Today in the U.S., nearly 100,000 people are waiting for a kidney. Another 600,000 have end-stage renal disease (ESRD) and live on dialysis—and as rates of obesity, diabetes, and hypertension rise and the Baby Boomer generation ages, that number is expected to hit 900,000 by 2030.
“These are the sickest of the sick,” says Heather Traino, associate professor of social and behavioral sciences. “If you have ESRD, transplantation is the best option for you.” But sadly, the supply of donated kidneys falls far short of demand. In an effort to increase the number and diversity of registered organ donors, Traino will use a $1.3 million grant from the Health Resources and Services Administration’s Division of Transplantation to study how community education might help.
Although more than 120 million people have signed a donor card, the Department of Health and Human Services reports that on average 22 people die each day for lack of a suitable donor organ. The keyword: “suitable.” The great majority of organ donors are younger and Caucasian. Yet of those awaiting a transplant, many are over 50, and about 65 percent are Hispanic or African American.
And it’s important to have diversity in donors. “The best matches are found when people are of the same ethnic background,” Traino says. “They’re more likely to have the same blood type and to have the same antigens, so rejection is less likely.”
Traino’s team will focus on Hispanic communities in Philadelphia, Chicago and San Antonio. The researchers will teach promotoras, educators who promote healthful behaviors in Hispanic communities, to share information about the importance of organ donation with Hispanic women ages 50 and over. Later, those promotoras will meet with small groups in the community to discuss the need for organs within the Hispanic community and promote organ donation. To evaluate the impact of the intervention, Traino’s team will track rates of donor registration among participants.
The study taps into the power of social influence. “Promotoras are already respected members of the community,” says Traino. “And, women tend to be the caretakers in the family. So the hope is that these women will communicate information about organ donation to members of their social networks”—and that more members of the Hispanic community will register to become organ donors.
As important as this work is, Traino acknowledges it’s a net at the end of a long stream of factors like lack of access to healthy, nutrient-dense foods and healthcare that contribute to kidney disease. “It’s all trickling down to the need for a kidney,” she says.
Until we fully address those issues, people will continue to need kidney transplants. And in the meantime, Traino knows that the effort to change attitudes about organ donation happens one person at a time. “I think we’re heading in the right direction, but it’s going to take a cultural shift,” Traino says. “We, as a society, need to recognize the benefits of organ donation—and put our full support behind it.”