lost at birth, and to replace her deteriorating liver and pancreas.

Their daughter’s health circumstances would be challenging enough, but Espinosa and his wife, Maria Saenz, face an additional struggle — an ongoing battle with immigration authorities to stay and work in the U.S. legally.

For the second time in three years, Espinosa faces the prospect of losing permission to work, which would cost him not only his job providing tech support at a software company, but also his health insurance. Without health insurance, his daughter would lose her eligibility for transplants.

“We are relying on the current health insurance to keep her on the transplant list,” Espinosa said. “If I cannot keep my health insurance, then my daughter might not be eligible for a transplant.”

Espinosa is acutely aware of his precarious position, and acted early to renew his immigration status, known as medical deferred action. It’s a category in which the government says it will defer trying to deport someone so they can deal with a severe illness. People who have action deferred can also apply for a work permit. Espinosa applied to renew his deferred action in November, even though his current deferment was good until the end of July.

He heard nothing back from U.S. Citizenship and Immigration Services, however, until just recently, and the approval came only after inquiries to the agency from members of Congress and a reporter.

The family still can’t rest easy, though. Espinosa’s application for a new work permit has not yet been approved. He can still lose his job and insurance at the end of July if the new permit is not granted in time, which is far from a certainty.

A spokesperson for Seattle Children’s Hospital indicated officials there would work with the Espinosas to care for Julia if there is a lapse in her insurance, though her place in line on the transplant lists might have to be put on hold, leaving Espinosa to scramble for backup options like Medicaid.

Even with the remaining uncertainty — a long gap in coverage could still prove catastrophic — Espinosa said he is much more hopeful than he was just a week earlier, since work permits generally are granted with deferred action status. And uncertainty is something Espinosa has gotten used to in a country where there seems to be no rational system to deal with migrant families facing health crises.

“The problem is that there is no legal framework behind what I have,” Espinosa said. “Deferred action is not a visa, it’s just a decision from the government not to deport.”

If doctors can keep Julia alive, the family will face the same frightening prospect of losing legal status when this new deferral ends in two years.

Exactly how many other families face similar circumstances is not clear. Katie Tichacek, a spokesperson for the citizenship agency, would not provide data showing how often such cases arise, and no statistics are publicly available. Data after Massachusetts lawmakers asked for it in 2020 said that there were more than 700 requests nationwide for deferred action for medical reasons in 2018 and that fewer than half were approved. Those numbers plummeted in 2019.

That was when Julia faced the first immigration-related threat to her life. At the time, the Trump administration suspended all medical deferred action. Facing lawsuits and a public outcry, the administration relented, but Espinosa couldn’t work legally for a year and a half. Working off the books could have put him in further jeopardy. He said they survived on “mercy and family support” from relatives in Ecuador.

It hasn’t been a life of gloom and doom, though. The family has managed Julia’s condition so that she goes to school when there are no pandemic restrictions, they travel, and she pursues her interests. Aside from being unable to survive by eating, she’s like any other girl.

“We’ve tried to live 100%, because we’ve been lucky to have Julia so far,” Espinosa said. “We’ve been always told that she might not make it. It was originally the first month of her life, then it was the first year, and then it’s two years, and then the next whatever period.”

They’ve beaten the odds by doing anything and everything that is in their control. What isn’t in their control is the federal bureaucracy. “We’re here still, but, yeah, we have to fight immigration,” Espinosa said.

Even some of the things that are in their control, like choosing where to live to give Julia the best shot, can be problematic. Espinosa said some other states and regions of the country tend to have greater availability of organs. While Julia remains stable, staying where they are makes the most sense. The calculus would change if the deterioration of Julia’s liver were to accelerate.

“If that is the case, then we have to contemplate how are we going to be treated in these other states,” Espinosa said. “Like for example, getting a simple thing like your driver’s license, it’s not that simple when you have deferred action.”

Mahsa Khanbabai, a board member for the American Immigration Lawyers Association, said the problem that Espinosa and other people in obvious need face is that Citizenship and Immigration Services is overwhelmed. An increasingly centralized and underfunded bureaucracy is not up to the task. “This is a very good example of a broken system,” Khanbabai said, noting that many more people are in less dramatic but similar situations. “There’s just a lot of heartbreak that could easily be fixed with immigration reform.”

Tichacek said in a statement that the agency does not comment on specific cases but that it “is committed to promoting policies and procedures that protect those most vulnerable” and is working hard to rebuild trust with immigrants and expand access to vital immigration services.

Espinosa is all too aware that even with media attention, legal assistance, and help from lawmakers, his family could still fall through the cracks. He doesn’t know what could happen then, but he will use whatever tools he can to save his child.

“I don’t know what I’ll need, and I’ll do whatever it takes,” he said.

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• ”
• Read Aleccia’s “Organ Centers to Transplant Patients: Get a Covid Shot or Move Down on Waitlist”

KHN Midwest correspondent Lauren Weber discussed covid deaths in rural America on Iowa Public Radio’s “River to River” on Oct. 7.

• ”
• Read Weber’s “Covid Is Killing Rural Americans at Twice the Rate of Urbanites”

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When he arrived at the rehab facility in North Kansas City, Missouri, they sent him directly to the adjoining hospital. There, Gorzney, then 50, and his family learned he had severe alcoholic hepatitis, an inflammation of the liver typically associated with excessive alcohol use.

Gorzney had been on and off for years and, by February 2020, was having as many as a dozen drinks a day. His only chance of survival was a liver transplant, doctors said.

“So let’s do that,” his daughter Cameron Gorzney, now 22, told them. She was ready for anything that would save her dad, the man who had coached her softball team until high school and later cheered from the stands at every game.

But Gorzney wasn’t eligible for a transplant, the doctors said. He hadn’t been six months sober.

In the U.S., a widespread practice requires patients with to complete a period of sobriety before they can get on the waiting list for a liver.

This informal policy, often called “the 6-month rule,” can be to the 1980s. The thinking then — and among proponents of the practice today — was that six months of abstinence gave a patient’s liver time to heal and, thus, avoid a transplant. If that didn’t work, the patient would have proven they can stay sober and would not return to drinking after a transplant.

However, a published in 2011 and several American studies in the decade since have exposed flaws in that premise. Six months of abstinence is not a good predictor of long-term sobriety, and for people with conditions like Gorzney’s, more than half . Now, as the understanding of addiction evolves — viewing it as a disease rather than a personal failing — many surgeons and families say the six-month hold unfairly penalizes those with substance use disorder. And with alcoholic liver disease and pandemic-related drinking exacerbating those numbers, it has become a pressing concern.

“We have to move beyond denying people lifesaving therapy because we think they don’t deserve it,” said , head of the liver transplant program at Johns Hopkins Medicine in Baltimore. Doctors don’t withhold treatment from people with diabetes who are obese or people with sexually transmitted infections who had unprotected sex, he said.

Cameron and his colleagues this August, which found that among patients with alcoholic liver disease who were made to wait six months and those who were not, about 20% in each group returned to drinking one year after their transplants. That means about 80% stayed sober, regardless of how long they abstained from alcohol before the surgery.

“There was nothing at all helpful or predictive about a six-month waiting period,” Cameron said.

No national regulation determines how long a patient needs to be abstinent before being added to the waitlist; each transplant center sets its own policies. As of 2019, only about one-third of liver transplant hospitals in the U.S. had . Patients who don’t live near those hospitals — or don’t have the knowledge and resources to get to them — can die without ever making it onto the waitlist, Cameron said.

On the other hand, some physicians worry abandoning the six-month rule of donor organs. With nearly 12,000 people on the waiting list for a liver, it’s crucial to ensure patients who receive transplants are ready to care for themselves and the “gift of the donated organ,” said , a transplant surgeon and past president of the United Network for Organ Sharing, which manages the nation’s transplant system. (UNOS determines who ultimately receives a donor organ, but it does not determine who can or cannot be put on the waitlist.)

Since 2016, alcoholic liver disease has justification for a liver transplant, and since these patients often have dire prognoses with little time to live, they can quickly jump to the top of the waiting list, surpassing those with liver cancer or other diseases. When one patient receives a liver, “someone else is not getting that organ,” Andreoni said. “It’s just math.”

He said more long-term research is needed. “If all these people [who receive transplants without the waiting period] are doing great and living 15 years, then that’s the right answer.” Only time and statistics will tell.

, treasurer of the American Society of Transplantation, said some hospitals may worry that transplanting organs into patients with a higher risk of relapse could result in poor outcomes and threaten their accreditation or insurance contracts.

In fact, some insurance companies require patients to provide documentation of a sobriety period before agreeing to cover the cost of surgery. A found 24 states had such policies, while 14 did not. (Twelve states didn’t perform any liver transplants that year.)

In Brian Gorzney’s case, insurance wasn’t the issue. Finding a hospital to say yes was.

When the team at North Kansas City Hospital, which is not a transplant center, suggested Gorzney look into hospice options, his family refused. They took him across state lines to the University of Kansas Health System for a second opinion.

There, Gorzney’s daughter Cameron, his ex-wife (Cameron’s mom), his then-girlfriend and his sister teamed up to explain why they knew Gorzney would stay sober and care for a new liver responsibly. He had held steady jobs throughout his life, they said. He had never had a DUI. He coached his daughters’ softball teams and was like a father figure to his sister, who is 10 years younger. He was headed to rehab before this crisis started, and he had a supportive family to help him sustain sobriety after surgery.

But, ultimately, the hospital’s transplant committee said no.

In a statement about the general transplant process, , medical director of liver transplantation at the hospital, said each candidate is reviewed by a committee of more than 30 members. “High risk transplant patients may be required to complete 6 months of counseling to demonstrate an ongoing commitment to sobriety,” he wrote, but there is an “expedited pathway” for people with alcoholic hepatitis who also have a “low risk for recidivism.”

Gorzney was considered for this pathway, but the committee didn’t approve him, his daughter Cameron said.

She was devastated by the no. But she’s stubborn, she said, just like her dad. So, she and the rest of the family frantically scoured news articles and academic studies and called transplant hospitals across the country for another option.

“My dad was really deteriorating each day,” she said.

They finally settled on the University of Iowa, where Cameron Gorzney had attended her first year of college and heard of its renowned medical system. The family made their case on Gorzney’s behalf again. This time, they got a yes. The family’s group text exploded, Cameron recalled.

, medical director of liver transplantation at the University of Iowa Hospitals and Clinics, said most hospitals that allow transplants without the six-month wait look at similar factors: the patient’s medical need, financial stability, social support, understanding of their addiction and desire to recover. But the subjectivity of these measures means different transplant committees can come to different decisions.

In a letter to Gorzney, the Iowa transplant team explained they’d typically recommend a six-month waiting period but were approving him for the waiting list immediately because he wouldn’t survive otherwise. In return, Gorzney agreed to attend counseling and treatment programs after the transplant.

Within 24 hours of being put on the waitlist, Gorzney received a new liver.

Today, more than a year and a half later, Gorzney, 52, is still sober and embracing the “opportunity to be somebody that I haven’t been in a while,” he said.

He and his girlfriend are engaged, and he’s grateful to see his daughters, Cameron and Carson, grow into young adults. A lifelong Illinois Fighting Illini football fan, he even considers rooting for the Iowa Hawkeyes now.

But it worries him that the six-month rule, which led his family to travel to three hospitals in three states, still stymies others.

“People are, unfortunately, passing away … not knowing that there may be other options for them because they don’t have a support group that I had that was aggressive enough and strong enough to reach out and not accept no on the first response they got.”

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