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.
鈥淢y doctor at the time was really rushing those surgeons,鈥� she said. 鈥溾�榊ou better get good lungs for this girl, because she鈥檚 young.鈥欌��
Rose was put on the lung transplant waiting list after the pulmonary hypertension she鈥檇 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鈥檚 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.
鈥淭hat鈥檚 when I got really worried,鈥� said Rose, 鈥淗ow long am I going to be like this? I couldn鈥檛 drive鈥� I was just slowly dying in my own bed, just waiting for this call.鈥�
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.
鈥淚 can understand why they didn鈥檛 tell me because, what if you鈥檙e at the bottom of the list?鈥� said Rose, 鈥淭hen you lose the will to live.鈥�
Each year, about while waiting for an organ 鈥� at least in part due to an outdated, ineffective donation system.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鈥檛 question UNOS鈥� until this investigation.
鈥淚t鈥檚 a monopoly,鈥� Wyden said. 鈥淭hey鈥檝e had it for years, and basically, their contract just keeps getting re-upped.鈥�
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 The organ donation system is hampered by long wait times, outdated technology, regional and racial inequities, and an overall lack of transparency.
鈥淎nd then just some plain horrors,鈥� said Wyden. 鈥淲e saw examples of organs lying around airport hangers.鈥�
鈥淚 think the lack of competition has been the biggest problem plaguing patients now for decades,鈥� said Greg Segal, who founded patient advocacy group after watching his father wait four years for a heart transplant.
鈥淭here鈥檚 a stagnation that often comes with a monopoly,鈥� he said, 鈥淲hich means we鈥檙e just decades behind on where we could have, and should have, been for patients.鈥�
Segal points to the conflicted functions inside of UNOS鈥檚 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 鈥� The investigation confirmed for Segal that, 鈥渢he system has been monopolistic, unaccountable, unsafe, and inequitable for decades,鈥� 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 鈥� sometimes offering organs to already-deceased recipients as many as four times, or marking patients who have been waiting for years as 鈥渋nactive,鈥� meaning they are skipped over for matches.
Every minute counts with organ donation 鈥� 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 鈥� 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 . 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 鈥� , and another organ arrived 鈥渟quished鈥� with tire tracks. 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.
. 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 .
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 鈥� 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. . Rankings from 2021 give Oregon鈥檚 OPO a grade of 鈥渦nderperforming.鈥�
Seven Oregon patients die each month waiting for a transplant, representing about 10 percent of the total state waiting list.
While Jenna Zak鈥檚 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.
鈥淚 don鈥檛 think we need to have a system where you鈥檙e making yourself sicker to get an organ, right?鈥� 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.
鈥淓stimates from transplant researchers are that within two or three years, there could be a zeroed-out waiting list for heart, lung and liver transplants,鈥� said Dr. Esther Choo, professor of emergency medicine at Oregon Health & Science University. 鈥淎nd a drastically reduced wait list for kidney transplants,鈥� she said.
Reducing the wait list might also help improve the staggering racial discrepancies in the transplant system. Black patients are to be placed on a kidney transplant waitlist as white patients. Once they get on the waiting list, they wait, on average, . For decades,
鈥淚n a given year, 鈥� said Choo.
鈥淚t鈥檚 big 鈥� almost a doubling of difference,鈥� said Choo, 鈥淚t begins well before you even get to the process of evaluation for transplant.鈥�
But there鈥檚 hope that things might change.
Wyden co-sponsored the , 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鈥檚 monopoly for the first time in history 鈥� something Wyden thinks will help improve the system overall.
鈥淚 think there鈥檚 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,鈥� said Choo, 鈥淚 feel like it is a deep cynicism that it can only get better.鈥�
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鈥檛 have to go through the waiting process for lung donation again.
鈥淚 have been giving myself a pep talk once in a while going like, look, we鈥檙e keeping these lungs, we鈥檙e not doing anything else. We鈥檙e keeping them. And if you fuck it up, we鈥檙e not going to live, OK?鈥� said Rose. 鈥淪o we鈥檙e living, you don鈥檛 have a choice.鈥�
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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