Twenty years ago, we had an idea at the Minority Organ Tissue Transplant Education Program (MOTTEP): let’s set aside a day to educate the public about the great need for minority organ and tissue donors.
National Minority Awareness Day has since become National Minority Awareness Week, and we observe it the first week of August every year. This special observance honors minorities who have been donors, and encourages others to register as donors and take better care of their health in order to reduce the number needing a transplant. The number one problem in transplantation remains the shortage of organs.
Back in 1996, 46,000 people were on the national transplant waiting list. That number has now reached over 121,000. Of that number, more than 100,000 persons are awaiting a kidney transplant and of these, more than 68,000 are members of racial and ethnic minorities. Minorities have higher rates of kidney disease and kidney failure.
More than 20 people die each day waiting for a transplant because there are simply not enough organ donors. But there is some good news.
We work continuously with organ procurement organizations (organizations that obtain deceased and donor organs) and have seen minority donation rates double from 15 percent to 31 percent over the last 15 years. Our goal for 2016 is to reach 35 percent. Working together, we can reach this goal by promoting the positive messages that will enable members of the minority community to make informed decisions to become organ and tissue donors.
Four frequently asked questions:
1) Why are so many minority individuals on the waiting list for kidneys?
African Americans, Asians and Pacific Islanders, and Hispanics/Latinos are three times more likely than Caucasians to suffer from end-stage renal disease (kidney failure), often as the result of high blood pressure and other conditions such as diabetes that can damage the kidneys. Recently, a link has been discovered between certain genetic factors and kidney disease among African Americans. Specifically, a mutation (or abnormality) in the APOL1 gene is thought to cause up to 40 percent of kidney failure cases among African Americans.
As a result of these factors, almost 34 percent of the more than 101,000 people on the national waiting list for a kidney transplant are African American and about 20 percent are Hispanic/Latino.
2) Do kidney donors and recipients have to be the same race?
Although organs are not matched according to race/ethnicity, and people of different races frequently match one another, all individuals waiting for an organ transplant will have a better chance of receiving one if there are large numbers of donors from their racial/ethnic background. This is because compatible blood types and tissue markers—very important qualities for donor/recipient matching—are more likely to be found among members of the same ethnicity. A greater diversity of donors may potentially increase access to transplantation for everyone.
3) Is there a difference between a kidney from a living donor or a deceased donor?
While patient survival rates are similar, live donor kidneys survive much longer than deceased donor kidneys after transplantation, probably because of a shorter period in which the circulation of blood is cut off for the live donor kidney.
4) What if I donate a kidney and later need a kidney transplant?
The United Network for Organ Sharing, the agency that coordinates U.S. transplant activities, now allows for kidney donors who later need a kidney transplant to jump to the top of the transplant waiting list, guaranteeing them priority when a compatible donor is found.
5) What can I do during National Minority Donor Awareness Week?
During National Minority Donor Awareness Week, we are urging minorities to register to become an organ/tissue donors; sign up when you renew your driver’s license or on your state registry; have a family discussion and share your desire to become an organ /tissue donor in life or after death; and open doors to your church, social or community group so that we can discuss how to live healthier lives and how we can help others by the donation of organs and or tissues in life and after death.
Clive O. Callender, MD
Professor of Surgery, Howard University
Founder and President, National Minority Organ Tissue Transplant Education Program (MOTTEP)
Editor's note: Dr. Callender is the featured presenter at the American Kidney Fund's free webinar on improving access to transplant among minorities on Aug. 30 at 1 p.m. EDT. Register here.