It was during a road trip that Steven Robinson stopped to visit his former college roommate and noticed something was wrong. Richard Koonce had lost weight – evidence of the dwindling appetite and low energy that the 62-year-old had been experiencing for the past two years.

Koonce revealed that he had been struggling with primary sclerosing cholangitis, a disease that causes inflammation of the bile ducts, leading to cirrhosis. PSC ultimately can cause liver failure — unless the patient gets a liver transplant. 

The former Norfolk State University classmates realized that they had the same blood type. Thirty lab screenings, a heart stress test and an MRI scan later, Robinson became a living donor. He volunteered to give 60% of his liver to Koonce, and the friends went through the procedure last month.

“Everybody overwhelmingly said yes and if you’re a match, you should go for it,” said Robinson, 57. “It was never a question.”

Ultimately, Koonce’s body rejected Robinson’s liver. But because the procedure already had been done, Koonce was bumped up on the organ recipient waitlist. Six days later, he got a second liver, from a deceased donor. 

“If my friend hadn’t stepped up to be a living donor, I wouldn’t have had a transplant,” he said.

Koonce’s happy ending was a rare outcome for Black Americans. Despite being only 13% of the population, Black people make up nearly 30% of those waiting for a transplant, according to the U.S. Department of Health and Human Services. That proportion varies based on the needed organ: For kidney transplants, Black patients make up 32% of those waiting. For heart transplants, they make up about a quarter.

The overrepresentation is, in part, due to disparities in chronic conditions like hypertension and diabetes — both of which disproportionately impact Black people. They are almost four times more likely to suffer from kidney failure than white people. 

The longer wait times for transplants is exacerbated by the lack of matching donors. In addition to matching blood types, a patient’s body is more likely to accept an organ from a donor of the same ethnicity. 

“The problem is we don’t have that many African American donors,” said Marion Shuck, vice president of governmental relations and external affairs at Gift of Hope, an organ and tissue donor network. “When you don’t have information, when you have medical mistrust, when you’ve been mistreated by the health care system, it creates a problem.” 

Access to transplants is further hindered by the way race has been used in medical equations to assess organ function and the need for certain interventions. For example, in evaluating kidney function, medical professionals sometimes rely on algorithms that use a “race correction” that assumes Black patients have a higher level of creatinine — a byproduct made by muscles — in their blood. In some cases, that leads to estimates of kidney function that place Black patients lower on the list for transplants and interventions. 

A number of doctors and associations have spoken out against the race correction. Some institutions are removing them altogether. 

“Even within medicine, there’s racism,” said Velma Scantlebury-White, a retired surgeon who performed more than 2,000 transplants. “We have certain formulas and algorithms that often put patients at a disadvantage.”

Scantlebury-White earned her medical degree in 1981 and went on to become the first Black female transplant surgeon in the U.S. Her work focused on kidney transplants, where she felt like she could impact the Black community, and she has advocated for increasing Black living donors. 

She told her patients that if they could find a living donor, they could avoid dialysis, meaning potential for a better lifestyle and lower risk of death. She encouraged them to get friends and family involved in the process of finding a donor to increase the likelihood of finding a match. 

And when she spoke to healthy people, she talked about the importance of early diagnosis, emphasizing regular physicals as well as blood and urine tests. 

“Get a copy of your labs so you can see what’s normal and what’s abnormal. Know your numbers,” said Scantlebury-White, who retired from clinical work in 2020.

She now focuses on community education and mentorship, noting that bias persists not only for Black patients but transplant doctors, as well. During her more than 30 years as a surgeon, she found it was difficult for communities to accept her as their surgeon. Patients questioned her credentials. Nurses doubted her abilities.

Moments of self-doubt sometimes spiraled into depression, she said. Now, part of her mission is to increase diversity in her field. She tells her students they will hit a brick wall every now and then, but to not let others devalue them because they don’t see their potential. 

“We still have this leaky pipeline because of the inequities,” Scantlebury-White said of aspiring Black female surgeons. “It becomes an obligation for us to bring them along and for them to be prepared for the issues they will face.” 

She also feels an obligation to advocate for Black Americans to take ownership of their health care, particularly those with a history of conditions like high blood pressure or diabetes in their families. She encourages patients to remind their doctors about that history and to keep track of their blood-test results.

An awareness of his body, and a lot of reading, helped Koonce advocate for better health care. As he lost weight and energy, his doctor misdiagnosed him. 

“Everything I read told me it wasn’t Crohn’s disease,” said Koonce, a college prep director in Ohio. He went vegan and started to feel better but realized his Crohn’s prescription was only masking the real problems. 

He switched doctors and finally got an accurate diagnosis. His process of looking for a living donor or waiting for a deceased one began.

In 2021, the number of organ transplants crossed 41,000, a record number. More than 9,000 were for Black patients. The goal among organ procurement organizations nationwide is to reach 50,000 total transplants by 2026.

Most people think being an organ donor is good, said Shuck, but when it comes to moving forward with getting tested for a living donation or registering to be a deceased donor, hesitancy arises. 

Shuck said she often has to debunk myths when she’s engaging with the community. She explains that having a preexisting condition does not necessarily preclude you from donating organs and that being registered as an organ donor does not mean you will receive subpar treatment from emergency responders or doctors.

She often asks: “If you had the opportunity, would you save someone else’s life?”

Margo Snipe is a health reporter at Capital B. Twitter @margoasnipe