I was over-the-moon happy for Roth. He’s not only alive — he’s a recipient of and witness to sheer human kindness. Organs are limited resources, as are the donors — living and deceased — who are willing to share them.
I also have a donor to thank.
Five months ago, a young man I never met saved my life. My liver stopped working — suddenly and unexpectedly — and I was told I needed a new one to survive. My doctors suspect I had a toxic reaction to a medication I was taking to treat a rare and newly diagnosed condition. I was considered a “Status 1A” patient, which meant I didn’t have months or even weeks to wait for a new liver.
I had days before I would likely go into a coma and die.
But surgeons, social workers and administrators sprang into action. Over the next few days, they came across a liver from a young man who was the best match in terms of organ size, blood type and other factors.
The window to transplant his liver was eight to 12 hours after his death. Thankfully, he had expressed that he wanted to be a donor, or his family had made that decision. After many conversations, tests and a nearly eight-hour operation, my life changed forever.
Timing is everything
Like Roth, I was full of gratitude — even more so because I know Black folks like me and other people of color are less likely to receive organ transplants than White people.
How would I say thank you? An organ isn’t just any gift. And there’s no guarantee it will function properly.
I don’t have much personal information about my donor — only his medical issues, age and nationality. I’d like to connect with his family one day, but for now I’m just hoping that the thank-you letter I sent via my organ procurement organization — which manages local organ recovery efforts — is well received.
I am also grateful to my medical team. I’m alive in a time when transplants are common and often successful. A great-aunt died of liver failure in 1959, just a few years before procedures to replace such organs were possible. She was only 49. The first successful human liver transplant was performed in 1963, but it wasn’t until 1967 that a liver transplant patient lived more than a year.
Now survival rates are higher, and recipients on average live much longer. There are protocols to determine who can give and receive organs, but need has historically outpaced availability.
I worry that Black, Latino and low-income patients are less likely to receive organ transplants than White and higher-income patients. They’re also less likely to be donors. The reasons why include historic mistrust of the health care system.
I’m lucky — the transplant system worked well for me. I had enough support to recover from surgery and the insurance to help pay for it. But it’s sadly not the reality for everyone. Seventeen patients die per day waiting for an organ transplant, the Health Resources & Services Administration estimates.
I wanted to know what’s preventing people in vulnerable communities from getting transplants and what’s being done to fix the problem.
I wanted my experience with the transplant system to be the norm, not feel like a miracle.
Organ donations could be higher
In 2021, nearly 170 million people were registered as donors in the United States. That number, coupled with the fact that a single organ donor can save up to eight lives, seems to offer hope for transplant candidates.
But only a fraction of registered donors will ever actually save a life. Just over 20,000 living and deceased donors made around 41,000 transplants possible in 2021. That figure was an all-time high, according to the United Network for Organ Sharing, the nonprofit contracted to run the national transplant system under the federal government.
Yet more than 100,000 people are on the national transplant waiting list today, and nearly 60% are people of color, according to that organization. Who gets these organs? The Organ Procurement and Transplantation Network numbers show 48% go to people of color and 52% go to Whites.
Most donors don’t look like me
Thirty percent of deceased donors identified as ethnic or racial minorities, according to 2021 data from the United Network for Organ Sharing. And the number of living donors of color — people who donate things such as a kidney, part of a liver or bone marrow — stands at about 29%. In contrast, people of color make up about 40% of the US population.
“There are more White donors,” said Arthur Caplan, professor and founding head of the Division of Medical Ethics at New York University’s Grossman School of Medicine. “They don’t match minority people as well as they do Whites. So biology drives more organs toward White people just because there’s more White people to donate.”
Some ethnic minorities, such as Korean, Samoan and Tongan Americans, have an especially hard time finding organs, he said.
Even though people of different races do match each other, members of the same ethnic group tend to be compatible in terms of tissue, blood type and other biological factors. Good donor-recipient matches lead to better results for the patient and the transplant system itself. When more people from different racial backgrounds register to donate, chances go up that more transplant candidates will find an organ when they need it.
The most sought-after organ
Another reason White people tend to receive a disproportionate share of organs is supply and demand. Kidneys are the most sought-after organ in the United States, and according to Organ Procurement and Transplantation Network data, about 85% of the national transplant waiting list is made up of people in need of one. Demand always outweighs supply.
“White people are more likely to get transplanted than Black people. By far, the most common organ to be listed for is (the) kidney, and that’s also the only organ with majority non-White people getting listed,” said Allan B. Massie, professor and director of NYU’s Center for Surgical and Transplant Applied Research Qualitative Core, via email.
There are nearly 800,000 people living with end-stage kidney disease, according to the National Institute of Diabetes and Digestive and Kidney Diseases. It’s one of the most common reasons for needing a kidney transplant. But for every White person with the disease, the institute reports there are three Black people with the condition.
The median wait time for Black patients is 59.9 months, longer than the median wait time for White people, which is 41.3 months. The median wait time for Hispanic or Latino patients is 55.8 months.
Getting on the list
The biggest problem is “getting to the transplant list,” said Dr. Jerry McCauley, incoming president of the United Network for Organ Sharing and medical director of transplantation services at Thomas Jefferson University, and not getting on it can be an obstacle to transplant equity.
“Black people on dialysis are less likely to get wait-listed for kidney transplantation than White people on dialysis,” Massie said via email.
Caplan noted that White people are more likely to receive more transplants because they tend to have better health insurance. As a result, a doctor can see them and recommend them for the waiting list. Conversely, Black people, Latinos, American Indians, Alaskan Natives or Native Hawaiians and other Pacific Islanders are less likely to have health insurance, according to the Kaiser Family Foundation.
Caplan said inequities in general health and access to health care — issues linked to socioeconomic status and a history of discrimination — also affect who gets an organ and even who ends up needing one in the first place.
“Poor minorities — Native Americans on the reservation, poor people in inner-city Brooklyn, probably poor Hispanics in like Corpus Christi, Texas … a lot of undocumented people,” Caplan said, “they will need transplants more because obesity rates are higher, high blood pressure is not controlled and (they’ve) got more diabetes.”
There’s also another culprit, according to Dr. Juan Carlos Caicedo, founder and director of the Hispanic Transplant Program at Northwestern University: Most US transplant centers have not implemented a multicultural or multilingual approach to care.
“Only 10% of those programs have a website translating different languages besides English,” he said.
Caicedo’s research indicates that centers incorporating multiple languages and culturally sensitive care are successful in getting more Hispanic patients to be living donors.
Mylanah Yolangco, director of community engagement at the Asian American Donor Program, said that getting people of color to donate organs is not the only issue. It’s also difficult for people of color to find bone marrow and stem cell matches.
“Patients who are White have the highest chances of finding a fully matched donor. That’s 79%. The community with the lowest chances of matching are the Black and African American communities at 29%,” said Yolangco, adding that Asian and Pacific Islanders have a 47% chance of finding a match, Hispanics or Latinos 48% and Native Americans 60%.
It’s unfortunate, Caplan said, the need for transplants among certain groups exceeds the number of available organs; it affects patients’ ability to find good matches, but it’s unfair when language, class and race also limit access to transplant care, he said.
Embracing a 2nd chance
The point of the transplant system is to keep more people alive and healthy — which includes Black women such as myself as well as low-wage earners and those who don’t speak English as a native language.
My new liver has given me a second chance, one that comes with more doctors’ appointments and more fear of the unpredictability of life. But there’s also a commitment to raising awareness for organ donations among people of color as well as a lot more love for organ donors, especially the man who saved my life.