麻豆女优 Health News Midwest correspondent Cara Anthony discussed problems with the organ transplantation industry on Apple News’ “Apple News Today” on Sept. 23.

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

麻豆女优 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.

麻豆女优 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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麻豆女优 Health News chief Washington correspondent Julie Rovner discussed the Senate hearing of former Centers for Disease Control and Prevention director Susan Monarez on WBUR’s “Here & Now” on Sept. 17.

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.

麻豆女优 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 “.”

麻豆女优 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 “,” with reporting from Arthur Allen.

麻豆女优 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 “.”

麻豆女优 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 “,” with reporting from Christine Mai-Duc, Sam Whitehead, and Arielle Zionts.

麻豆女优 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 “.”

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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 鈥� 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 麻豆女优 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 麻豆女优 Health News, questioned whether Black’s injury 鈥� from gunfire 鈥� 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 麻豆女优 Health News that her organization has walked away from cases when patients’ conditions change 鈥� 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, 鈥榃hoa.’”

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, 鈥業’m good, sis,’” Payne recalled. “鈥業’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: 鈥楾hat’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, 鈥業f you want them to pull a plug, if you tired and you giving up, blink once,’” Black recalled. “鈥業f 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.

鈥楴ot 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, 鈥楴ot right now,’” Black’s sister recalled. “鈥業t’s kind of too soon.’”

Payne said the woman persisted.

“She was like, 鈥榃ell, 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, 鈥楳y brother’s in there tapping on the bed,’” Payne said. “They said, 鈥楾hat’s just his nerves.’ But I’m like, 鈥楴o, something’s not right.’ It’s like he was too alert. He was letting us know: 鈥楶lease 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.

鈥�#搁滨笔惭测叠谤辞迟丑别谤’

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.

“鈥楬e’s gone,’” Lawrence Black Sr. recalled being told. “鈥楬e’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.

鈥業 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.”

麻豆女优 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 麻豆女优 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, 鈥業 can’t kill your son,’” Payne recalled. “She said, 鈥楨xcuse 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.

鈥�“I remember him looking at me and saying, 鈥業’m so glad you stopped that,’” Zohny recalled. “And I said, 鈥榃hy?’ And he said: 鈥業 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.’”

鈥楤ack 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 鈥� both on the street and in the hospital 鈥� 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 鈥� which are mostly kidneys 鈥� 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 鈥� the “hours that the organ is going to just sit, going nowhere” 鈥� 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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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 鈥� 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, 鈥楬ey, 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 鈥� both Democrats and Republicans 鈥� 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 鈥� 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” 鈥� when organs are in transit 鈥� 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 鈥� and we do every day 鈥� 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 , , and KHN.

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And she might, if she can get three organs transplanted 鈥� 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 鈥� 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 鈥� a long gap in coverage could still prove catastrophic 鈥� 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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KHN senior correspondent JoNel Aleccia discussed organ transplants and the covid-19 vaccine on NBC’s “NBC Now” on Oct. 8.

• “
• 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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The night before Brian Gorzney planned to check into rehab for alcohol use, he began vomiting blood. First at 2 a.m. Then 5. And again at 11.

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 鈥� and among proponents of the practice today 鈥� 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 鈥� viewing it as a disease rather than a personal failing 鈥� 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 鈥� or don’t have the knowledge and resources to get to them 鈥� 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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Mark Buchanan, of Roopville, received a double-lung transplant in October, nearly three months after covid left him hospitalized and sedated, first on a ventilator and then on the last-resort treatment known as ECMO.

“They said that it had ruined my lungs,” said Buchanan, 53, who was a burly power company lineman when he fell ill. “The vent and the covid ruined ’em completely.”

At the time, only a handful of U.S. hospitals were willing to take a chance on organ transplants to treat the sickest covid patients. Too little was known about the risks of the virus and lasting damage it might cause, let alone whether such patients could survive the surgery. Buchanan was turned down at Emory University Hospital in Atlanta, according to his wife, Melissa, who said doctors advised her to withdraw treatment and allow him to die peacefully.

“They were telling me to end his life. I told them absolutely not,” recalled Melissa Buchanan, 49. “We all started Googling any place that would take someone who needed a lung transplant.”

It took calls to several hospitals, plus a favor from a hometown physician, before Buchanan was accepted at the University of Florida Health Shands Hospital, 350 miles away in Gainesville, Florida. He received his new lungs Oct. 28.

Nearly six months later, the transplant landscape has radically changed. Covid-related transplants are surging as hospitals grapple with a growing subset of patients whose organs 鈥� most often hearts and lungs 鈥� are “basically destroyed by the virus,” said Dr. Jonathan Orens, a lung transplant expert at Johns Hopkins University School of Medicine in Baltimore.

Nearly 60 transplants were performed through March 31 for patients with covid-related organ disease, according to figures released Monday by the United Network for Organ Sharing, which oversees transplants in the U.S. That includes at least 54 lung and four heart transplants recorded since new codes for covid-specific diagnoses were adopted in late October. One patient received a combination heart-lung transplant. Another 26 patients eligible for covid-related lung transplants and one eligible for a heart transplant remain on waiting lists, UNOS data show.

Nearly two dozen hospitals have performed the surgeries, with new sites added every month.

“You’re seeing it move around the country, and it’s moving around pretty quick,” said Dr. David Weill, former director of the Stanford University Medical Center’s lung and heart-lung transplant program who now works as a consultant. “It’s like wildfire, where centers are saying, 鈥榃e did our first one, too.’”

The upsurge in transplants has been fueled largely by the broad reach of the virus. As U.S. covid cases top 31 million, with more than , thousands of patients who survived particularly serious infections are left with badly damaged organs that pose life-threatening complications.

“I think this is just the beginning,” said Dr. Tae Song, surgical director of the lung transplant program at the University of Chicago Medical Center. “I expect this to be a completely new category of transplant patients.”

Tens of thousands of patients whose organs were otherwise healthy have developed severe, chronic lung disease after contracting covid. Because it’s a novel disease, exactly how many will go on to need lung transplants isn’t yet clear, said Weill, who has called for the development of a lung transplant registry to track outcomes.

So far, the rise in covid-related transplants has not dramatically affected the existing waiting lists for organs. Of the more than 107,000 patients on waiting lists, about 3,500 need hearts and more than 1,000 need lungs. Most of the rest are waiting for kidney transplants, which have not been subject to a significant increase because of covid.

Organs for transplant are allocated according to , including how long the patients have been waiting, how ill they are, how likely they are to survive with a transplant and how close they are to donor hospitals. The goal is to treat the most medically urgent cases first. The rules don’t necessarily bump covid patients to the front of the line, experts said, but many become sick enough to require immediate care.

That was the case for Al Brown, a 31-year-old car salesman in the Chicago suburb of Riverdale, Illinois, who caught covid in May and was diagnosed with congestive heart failure several weeks later. In September, he woke up with severe chest pains that sent him to the emergency room.

“Shortly after, they told me my heart was working at only, like, 10%,” Brown said. “It wasn’t pumping blood through my whole body.”

Medications didn’t fix the problem, so doctors offered him several choices, including a mechanical pump to help his heart temporarily 鈥� or a transplant. “They told me, basically, I was young and I had a lot of life left in me,” said Brown, the father of two young daughters. “I actually picked the option of a heart transplant.”

Brown, who had hit the gym regularly, was an ideal candidate, said Dr. Sean Pinney, co-director of the heart and vascular center at University of Chicago Medicine. “This guy was healthy except for covid, except for heart failure.” Brown received his transplant in October and continues to recuperate.

Most covid-related transplants are performed on patients whose lungs have been irreversibly weakened by the disease. Thousands of covid survivors have developed ARDS, or acute respiratory distress syndrome, which allows fluid to leak into the lungs. Others develop pulmonary fibrosis, which occurs when lung tissue becomes scarred.

“What was once a scaffold of soft, living cells turns into a stiff mesh that’s not capable of exchanging gases,” said Song.

While conditions like pulmonary fibrosis typically develop over months or years, often in response to toxins or medications, covid patients seem to get much sicker, much faster. “Instead of months, it’s more on the order of weeks,” Song said.

These patients are often placed on mechanical ventilation and then ECMO, or extracorporeal membrane oxygenation, in which a machine takes over the functions of the heart and lungs. Many become stranded on the machines, so sick that their only options are transplantation or death.

Even then, not everyone is eligible for a transplant. In many covid patients, damage isn’t limited to a single organ. Others have preexisting conditions such as diabetes or obesity that can complicate recovery from surgery or preclude it entirely. And, often, those who have been sedated for weeks or months aren’t likely to survive the trauma of transplant.

Successful transplant candidates are likely patients younger than 65 who are otherwise healthy and whose lungs will not heal on their own, said Dr. Tiago Machuca, chief of thoracic surgery at UF Health Shands Hospital, who helped draft for covid-related lung transplants.

“This is a very different profile of patients,” said Machuca. “These patients had normal lung function. They’re young, and now they find themselves on mechanical ventilation or ECMO, fighting for their lives.”

Mark Buchanan landed in that situation last fall after his entire family caught covid. His children, Jake, 22, and Lauren, 18, had mild cases. His wife, Melissa, was quite ill, though never hospitalized, and quickly had to turn to helping her husband.

“I had to rely solely on God and my family and friends,” she said. “It’s hard to explain how stressful it was.”

Buchanan survived the transplant and then spent three months recovering at the Florida hospital. He lost more than 70 pounds and was weak. “I couldn’t brush my teeth or feed myself,” he said. “I had to learn to eat, swallow, talk, walk all over again.”

Buchanan arrived home in January to a parade of 400 neighbors and friends. He has begun speaking to church groups and others about his fight for a transplant. Many people in his small community remain skeptical about covid. Wearing a mask and keeping his distance, he tries to set them straight.

“People still make a joke of it,” he said. “But I was in the hospital 170 days. You tell me: Is it real or not?”

Buchanan was one of at least 17 patients to receive covid-related lung transplants at Shands in the past year, the most of any hospital in the country. Machuca credits its dedicated lung unit, which had already focused on patients with complex respiratory conditions.

It remains unclear whether widespread vaccination will stem the number of covid patients who require transplants 鈥� or whether transplant candidates among survivors will continue to rise. There’s no doubt, however, that the pandemic has changed the profile of those considered for lung transplantation, Machuca said.

“Before covid, transplanting patients with acute respiratory failure was a 鈥榥o,’” he said. “I think this is expanding the limits of what we felt was possible.”

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As her son lay in the intensive care unit with a tube in his tiny lungs, Jayci began imagining worst-case scenarios. She worried that if Griffin ended up needing a lung transplant, he might be refused because he has Down syndrome.

“It was terrifying knowing that they could deny him certain lifesaving services,” she said.

Denying organ transplants to people with intellectual and neurodevelopmental disabilities like Down syndrome or autism is common in the United States, even though it is illegal under the Americans with Disabilities Act.

According to , 44% of organ transplant centers said they would not add a child with some level of neurodevelopmental disability to the organ transplant list. Eighty-five percent might consider the disability as a factor in deciding whether to list the person.

After Griffin recovered, Jayci brought Montana lawmakers’ attention to the issue. Largely as a result of her campaigning, the state is considering a bill that would ban physicians from denying an organ transplant based solely on a patient’s disability. Last month, ” 鈥� passed the Montana Senate 50-0.

Although Montana has no transplant centers of its own, advocates hope this bill and others like it will draw attention to the issue and pressure physicians to examine why they are making certain decisions. Andrés Gallegos, chairman of the National Council on Disability, said he hopes such legislation will inspire “a change of heart so people understand that they are discriminating.”

If the bill passes the state House and is signed by the governor, Montana would become the to ban such discrimination. Seven other states and the have similar bills pending, although some experts doubt such laws will be enforceable enough to eliminate discrimination.

With more than nationwide, and average wait times extending for some organs, physicians have to frequently make heart-rending decisions about which patients are likely to benefit most.

According to a , many physicians and organ transplant centers worry that patients with intellectual or neurodevelopmental disabilities are more likely to have co-occurring conditions that would make a transplant dangerous, or that these patients’ quality of life is unlikely to improve with a transplant. Others believe that these patients may not be able to comply with post-transplant requirements, such as taking immunosuppressive drugs.

But the report, which scoured research papers and medical reports, found that none of these concerns is universally true. Rather, disabled patients can benefit as much as any other patient, according to the NCD, an independent federal agency.

“If a determination is made to not include a person on the list only because that individual has a disability, that’s blatant discrimination,” said Gallegos.

Many intellectually disabled patients and their families see this firsthand. When Joe Eitl was born in 1983 with a congenital heart defect, his mother, Peg, was told that Joe would never be a candidate for a new heart because of his Down syndrome. So, when his heart failed in 2019, eight hospitals refused to even consider a transplant for Joe, who lives with his mother in Philadelphia.

Peg Eitl conceded that Joe’s case was difficult, given he’d had prior reconstructive heart surgery that would complicate a transplant. She pleaded with transplant centers for more than a year and even considered suing them. Last October, Vanderbilt University agreed to perform the procedure. Joe came home Feb. 10 and is recovering.

“I think my greatest frustration was the value placed on someone with special needs,” Peg Eitl said. “It pains me that they’re discounted as being less than and not as worthy.”

Bioethicist of Stanford University, who authored the 2008 study on the extent of transplant discrimination, said people like Peg Eitl shouldn’t have to prove that Joe would benefit from a transplant. Because people with disabilities are a protected class in the United States, he said, “the burden is on people who want to discriminate.”

But that doesn’t appear to be the case in practice. In September, Magnus a follow-up survey of more than 300 transplant programs. Of these, 71% said they would automatically disqualify an adult with an IQ under 35, which is considered severe intellectual disability, while 12% would disqualify a child at that level. Only about 20% of the institutions had formal guidelines regarding child patients.

Magnus suspects these numbers are low given that some physicians may be unwilling to admit to discrimination. He has not yet studied whether new state laws have affected physicians’ likelihood to discriminate against disabled patients.

But Magnus doubts that laws like Montana’s bill will be enforceable. Part of determining any patient’s eligibility for a transplant, he said, is whether they or a caretaker can comply with post-transplant requirements such as remembering to take immunosuppressant drugs. If a person with a disability can’t meet these criteria, that person might not be a good candidate.

“All of these are terribly difficult judgments,” Magnus said.

Transplant surgeons need to maximize the limited supply of organs and ensure they survive in the patients who receive them. If they don’t, “it’s taking an organ from someone who could have benefited from it,” said Dr. Marwan Abouljoud, president of the American Society of Transplant Surgeons.

Abouljoud said institutions have differing standards for weighing the importance of an intellectual disability in a transplant decision. Ideally, he said, the committee that determines whether to list someone for a transplant will include social workers and behavioral psychologists, as well as program leadership, who can find ways to help the person comply.

On Feb. 12, the transplant surgeons’ society adopted a new supporting nondiscrimination and encouraging transplant centers to find ways to support these patients. “We will be urging states to adopt local policies on this,” Abouljoud said.

Sam Crane, legal director at the Autistic Self Advocacy Network, which has written model legislation adopted by several states, said that some bills 鈥� including Montana’s 鈥� address the concern about post-transplant care. They ban transplant centers from basing their decision solely on a person’s ability to carry out post-transplant requirements and require an investigation into sources of support to help the patient comply.

But Crane said physicians could still come up with a pretext to avoid adding a disabled person to the transplant list if they believe a person without a disability would benefit more from receiving an organ.

“It’s very difficult to prove discrimination in that sort of situation,” she said.

Although a similar nondiscrimination bill has been introduced in the U.S. House of Representatives, Crane said advocates prefer to focus on state laws. Organizations like the autism group have taken the position that the ADA and other federal laws already prohibit this kind of discrimination, making federal legislation unnecessary. Gallegos added that states can also enact stricter requirements than the federal government and fit them to their specific medical systems.

Under state laws, patients can appeal to local courts for an emergency injunction or restraining order. These hearings can be conducted quickly, allowing a judge to decide whether to compel an institution to add a person to the transplant list.

That speed is what Jayci Dalrymple hopes Griffin’s Law will achieve. “When you’re needing to stop discrimination, you’re racing the clock,” she said.

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麻豆女优 Health News Midwest correspondent Cara Anthony discussed problems with the organ transplantation industry on Apple News’ “Apple News Today” on Sept. 23.

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

麻豆女优 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.

麻豆女优 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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麻豆女优 Health News chief Washington correspondent Julie Rovner discussed the Senate hearing of former Centers for Disease Control and Prevention director Susan Monarez on WBUR’s “Here & Now” on Sept. 17.

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.

麻豆女优 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 “.”

麻豆女优 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 “,” with reporting from Arthur Allen.

麻豆女优 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 “.”

麻豆女优 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 “,” with reporting from Christine Mai-Duc, Sam Whitehead, and Arielle Zionts.

麻豆女优 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 “.”

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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 鈥� 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 麻豆女优 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 麻豆女优 Health News, questioned whether Black’s injury 鈥� from gunfire 鈥� 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 麻豆女优 Health News that her organization has walked away from cases when patients’ conditions change 鈥� 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, 鈥榃hoa.’”

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, 鈥業’m good, sis,’” Payne recalled. “鈥業’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: 鈥楾hat’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, 鈥業f you want them to pull a plug, if you tired and you giving up, blink once,’” Black recalled. “鈥業f 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.

鈥楴ot 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, 鈥楴ot right now,’” Black’s sister recalled. “鈥業t’s kind of too soon.’”

Payne said the woman persisted.

“She was like, 鈥榃ell, 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, 鈥楳y brother’s in there tapping on the bed,’” Payne said. “They said, 鈥楾hat’s just his nerves.’ But I’m like, 鈥楴o, something’s not right.’ It’s like he was too alert. He was letting us know: 鈥楶lease 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.

鈥�#搁滨笔惭测叠谤辞迟丑别谤’

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.

“鈥楬e’s gone,’” Lawrence Black Sr. recalled being told. “鈥楬e’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.

鈥業 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.”

麻豆女优 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 麻豆女优 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, 鈥業 can’t kill your son,’” Payne recalled. “She said, 鈥楨xcuse 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.

鈥�“I remember him looking at me and saying, 鈥業’m so glad you stopped that,’” Zohny recalled. “And I said, 鈥榃hy?’ And he said: 鈥業 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.’”

鈥楤ack 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 鈥� both on the street and in the hospital 鈥� 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 鈥� which are mostly kidneys 鈥� 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 鈥� the “hours that the organ is going to just sit, going nowhere” 鈥� 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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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 鈥� 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, 鈥楬ey, 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 鈥� both Democrats and Republicans 鈥� 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 鈥� 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” 鈥� when organs are in transit 鈥� 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 鈥� and we do every day 鈥� 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 , , and KHN.

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And she might, if she can get three organs transplanted 鈥� 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 鈥� 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 鈥� a long gap in coverage could still prove catastrophic 鈥� 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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KHN senior correspondent JoNel Aleccia discussed organ transplants and the covid-19 vaccine on NBC’s “NBC Now” on Oct. 8.

• “
• 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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The night before Brian Gorzney planned to check into rehab for alcohol use, he began vomiting blood. First at 2 a.m. Then 5. And again at 11.

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 鈥� and among proponents of the practice today 鈥� 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 鈥� viewing it as a disease rather than a personal failing 鈥� 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 鈥� or don’t have the knowledge and resources to get to them 鈥� 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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Mark Buchanan, of Roopville, received a double-lung transplant in October, nearly three months after covid left him hospitalized and sedated, first on a ventilator and then on the last-resort treatment known as ECMO.

“They said that it had ruined my lungs,” said Buchanan, 53, who was a burly power company lineman when he fell ill. “The vent and the covid ruined ’em completely.”

At the time, only a handful of U.S. hospitals were willing to take a chance on organ transplants to treat the sickest covid patients. Too little was known about the risks of the virus and lasting damage it might cause, let alone whether such patients could survive the surgery. Buchanan was turned down at Emory University Hospital in Atlanta, according to his wife, Melissa, who said doctors advised her to withdraw treatment and allow him to die peacefully.

“They were telling me to end his life. I told them absolutely not,” recalled Melissa Buchanan, 49. “We all started Googling any place that would take someone who needed a lung transplant.”

It took calls to several hospitals, plus a favor from a hometown physician, before Buchanan was accepted at the University of Florida Health Shands Hospital, 350 miles away in Gainesville, Florida. He received his new lungs Oct. 28.

Nearly six months later, the transplant landscape has radically changed. Covid-related transplants are surging as hospitals grapple with a growing subset of patients whose organs 鈥� most often hearts and lungs 鈥� are “basically destroyed by the virus,” said Dr. Jonathan Orens, a lung transplant expert at Johns Hopkins University School of Medicine in Baltimore.

Nearly 60 transplants were performed through March 31 for patients with covid-related organ disease, according to figures released Monday by the United Network for Organ Sharing, which oversees transplants in the U.S. That includes at least 54 lung and four heart transplants recorded since new codes for covid-specific diagnoses were adopted in late October. One patient received a combination heart-lung transplant. Another 26 patients eligible for covid-related lung transplants and one eligible for a heart transplant remain on waiting lists, UNOS data show.

Nearly two dozen hospitals have performed the surgeries, with new sites added every month.

“You’re seeing it move around the country, and it’s moving around pretty quick,” said Dr. David Weill, former director of the Stanford University Medical Center’s lung and heart-lung transplant program who now works as a consultant. “It’s like wildfire, where centers are saying, 鈥榃e did our first one, too.’”

The upsurge in transplants has been fueled largely by the broad reach of the virus. As U.S. covid cases top 31 million, with more than , thousands of patients who survived particularly serious infections are left with badly damaged organs that pose life-threatening complications.

“I think this is just the beginning,” said Dr. Tae Song, surgical director of the lung transplant program at the University of Chicago Medical Center. “I expect this to be a completely new category of transplant patients.”

Tens of thousands of patients whose organs were otherwise healthy have developed severe, chronic lung disease after contracting covid. Because it’s a novel disease, exactly how many will go on to need lung transplants isn’t yet clear, said Weill, who has called for the development of a lung transplant registry to track outcomes.

So far, the rise in covid-related transplants has not dramatically affected the existing waiting lists for organs. Of the more than 107,000 patients on waiting lists, about 3,500 need hearts and more than 1,000 need lungs. Most of the rest are waiting for kidney transplants, which have not been subject to a significant increase because of covid.

Organs for transplant are allocated according to , including how long the patients have been waiting, how ill they are, how likely they are to survive with a transplant and how close they are to donor hospitals. The goal is to treat the most medically urgent cases first. The rules don’t necessarily bump covid patients to the front of the line, experts said, but many become sick enough to require immediate care.

That was the case for Al Brown, a 31-year-old car salesman in the Chicago suburb of Riverdale, Illinois, who caught covid in May and was diagnosed with congestive heart failure several weeks later. In September, he woke up with severe chest pains that sent him to the emergency room.

“Shortly after, they told me my heart was working at only, like, 10%,” Brown said. “It wasn’t pumping blood through my whole body.”

Medications didn’t fix the problem, so doctors offered him several choices, including a mechanical pump to help his heart temporarily 鈥� or a transplant. “They told me, basically, I was young and I had a lot of life left in me,” said Brown, the father of two young daughters. “I actually picked the option of a heart transplant.”

Brown, who had hit the gym regularly, was an ideal candidate, said Dr. Sean Pinney, co-director of the heart and vascular center at University of Chicago Medicine. “This guy was healthy except for covid, except for heart failure.” Brown received his transplant in October and continues to recuperate.

Most covid-related transplants are performed on patients whose lungs have been irreversibly weakened by the disease. Thousands of covid survivors have developed ARDS, or acute respiratory distress syndrome, which allows fluid to leak into the lungs. Others develop pulmonary fibrosis, which occurs when lung tissue becomes scarred.

“What was once a scaffold of soft, living cells turns into a stiff mesh that’s not capable of exchanging gases,” said Song.

While conditions like pulmonary fibrosis typically develop over months or years, often in response to toxins or medications, covid patients seem to get much sicker, much faster. “Instead of months, it’s more on the order of weeks,” Song said.

These patients are often placed on mechanical ventilation and then ECMO, or extracorporeal membrane oxygenation, in which a machine takes over the functions of the heart and lungs. Many become stranded on the machines, so sick that their only options are transplantation or death.

Even then, not everyone is eligible for a transplant. In many covid patients, damage isn’t limited to a single organ. Others have preexisting conditions such as diabetes or obesity that can complicate recovery from surgery or preclude it entirely. And, often, those who have been sedated for weeks or months aren’t likely to survive the trauma of transplant.

Successful transplant candidates are likely patients younger than 65 who are otherwise healthy and whose lungs will not heal on their own, said Dr. Tiago Machuca, chief of thoracic surgery at UF Health Shands Hospital, who helped draft for covid-related lung transplants.

“This is a very different profile of patients,” said Machuca. “These patients had normal lung function. They’re young, and now they find themselves on mechanical ventilation or ECMO, fighting for their lives.”

Mark Buchanan landed in that situation last fall after his entire family caught covid. His children, Jake, 22, and Lauren, 18, had mild cases. His wife, Melissa, was quite ill, though never hospitalized, and quickly had to turn to helping her husband.

“I had to rely solely on God and my family and friends,” she said. “It’s hard to explain how stressful it was.”

Buchanan survived the transplant and then spent three months recovering at the Florida hospital. He lost more than 70 pounds and was weak. “I couldn’t brush my teeth or feed myself,” he said. “I had to learn to eat, swallow, talk, walk all over again.”

Buchanan arrived home in January to a parade of 400 neighbors and friends. He has begun speaking to church groups and others about his fight for a transplant. Many people in his small community remain skeptical about covid. Wearing a mask and keeping his distance, he tries to set them straight.

“People still make a joke of it,” he said. “But I was in the hospital 170 days. You tell me: Is it real or not?”

Buchanan was one of at least 17 patients to receive covid-related lung transplants at Shands in the past year, the most of any hospital in the country. Machuca credits its dedicated lung unit, which had already focused on patients with complex respiratory conditions.

It remains unclear whether widespread vaccination will stem the number of covid patients who require transplants 鈥� or whether transplant candidates among survivors will continue to rise. There’s no doubt, however, that the pandemic has changed the profile of those considered for lung transplantation, Machuca said.

“Before covid, transplanting patients with acute respiratory failure was a 鈥榥o,’” he said. “I think this is expanding the limits of what we felt was possible.”

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As her son lay in the intensive care unit with a tube in his tiny lungs, Jayci began imagining worst-case scenarios. She worried that if Griffin ended up needing a lung transplant, he might be refused because he has Down syndrome.

“It was terrifying knowing that they could deny him certain lifesaving services,” she said.

Denying organ transplants to people with intellectual and neurodevelopmental disabilities like Down syndrome or autism is common in the United States, even though it is illegal under the Americans with Disabilities Act.

According to , 44% of organ transplant centers said they would not add a child with some level of neurodevelopmental disability to the organ transplant list. Eighty-five percent might consider the disability as a factor in deciding whether to list the person.

After Griffin recovered, Jayci brought Montana lawmakers’ attention to the issue. Largely as a result of her campaigning, the state is considering a bill that would ban physicians from denying an organ transplant based solely on a patient’s disability. Last month, ” 鈥� passed the Montana Senate 50-0.

Although Montana has no transplant centers of its own, advocates hope this bill and others like it will draw attention to the issue and pressure physicians to examine why they are making certain decisions. Andrés Gallegos, chairman of the National Council on Disability, said he hopes such legislation will inspire “a change of heart so people understand that they are discriminating.”

If the bill passes the state House and is signed by the governor, Montana would become the to ban such discrimination. Seven other states and the have similar bills pending, although some experts doubt such laws will be enforceable enough to eliminate discrimination.

With more than nationwide, and average wait times extending for some organs, physicians have to frequently make heart-rending decisions about which patients are likely to benefit most.

According to a , many physicians and organ transplant centers worry that patients with intellectual or neurodevelopmental disabilities are more likely to have co-occurring conditions that would make a transplant dangerous, or that these patients’ quality of life is unlikely to improve with a transplant. Others believe that these patients may not be able to comply with post-transplant requirements, such as taking immunosuppressive drugs.

But the report, which scoured research papers and medical reports, found that none of these concerns is universally true. Rather, disabled patients can benefit as much as any other patient, according to the NCD, an independent federal agency.

“If a determination is made to not include a person on the list only because that individual has a disability, that’s blatant discrimination,” said Gallegos.

Many intellectually disabled patients and their families see this firsthand. When Joe Eitl was born in 1983 with a congenital heart defect, his mother, Peg, was told that Joe would never be a candidate for a new heart because of his Down syndrome. So, when his heart failed in 2019, eight hospitals refused to even consider a transplant for Joe, who lives with his mother in Philadelphia.

Peg Eitl conceded that Joe’s case was difficult, given he’d had prior reconstructive heart surgery that would complicate a transplant. She pleaded with transplant centers for more than a year and even considered suing them. Last October, Vanderbilt University agreed to perform the procedure. Joe came home Feb. 10 and is recovering.

“I think my greatest frustration was the value placed on someone with special needs,” Peg Eitl said. “It pains me that they’re discounted as being less than and not as worthy.”

Bioethicist of Stanford University, who authored the 2008 study on the extent of transplant discrimination, said people like Peg Eitl shouldn’t have to prove that Joe would benefit from a transplant. Because people with disabilities are a protected class in the United States, he said, “the burden is on people who want to discriminate.”

But that doesn’t appear to be the case in practice. In September, Magnus a follow-up survey of more than 300 transplant programs. Of these, 71% said they would automatically disqualify an adult with an IQ under 35, which is considered severe intellectual disability, while 12% would disqualify a child at that level. Only about 20% of the institutions had formal guidelines regarding child patients.

Magnus suspects these numbers are low given that some physicians may be unwilling to admit to discrimination. He has not yet studied whether new state laws have affected physicians’ likelihood to discriminate against disabled patients.

But Magnus doubts that laws like Montana’s bill will be enforceable. Part of determining any patient’s eligibility for a transplant, he said, is whether they or a caretaker can comply with post-transplant requirements such as remembering to take immunosuppressant drugs. If a person with a disability can’t meet these criteria, that person might not be a good candidate.

“All of these are terribly difficult judgments,” Magnus said.

Transplant surgeons need to maximize the limited supply of organs and ensure they survive in the patients who receive them. If they don’t, “it’s taking an organ from someone who could have benefited from it,” said Dr. Marwan Abouljoud, president of the American Society of Transplant Surgeons.

Abouljoud said institutions have differing standards for weighing the importance of an intellectual disability in a transplant decision. Ideally, he said, the committee that determines whether to list someone for a transplant will include social workers and behavioral psychologists, as well as program leadership, who can find ways to help the person comply.

On Feb. 12, the transplant surgeons’ society adopted a new supporting nondiscrimination and encouraging transplant centers to find ways to support these patients. “We will be urging states to adopt local policies on this,” Abouljoud said.

Sam Crane, legal director at the Autistic Self Advocacy Network, which has written model legislation adopted by several states, said that some bills 鈥� including Montana’s 鈥� address the concern about post-transplant care. They ban transplant centers from basing their decision solely on a person’s ability to carry out post-transplant requirements and require an investigation into sources of support to help the patient comply.

But Crane said physicians could still come up with a pretext to avoid adding a disabled person to the transplant list if they believe a person without a disability would benefit more from receiving an organ.

“It’s very difficult to prove discrimination in that sort of situation,” she said.

Although a similar nondiscrimination bill has been introduced in the U.S. House of Representatives, Crane said advocates prefer to focus on state laws. Organizations like the autism group have taken the position that the ADA and other federal laws already prohibit this kind of discrimination, making federal legislation unnecessary. Gallegos added that states can also enact stricter requirements than the federal government and fit them to their specific medical systems.

Under state laws, patients can appeal to local courts for an emergency injunction or restraining order. These hearings can be conducted quickly, allowing a judge to decide whether to compel an institution to add a person to the transplant list.

That speed is what Jayci Dalrymple hopes Griffin’s Law will achieve. “When you’re needing to stop discrimination, you’re racing the clock,” she said.

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