Is Enough Being Done to Reduce Kidney Transplantation Disparities?

The National Institutes of Health (NIH) aims to reduce disparities that exist in organ transplantation, specifically with kidney transplants, according to a recent NIH news release.  Recent news articles have emphasized the lack of an effective nationwide kidney transplant registry, and NIH’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) hopes that several new initiatives will bring organs to those patients that need them most.

According to the NIH news release, African-Americans, Hispanics, and American Indians, while more affected by kidney failure, are less likely to receive organ transplants.  Twenty million American adults suffer from chronic kidney disease, with 400,000 of them currently treating kidney failure through dialysis.  Although African-Americans and Hispanics make up only 13  and 16 percent of the population, respectively, of the 80,000 people on the national registry for a kidney transplant, 35 percent are African-American and 19 percent are Hispanic.

A recent New York Times (NYT) article cites a number of reasons that African-Americans are underrepresented on donor lists and overrepresented on waiting lists: “lower incomes, lower rates of insurance coverage and less access to high-level care; fewer suitable donors because of the prevalence of diabetes and hypertension; and perhaps a cultural reluctance to ask family members to donate.”

NIH used the platform of World Kidney Day on March 8 to announce NIDDK’s initiatives.  According to NIDDK’s director, Griffin P. Rodgers, M.D., the solution to the disparity is two-fold: (1) “ensure that providers refer appropriate patient for transplant evaluation as soon as they’ve been diagnosed with kidney failure,” and (2) encourage “more African-Americans and Hispanics [to] register as organ donors and talk with loved ones about doing the same to increase the pool of kidneys available for transplantation.”

Some of the initiatives touted by NIDDK are:

  • the Minority Organ and Tissue Donation Program, a collaboration between NIDDK and NIH’s National Institute on Minority Health and Health and Health Disparities, which funds research on these disparities to organ organ access;
  • NIH’s National Kidney Disease Education Program (NKDEP) which helps health professionals to educate at-risk populations about kidney failure treatments;
  • NKDEP’s national faith-based outreach program, called Kidney Sundays, under which African-American faith organizations will teach parishioners about kidney disease risk factors and how to get tested, and Family Reunion Initiative, providing families resources to talk about kidney health; and
  • the Kidney Interagency Coordinating Committee, a collaboration of federal agencies aimed at providing a multi-faceted response to kidney disease and ultimately make efforts to reduce disparities more successful.

For some, the lack of a prevailing national registry is to blame for those needing kidneys not getting them.  The NYT article claimed that, to maximize the number of transplants occurring through paired exchanges, a single, nationwide registry is needed.  Although the federal government started a paired exchange pilot program in 2010, only 17 transplants have occurred since late 2010, while the nonprofit National Kidney Registry had 175 transplants in 2011 alone.  There are a number of registries operating, however, which have little government oversight and, according to Dr. Sandy Feng, a transplant surgeon at the University of California, San Francisco, the registries do not follow the same policies on how organs are distributed.

The problem pointed out in the NYT article is not addressed by the new NIH initiatives.  Perhaps more attention should be placed on establishing a centralized registry system rather than simply educating the population about kidney disease as the NIH initiatives seem to do.  What do you think?