Dr. Kim Ramsey-White’s husband needs a new heart.
Realizing that has been the easy part. What comes next isn’t so simple.
For the last three years, Frank White has been trying to get on the list for a heart transplant. He received his diagnosis of advanced heart failure in March 2015—on the couple’s 25th wedding anniversary. Since then, he’s been undergoing a battery of tests and addressing other health issues to make him eligible to be on the transplant list.
When he does get on the list, “they told us that the average wait time is anywhere from six months to a year for a heart,” Ramsey-White said.
A big reason for the wait is the demand for donated organs far outweighs the supply. There are more than 116,000 men, women and children awaiting organ transplants in the United States, but the number of transplants each year is less than a third of that number, according to the most recent statistics from the U.S. Department of Health and Human Services (HHS).
What’s even more worrisome to Ramsey-White, her husband, their children and grandchildren is the knowledge that each year his chances of receiving a new heart become slimmer as the number of people on transplant waiting lists grows faster than the number of registered donors. HHS estimates that 20 people on the waiting lists die in the U.S. die each day due to the shortage.
While they wait, Ramsey-White and her husband have embarked on a mission to raise awareness and educate others about the need for organ and tissue donation.
“We wanted to start a conversation,” said Ramsey-White, clinical assistant professor of health promotion and behavior at the School of Public Health. “In the same way we have conversations about why you shouldn’t smoke or do drugs, or why you need to get tested for HIV.”
The couple has begun a public awareness campaign at Georgia State University, where Ramsey-White teaches undergrads and graduate students about health disparities. She is working with Donate Life Georgia—a nonprofit supporting organ donor registration and education—and Georgia State Student Health Promotion to focus on raising awareness, especially among young people and minorities, and teach them how to sign up as donors.
“One of the reasons for the focus of our campaign is that there is such a large number of minorities on the transplant list but they are among the lowest percentage of donors,” she said.
Nearly 30 percent of people waiting for organs are African American—like White—but African Americans make up only 15.7 percent of donors, according to HHS.
“I think there are so many myths around organ donation that people just believe in and haven’t done research on,” Ramsey-White said.
She said she thinks another reason for the low number of minority donors is longstanding mistrust of medical authorities created by historical mistreatment, such as the notorious Tuskegee study in Alabama, which monitored black men with syphilis for years without providing the medical treatment the men thought they would receive.
“And I don’t think you see a lot of minorities who are present and out there saying, ‘Hey! Donate life!’ she added.
The campaign so far has included donor registration drives on campus and at sporting events, as well as a video detailing Frank White’s experiences.
“If you’re on a journey and you can help other people become aware and have knowledge along the way, then I think you have a responsibility to do that,” Ramsey-White said. “If watching us go through the process and seeing how it impacts our family can help other people to become donors and take care of their bodies, then our living is not in vain.”
Register to become a donor at Donate Life Georgia.