By: Jackie Jones, BlackAmericaWeb.com
Each day, 18-20 people die waiting for an organ or tissue transplant. Half of them are waiting for an organ transplant as a result of high blood pressure, diabetes, obesity, kidney or heard disease or hepatits -- all things that disproportionately affect the black community.
Medical experts are encouraging people to use Wednesday, Aug. 1 -- National Minority Donor Awareness Day -- to sign up to become organ donors and for the bone marrow registry. Bone marrow transplants have been heralded for helping people recover from a number of diseases, including leukemia and aplastic anemia.
Barton M. Wiggins is waiting for a bone marrow transplant, hoping it will cure his leukemia.
The Washington, D.C. area man said in a recent television interview he woke up on Father’s Day four years ago feeling poorly. A trip to the doctor’s office resulted in the diagnosis of the blood cancer.
“I’ve been on the list for four years on the National Marrow Donor Center database,” said Wiggins, who also spent a year and a half in a treatment program at Johns Hopkins University hospital.
Johns Hopkins is the same hospital that is treating Effi Barry, an ex-wife of former D.C. Mayor Marion Barry, who is in a clinical trial to treat a recurrence of leukemia. Doctors have been unable to find a match for Barry, and she told BlackAmericaWeb.com in a recent interview that she has been told she didn’t have time to wait for a match and chose to undergo the rare treatment rather than undergo another round of chemotherapy. Researchers say chemotherapy is a less effective treatment for blood cancers when they reoccur.
While family members may be able to help with organ donations, a larger net must be cast to pull in possible bone marrow matches. A match is more likely to be found within one’s own racial or ethnic group.
And while black Americans have increasingly been more willing to sign up as organ and bone marrow donors, the need outstrips the pace at which they are signing up.
Dr, Clive O. Callendar, founder of the National Minority Organ Tissue Transplant Education Program, said everyone gets three transplant markers from their mothers and three from their fathers. For an organ transplant, he said, you need to match only three of the six markers. For a bone marrow transplant, all six must match.
Callender founded the organization in 1991, although he began laying the groundwork in 1978, according to MOTTEP’s Web site.
According to the site, members of the Southeastern Organ Procurement Foundation consulted with Callender to determine why minorities, especially black Americans, were reluctant to donate organs. At the time, blacks had less than a five percent donation rate, but represented 50 to 75 percent of those undergoing dialysis.
Increasing the number of potential donors is critical for black Americans and other people of color, Callendar said in the television interview.
In an earlier interview with BlackAmericaWeb.com, Callendar said that when he began working in the area of organ transplants, there were eight African-American donors per 1 million people. Today, there are more than 40 per million.
About 10 years ago, minorities made up 15 percent of donors. Today, they make up about 30 percent of donors.
Still, Callendar said in the TV interview, “The only race minorities are winning is the race from the cradle to the grave,” adding that the lifestyle of many black Americans have contributed to their health problems, as well as their inability or unwillingness to become donors.
“First, you have to love yourself and take care of yourself,” Callendar said. “Absolutely, yes -- lifestyle is a factor. The food we eat, our environment, our lack of exercise. Push back from the table. Exercise at least five days a week for at least 30 minutes. Eat less fried food.”
Additionally, he said, black Americans suffer from a lack of information, religious myths and misperceptions about transplantation, a fear that they will be used as “guinea pigs” for scientific experimentation, a fear that doctors are more interested in getting the tissue or organ than in the patients’ care and a concern that their organs and tissues would be used to help whites in preference to black people.
Those concerns can be addressed by grassroots education forums, in which a medical professional, a donor and a recipient can answer questions and dispel concerns.
On Aug. 1, 2006, in recognition of National Minority Donor Awareness Day, the D.C. Council approved the creation of a donor registry that allows prospective donors to call the Department of Motor Vehicles or link to a Web site and sign up.
The Organ and Tissue Donor Registry Establishment Act established a centralized donor registration database, which authorizes the District’s Department of Motor Vehicles to regularly transfer organ and tissue donor information to the Washington Regional Transplant Consortium. The aim is to provide accurate and timely data about patients and potential donors to area hospitals.
“That is a major advance,” Callender told BlackAmericaWeb.com at the time. “Things like this and other things that allow people to become more aware of the need for donations of blood, organs and marrow -- in life as well as after death -- are important.”
Callender said similar efforts were underway in a number of MOTTEP chapter cities, including Chicago and Philadelphia. National MOTTEP has 16 sites around the country. The national office has been headquartered at Howard University Hospital since 1993.