People of color get left behind at every stage of the organ transplantation process, but Colorado donor groups and transplant centers are trying to close those gaps.

Patients whose organs are failing have to clear multiple hurdles, including extensive testing, to show they’re healthy enough for surgery and line up insurance so they can continue to pay for immune-suppressing medications for the rest of their lives.

Some never even get to those steps, though, because they aren’t told transplantation is an option for them, and Black and Hispanic patients are more likely to get lost at every step, according to a report published this year by the National Academies of Science, Engineering and Math. Women, older people and those with disabilities also are less likely to make it through the process and receive an organ.

It’s not necessarily because patients of color aren’t healthy enough. A study looking at 986,000 dialysis patients from 2005 to 2014 found that Black and Hispanic patients were actually younger, on average, and had fewer other conditions than white patients, but were still less likely to receive kidney transplants in the first three years after starting dialysis. While the odds of receiving a transplant from a living or deceased donor improved four to five years in, about 65% of dialysis patients die within five years, meaning a delay could prove fatal.

The study’s authors noted that patients from all three groups were rejected as medically unfit at similar rates, even though white patients were sicker, on average. That suggested that those evaluating patients were applying a higher standard for people who are Black or Hispanic, whether or not they were conscious of doing so.

Dr. Sixto Giusti, director of the Hispanic Transplant Program at UCHealth, said when Hispanic patients are referred for treatment, they tend to be further along in the disease process, making it harder to prevent the need for extreme measures like transplantation. That, combined with language barriers, distrust in the health care system, practical concerns like transportation and perhaps doctors’ perceptions of who can and can’t handle the rigorous transplantation process, all contribute to worse outcomes, he said.

“Problem starts way earlier”

The Hispanic Transplant Program was started in 2018 to try to close some of the gaps in kidney and liver transplantation. A study evaluating it found the number of Spanish-speaking patients placed on the waiting list at the University of Colorado was 50% higher in 2018 and 2019 than in the 2015 to 2017 period. (2020 was excluded because the pandemic significantly reduced the number of transplants overall.) The increase in transplantation surgeries was more modest, though, at about 5%.

All of the providers are bilingual, and most are originally from Latin America, so they’re familiar with immigrant patients’ needs and beliefs, Giusti said. They also have translated educational materials into Spanish, reminded community providers to consider referring their Spanish-speaking patients and hired navigators to help patients through the insurance and medical hurdles to qualify for a transplant.

“It’s not the same as a Coloradan who learned Spanish in high school,” he said.

But to make a real dent in disparities, the country would have to improve access to care before someone’s kidneys have failed, Giusti said.

“The problem starts way earlier” than when patients arrive at a transplant center, he said.

Hispanic Americans are about 30% more likely than white Americans to have kidney failure, Giusti said. The top causes of kidney disease are untreated diabetes and high blood pressure, and Hispanics are less likely to have access to consistent health care that could prevent those conditions or keep them under control, he said. About 85% of all people waiting for an organ nationwide need a kidney.

The disparity is even larger for chronic liver disease, with about twice the risk among Hispanic people than white people. The most common causes of chronic liver disease are hepatitis viruses, heavy alcohol use and non-alcoholic fatty liver disease, which is a possible complication of obesity and high blood sugar levels. Some hepatitis viruses can be cured, and the odds of fatty liver disease can be reduced by treating a person’s other chronic conditions.

The average person in Colorado who needs a kidney from a deceased donor may wait anywhere from two to six years, depending on how common their blood type is. Since life expectancy on dialysis is only five years, that means finding a living donor may be the only viable option for some people, and white Coloradans are more likely to have heard about living donation, Giusti said.

While many of the patients in the Hispanic program initially don’t want to ask a family member to give them a kidney, most become more comfortable after they learn about the extensive screening process to determine the donor won’t be harmed, he said.

Colorado’s equitable donor pool

Colorado has a more equitable donor pool than many states. Jennifer Prinz, CEO of Donor Alliance, said the percentage of donors from most ethnic groups in Colorado tracks with the population, with the possible exception of Latinos, who made up about 22% of the population in 2021 but only about 17% of donors.

It’s less balanced, however, when comparing the population that’s waiting for an organ. Black Coloradans make up about 5% of both the general population and the pool of donors, but 11% of those waiting for an organ. About 23% of those on the waiting list are Latino, which is in line with their share of the population, but higher than their percentage of donors. The only group that makes up a higher percentage of donors than its share of the population is white Coloradans.

No one wants fewer white people to sign the donor registry — every organ, from a living or deceased donor, gives someone on the waiting list a chance at survival. But if people from a broad range of backgrounds sign up to donate, that not only increases the number of organs potentially available, but also improves the odds any given patient will have a well-matched donor.

The most important factors in matching donors and recipients are blood type, size and geographic proximity, Prinz said. But ideally, they’ll also have some of the same proteins on the outside of their cells, because the immune system is less likely to attack a tissue that’s close to itself. People whose ancestors came from the same part of the world are more likely to have similar proteins, so a diverse donor pool can help improve outcomes.

Donor Alliance employs a bilingual coordinator to increase outreach to Spanish-speaking populations, and has a partnership with the Mexican consulate to introduce immigrants to how donation works in the United States, Prinz said. It also conducts campaigns to encourage Black Coloradans to sign up as donors, sets up at events in medically underserved areas and participates in National Donor Sabbath day in religious communities, she said.

While Latinos are somewhat less likely than white residents to become donors in Colorado, both groups are more likely than Americans as a whole, Prinz said. About 67% of Coloradans and 63% of the state’s Latino residents opted to join the registry to donate organs after their death, compared to about 49% of people nationwide, she said.

“Clearly Coloradans support donation and transplantation,” she said.

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