When Anna Rose was 23 years old, she had nothing to do but lie in her bed in Portland and wait for the call that two lungs were ready for her in Seattle.
“My doctor at the time was really rushing those surgeons,” she said. “‘You better get good lungs for this girl, because she’s young.’”
Rose was put on the lung transplant waiting list after the pulmonary hypertension she’d had since she was a child suddenly worsened in her early 20s. She started fainting regularly and spent her time in and out of the hospital. During a particularly scary stay, she was rushed to University of Washington’s Lung Transplant Center in Seattle for evaluation for the transplant waiting list. She was then sent back home to Portland and told to wait until lungs were ready.
“That’s when I got really worried,” said Rose, “How long am I going to be like this? I couldn’t drive… I was just slowly dying in my own bed, just waiting for this call.”
Even though her life depended on her place on the organ transplant list, her medical care team and the lung transplant center told her very little.
“I can understand why they didn’t tell me because, what if you’re at the bottom of the list?” said Rose, “Then you lose the will to live.”
Each year, about 5,000 people on the U.S. transplant waiting list diewhile waiting for an organ — at least in part due to an outdated, ineffective donation system. Since the beginning of the U.S. transplant system 39 years ago, organ donation has been overseen by a single entity, the United Network for Organ Sharing, or UNOS.
The Senate Finance Committee conducted a two-year independent investigation into the problems with UNOS. Oregon Democratic Sen. Ron Wyden, chair of the committee, said the government didn’t question UNOS’ $62 million annual federal contract until this investigation.
“It’s a monopoly,” Wyden said. “They’ve had it for years, and basically, their contract just keeps getting re-upped.”
UNOS was given the monopoly intentionally in 1984. The idea was that lack of competition would prevent organs from being sold to the highest bidder. However, the finance committee investigation turned up deep systemic issues in UNOS. The organ donation system is hampered by long wait times, outdated technology, regional and racial inequities, and an overall lack of transparency.
“And then just some plain horrors,” said Wyden. “We saw examples of organs lying around airport hangers.”
“I think the lack of competition has been the biggest problem plaguing patients now for decades,” said Greg Segal, who founded patient advocacy group Organize after watching his father wait four years for a heart transplant.
“There’s a stagnation that often comes with a monopoly,” he said, “Which means we’re just decades behind on where we could have, and should have, been for patients.”
Segal points to the conflicted functions inside of UNOS’s monopoly. For example, UNOS is responsible for investigating its own patient safety violations. The Senate Finance Committee investigation revealed emails in which UNOS executives joked that their patient safety review board is “like putting your kids’ artwork up at home. You value it because of how it was created, rather than whether it’s well done.” The investigation confirmed for Segal that, “the system has been monopolistic, unaccountable, unsafe, and inequitable for decades,” he said.
In addition, the Senate finance committee investigation found the database that runs the organ transplant waiting list uses outdated technology and suffers regular outages. It has algorithmic flaws — sometimes offering organs to already-deceased recipients as many as four times, or marking patients who have been waiting for years as “inactive,” meaning they are skipped over for matches.
Every minute counts with organ donation — a heart only has a four-hour window when it can be transplanted. A delay in matching deceased donors to waiting recipients can cause sorely-needed organs to go to waste.
Preventable medical errors were also made by UNOS — with transplant recipients receiving organs with the wrong blood type or diseased organs from donors with HIV, rabies, hepatitis C and other transmittable infections.
The system is so fraught with errors that as much as 30% of donatable kidneys go to waste. And while Amazon can tell customers how many stops away their delivery is, life-saving human organs are still mostly tracked with paper and pencil.
Organs are regularly mislaid and damaged in transit — a human heart was left on a Southwest Airlines flight, and another organ arrived “squished” with tire tracks. An investigation by Kaiser Health News found that UNOS is 15 times more likely to lose or damage a kidney in transit than an airline is to lose your luggage.
Where patients live can also be a matter of life and death for someone waiting.
Portlander Jenna Zak lost her twin sister Erika four years ago after a 17-month-long wait for a liver transplant. People advised her sister to move to a state with high fentanyl overdoses because more organs would be available for donation, since opioid overdoses are often organ-donation eligible deaths.
UNOS oversees a network of 56 Organ Procurement Organizations, or OPOs. Each OPO has a monopoly for its region. These nonprofit organizations are responsible for working with potential donors and their families and getting their organs to people waiting for them.
Some OPOs function well — but others fall dramatically short.
Patients can be five times more likely to get a needed transplant if they live in a place where the OPO is doing a good job. Oregon’s OPO, now called Cascade Life Alliance, ranks below the national median for performance. Rankings from 2021 give Oregon’s OPO a grade of “underperforming.”
Seven Oregon patients die each month waiting for a transplant, representing about 10 percent of the total state waiting list.
While Jenna Zak’s sister was waiting for a liver transplant, people even suggested she ingest sodium to worsen her liver function in order to move higher on the transplant waiting list.
“I don’t think we need to have a system where you’re making yourself sicker to get an organ, right?” asked Zak.
If OPOs were doing their job effectively, researchers estimate there could be tens of thousands more donatable organs going to patients who need them every year. There might not even need to be a waiting list.
“Estimates from transplant researchers are that within two or three years, there could be a zeroed-out waiting list for heart, lung and liver transplants,” said Dr. Esther Choo, professor of emergency medicine at Oregon Health & Science University. “And a drastically reduced wait list for kidney transplants,” she said.
Reducing the wait list might also help improve the staggering racial discrepancies in the transplant system. Black patients are half as likely to be placed on a kidney transplant waitlist as white patients. Once they get on the waiting list, they wait, on average, a year longer than their white counterparts. For decades, a racially-biased calculator placed Black patients lower on the waiting list by overestimating their kidney function.
“In a given year, 48% of white patients on these waiting lists will get their organs. It’s only 26% for Black patients, it’s only 29% for Hispanic patients,” said Choo.
“It’s big — almost a doubling of difference,” said Choo, “It begins well before you even get to the process of evaluation for transplant.”
But there’s hope that things might change.
Wyden co-sponsored the Securing the U.S. Organ Procurement and Transplantation Network Act, which passed with bipartisan support in July. The legislation pushes for modernization and fixing the underlying racial bias in the waiting list. It also opens the door to breaking UNOS’s monopoly for the first time in history — something Wyden thinks will help improve the system overall.
“I think there’s something about this whole process, this moment in history. This is one of those rare moments where you feel like we could really do something here,” said Choo, “I feel like it is a deep cynicism that it can only get better.”
Meanwhile, Anna Rose has been doing well since her double lung transplant 20 months ago, even returning to figure skating lessons. She hopes she won’t have to go through the waiting process for lung donation again.
“I have been giving myself a pep talk once in a while going like, look, we’re keeping these lungs, we’re not doing anything else. We’re keeping them. And if you fuck it up, we’re not going to live, OK?” said Rose. “So we’re living, you don’t have a choice.”
The Biden administration said it expects to open the organ donation system for bid to a new contractor this fall and that patients could see improvements quickly.
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