Despite efforts over the past two decades to increase the number of black and Hispanic patients receiving kidney transplants from related or unrelated living donors, these racial/ethnic minority patients are still much less likely to undergo such transplants than white patients, Johns Hopkins researchers report. In fact, the investigators say, the disparities have worsened in the last 20 years.

The findings, published Jan. 2 in the Journal of the American Medical Association, are based on a study of 453,162 adult first-time kidney transplant candidates nationwide. Overall, the incidence of live donor kidney transplantation increased from 1995 to 2014 among white patients (from 7 percent to 11.4 percent) and among Asian patients (from 5.1 percent to 5.6 percent), but decreased over the same time period among black patients (from 3.4 percent to 2.9 percent) and Hispanic patients (from 6.8 percent to 5.9 percent).

“Best-case scenario, we would have thought that policies designed to increase live kidney donation would have helped narrow disparities,” says lead study author Tanjala Purnell, Ph.D., M.P.H., an assistant professor of surgery at the Johns Hopkins University School of Medicine with a joint faculty appointment at the Johns Hopkins Bloomberg School of Public Health. “Worst case, we would think that these population-level policies would not have an impact on disparities, but it is disappointing and surprising to find that the disparities have actually gotten much worse over the last two decades.”

For the study, Purnell and colleagues studied transplant candidates in the national Scientific Registry of Transplant Recipients from Jan. 1, 1995, to Dec. 31, 2014, with follow-up through Dec. 31, 2016. The registry includes data on all donors, candidates and recipients in the United States submitted by members of the Organ Procurement and Transplantation Network. Investigators categorized the data into five-year increments.        

Between 1995 and 1999, after adjusting for such demographic factors as age and gender, black and Asian patients were about half as likely as white patients, and Hispanic patients about 80 percent as likely as white patients, to receive a live donor kidney. Between 2010 and 2014, black patients were about a quarter as likely as white patients to receive a live donor kidney, while Hispanic patients were about half as likely and Asians were about 40 percent as likely.

Purnell says dozens of educational programs designed to address racial and ethnic disparities in live donor kidney transplantation were implemented within transplant centers or dialysis centers over the study period, focusing on increasing awareness of the benefits of transplantation and live donation and addressing concerns such as financial costs and potential clinical risks for kidney transplant patients and living donors.

In addition, she said, nearly all states now have some laws that provide economic support for donors, ranging from paid or unpaid leave from work to tax benefits.

Live donor kidney transplantation is associated with improved clinical outcomes and quality of life compared with kidneys received from deceased donors, says senior study author Dorry Segev, M.D., Ph.D., the Marjory K. and Thomas Pozefsky Professor and

associate vice chair of surgery at the Johns Hopkins University School of Medicine.

Previous studies from Segev have shown that live kidney donation is safe, can be from relatives or unrelated donors, and can even be from elderly donors or donors who are blood type or human leukocyte antigen incompatible with their recipients.

While the study did not specifically explore reasons why live donor transplant disparities have increased for minorities, diseases that would often make people ineligible to become a live donor—such as high blood pressure, diabetes and kidney disease—present a higher burden now than 20 years ago and disproportionately affect black and Hispanic populations, Purnell says.

Delays in the receipt of kidney care—owing in part to costs and lack of access to specialists among these populations—may also contribute to the quality and timing of patient-clinician discussions about live donor kidney transplantation as a treatment option, Purnell adds.

“We need to implement a national strategy that specifically targets a reduction in these disparities,” she says, a strategy that includes national dissemination of culturally appropriate educational materials, as well as development of online support communities and services that help patients navigate a complex health care system. Currently, such programs are more available at the local or medical center level, “so patients really are at the mercy of the resources available to them within their own clinics.”

Among the patients whose data were studied, the mean age was 50.9. Thirty-nine percent were women, 48 percent were white, 30 percent were black, 16 percent were Hispanic and 6 percent were Asian. Overall, 59,516 patients (13.1 percent) received a live donor kidney transplant during the study period. Of these, there were 39,509 transplants among white patients, 8,926 among black patients, 8,357 among Hispanic patients and 2,724 among Asian patients.

Currently, there are more than 700,000 patients in the United States who have been diagnosed with end-stage kidney disease.

Contributing authors were Xun Luo, Lisa A. Cooper, Allan B. Massie, Lauren M. Kucirka, Macey L. Henderson, Elisa J. Gordon, Deidra C. Crews and L. Ebony Boulware.

The study was supported by the Agency for Healthcare Research and Quality (grant K01HSO24600); the National Heart, Lung, and Blood Institute (grant K24HL083113); and the National Institute of Diabetes and Digestive and Kidney Diseases (grants K24DK101828, K01DK101677, F30DK095545, K01DK114388-01, R01DK104876, R03AI126090, K23DK097184 and R01DK098759).