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60% of people waiting for organ transplants are people of color. Advocates urge more to donate

Charlene Johnson-Boyd shared her story as a heart transplant recipient at an event hosted by Transplant House of Cleveland in Cleveland Heights on Aug. 30, 2023.
Taylor Wizner
Ideastream Public Media
Charlene Johnson-Boyd shared her story as a heart transplant recipient at an event hosted by Transplant House of Cleveland in Cleveland Heights on Aug. 30, 2023.

Organ donation recipients, their families and advocates gathered Wednesday to share personal stories and stressed the importance of organ donation — especially for members of racial minorities at an event in Cleveland Heights hosted by the Transplant House of Cleveland.

That's because the majority of people waiting for life-saving organs are people of color, like Charlene Johnson-Boyd, a 74-year-old Cleveland resident who went to the hospital because it was becoming difficult for her to climb the stairs.

She was diagnosed with a heart condition and immediately put on a transplant list.

Eleven months later, she received a heart from a 28-year-old woman who died in a tragic accident.

“Every time I go in for my checkups or anything, they listen to my heart and go, 'Woo, you have a strong beating heart in here.' And I say, 'Yes, I plan to really take good care of it.' And I promise her every morning that that's what I'm going to do," Johnson-Boyd said.

Johnson-Boyd has seen both sides of donation — she said her father donated his corneas after he died.

People should talk about their wishes for organ donation with their families, she said.

Advocates hope others will do just that amid record numbers of transplants and persistent barriers to access and care within minority communities.

Sixty percent of people awaiting a life-saving organ transplant in the U.S. are persons of color, according to Transplant House. Of those 62,345 individuals, 453 are located in Northeast Ohio, according to the Organ Procurement and Transplantation Network.

Race isn’t always a factor when matching transplant donors and recipients, but advocates said increasing registered donors within minority communities helps the overall impact.

“Twenty people die every day because they do not get the organ they need, and that’s 20 people too many,” Gordon Bowen, CEO of Lifebanc, said in a media release issued by Transplant House of Cleveland.

A record 42,887 organ transplants were performed last year, while deceased organ donations set a record for the 12th consecutive year in 2022, Transplant House of Cleveland said. Still, there were 113,692 registrations on the national transplant waiting list as of Aug. 30, with another person added to the list every 10 minutes. Of those, kidney transplants are needed most with a waiting list of 95,858 based on OPTN data.

Transplant House of Cleveland added that the number of kidney donations needed by people of color exceeded 25,000 for the first time last year. There were 25,500 kidney transplants performed in 2022 and 15,927 so far this year.

Ohio recorded 2,127 transplants in 2022, according to OPTN. Of those, 1,563 recipients were white. This year, the state has seen 1,411 transplants, 1,046 of which were among white recipients.

Though African Americans make up a significant portion of the waitlist, a smaller share of Black people are organ donors due to distrust of the medical establishment and often misconceptions, said Cleveland Minority Organ and Tissue Transplant Education Program’s Linda Kimble.

“When the doctor is working for you, he doesn't know that you are an organ donor," Kimble explained. "He's trying to save your life. He took the oath to save your life. He's not going to think, well, I'm not going to save their life because they could be or they could save somebody's life. Why would he do that?”

People who have diabetes or other medical conditions are disqualified from donation, and Black people are disproportionately affected.

Kimble, who spoke at the Cleveland Heights event Wednesday, aims to raise awareness among minorities to become organ donors. She said that’s especially important because some tissues and organs are more likely to be a match if they are the same race.

Access also remains an issue for minority groups, as lack of quality care throughout the transplant journey disproportionately affects minority communities, according to Transplant House of Cleveland. The release noted that improving outcomes for transplant patients in minority communities can be achieved by providing them with the tools needed to make informed decisions. More attention should also be given to the social factors that limit access to health care and disease management, the release added.

“We are committed to greater equity and access to organ transplant for all individuals, regardless of racial background, religious identification, sexual orientation or socioeconomic status,” Transplant House of Cleveland Executive Director Elaine Turley said in a media statement. “No one should have to face the transplant journey on their own.”

Turley added that access to hospitals and caregivers in underserved areas remains a problem, and that some people in Northeast Ohio’s Black community also face transportation challenges, even if they live relatively near a hospital.

Transplant House of Cleveland, in collaboration with Lifebanc and Cleveland Minority Organ and Tissue Transplant Education Program, hosted Wednesday's event at its satellite campus in Cleveland Heights. The organization provides housing and support to transplant patients and their caregivers.

Stephanie Metzger-Lawrence is a digital producer for the engaged journalism team at Ideastream Public Media.
Taylor Wizner is a health reporter with Ideastream Public Media.