This article originally appeared on WebMD and was a finalist in The Atlanta Press Club's 2024 Awards of Excellence.
LaQuayia "LQ" Goldring stood in her living room, holding the letter her mom had just handed her. The organ transplant team had good news: She might move up on the waitlist for a kidney transplant. A key formula used to determine her place in the waitlist was racially biased and would be redone.
But it felt like "a slap in the face," Goldring, 33, says. Years had been wasted.
Goldring has had kidney disease almost all her life. She lost her left kidney to a rare cancer as a toddler. Her right kidney started to fail when she was a young teen. She got it replaced, but with kidney disease in her genes, the transplanted kidney soon began to fail. At 25, Goldring rejoined the kidney waitlist.
Like Goldring, more than 103,000 people in the U.S. are registered on organ transplant waitlists. Exactly how long they'll wait can vary from days to years, depending on things including how sick they are, organ availability, and how well the patient matches with a donor.
The demand for donated organs far exceeds the supply. Compared to White patients on the list, Black patients are less likely to get an available organ. In 2021, 47% of White patients on the waiting list received transplants, compared to nearly 28% of Black people on the waiting list, according to the Office of Minority Health (part of the U.S. Department of Health and Human Services).
The waitlists rely on a complex mix of factors. Race, by itself, is not one of those factors.
"But people of color face greater barriers from the moment their organ fails, to getting on the waiting list, to actually receiving a transplant -- if they ever do," says Charles Bearden, the longest-serving organ recovery/transplant coordinator in the U.S. He contributed to a 2022 National Academies of Sciences, Engineering, and Medicine report on inequities in the organ transplant system. That report states, "The current organ transplantation system in the United States is demonstrably inequitable. Certain groups of patients (e.g., racial and ethnic minority populations, lower socioeconomic status, female gender, older patients, individuals with intellectual and developmental disabilities, or inheritable diseases such as cystic fibrosis) receive organ transplants at a disproportionately lower rate and in some cases after longer wait times than other patients with comparable need."
For example, Black people on the kidney transplant list wait, on average, a year longer than White patients to get a kidney transplant, according to the National Kidney Foundation.
There are no easy fixes. But there is momentum. The U.S. organ transplant program, run by the nonprofit United Network for Organ Sharing (UNOS), has been under scrutiny by Congress and the federal government for a wide range of issues, including data and inequities.
In March, the Health Resources & Services Administration (HRSA) announced a modernization initiative for the transplant network that includes strengthening equitable access to transplantation and greater transparency. But will changes come in time for Goldring and thousands of other people like her?
Biased Math
The recalculation promised to Goldring and other Black people with kidney failure is the estimated glomerular filtration rate (eGFR). A measure of kidney function, it helps determine how urgently someone needs a new kidney and their place on the waitlist.
Until recently, the formula included being Black or not. Based on flawed research that suggested Black people had higher muscle mass than others, it led to an interpretation of eGFR that made Black people's kidney function register as 16% better than that of their White peers. The result, Bearden says, is that Black people's kidney function appeared to last longer.
"It's racist, it's wrong, and it keeps Black people off the transplant list," says Martha Pavlakis, MD, chair of the Kidney Transplantation Committee for the Organ Procurement and Transplantation Network (OPTN), run by UNOS. One of OPTN's strategic goals is to provide equity in access to transplants.
The UNOS banned transplant programs from using race in patients' eGFRs last summer. In January, UNOS ordered transplant programs to recalculate the eGFRs and waiting times of Black patients already on their lists.
Those recalculations have started. But transplant centers have until January 2024 to complete them. And it may not make a big difference for some patients, according to Bearden. "Instead of being 1,000th in line, maybe you'll be 800th," he says.
Invisible Hurdles
Kidneys are the most transplanted organs in the U.S. The liver, heart, lungs, and pancreas are next.
In addition to medical considerations, social factors such as income, insurance, housing, and transportation play "an enormous role" in who gets on the waitlist, says Jayme Locke, MD, MP, a transplant surgeon and director of the transplantation division at UAB Medicine in Birmingham, AL. "Ethnic minorities bear the greater burden of those factors," says Locke, who testified before the Senate Finance Committee about the organ transplant system in August 2022.
Once a patient makes the waitlist, they may not stay on it. Goldring has fallen off the transplant list before. Once, she says, she got dropped from Medicaid because her wife made "a few dollars" over the eligible limit. Another time, the state's Medicaid program changed hands and she had to requalify for an organ transplant.
"There goes 6 months I've been inactive on the list that could have saved my life," says Goldring, who lives in Bardstown, KY. She says she'll never know whether a matching kidney went to someone else during that time.
When People Don't Make the List
There have been "extraordinary advances" in managing medical and surgical complexities in transplants, says Lisa McElroy, MD, an abdominal transplant surgeon at Duke Health in Durham, NC.
But the same hasn't been true for social factors. People who don't make the waitlist, including for socioeconomic reasons, aren't studied. That's a missed opportunity, McElroy says.
For example, if a transplant center kept track and found that patients tended not to make the list because they don't have a car, the center could consider starting a transportation program, McElroy suggests. In addition to her work as a surgeon, she researches ways to eliminate inequality and improve access to organ transplants.
The logistical costs are steep. A charter flight for a donated liver can cost $30,000, UAB's Locke says. "Think about how many Ubers that would buy for patients who need transportation to appointments. Leave the liver where it is. Use the money to resource the patient."
Encouraging More Organ Donations
It can be harder to find the best organs for Black people. The most likely match for any transplant candidate is an organ that comes from a donor of the same race.
Every state has nonprofit organ procurement organizations (OPOs) that are responsible for identifying potential deceased organ donors and asking the family's consent. This often happens when families are in an ER waiting room after learning that their loved one has died.
Jack Lynch, senior advisor at Gift of Hope, an Illinois OPO, has had those hard talks with many families. When he started doing that in 1987, he says 3 out of 4 Black families that Gift of Hope approached declined to donate their loved one's organs.
Lynch recalls watching ER doctors at Chicago's Cook County Hospital (now called the John H. Stroger, Jr. Hospital of Cook County) use medical jargon when telling families that there was nothing more they could do to save their loved one. After the doctor left, Lynch made sure the family understood everything the doctor had said "before I got anywhere near the question of organ donation." This became Gift of Hope's standard approach and part of how they train other OPOs to approach families.
Research backs up the importance of that first connection. Black families are more likely to consent to organ donation when OPO staff spend more time with them, according to a study published in the Journal of Racial and Ethnic Disparities in 2020.
Today, 3 out of 4 Black families approached by Gift of Hope consent to organ donation, the reverse of what it was in 1987, Lynch says.
Flawed Formulas
Even after Black families consent to donate a deceased loved one's organs, there can still be obstacles.
Not all organ transplants are successful. So doctors use formulas, or indexes, to predict how long certain donated organs, including kidneys and the pancreas, are likely to last in the potential recipient. Black race, a factor in these calculations, yields a score that suggests the organ won't last as long. "The formulas we use to quantify organ quality include coefficients that presume a higher risk of graft failure based on Black race," says Duke's McElroy. These scores influence medical decisions on whether to use the organ. The National Academies' report recommends that these prediction indexes get updated at least every 5 years, removing or adding predictors to improve accuracy or increase equity.
When it comes to kidneys, "those problems don't outweigh the bigger problem, which is lingering on dialysis," Lynch says.
Likewise, donor race has been shown to have no bearing on how pancreas recipients ultimately do.
"A lot of what determines a patients' long-term success is biology," Duke's McElroy says. "We use race in far too many models to predict success."
Experts, advocates, and waitlisted patients hope changing the system will improve their chances on the waitlist.
"When you're faced with so many barriers to transplant, you don't want anyone else to have to go through that," Goldring says. "I try to help others wherever I can, but I need just as much help as they do."
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