Spreading the word

Advocates are trying to increase organ donation among African-Americans

Health and Religion


Hours after their son's death June 21, 1995, the parents of 25-year-old Randolph Scott Jr. made the daunting decision to donate their son's organs.

The choice, a rarity in the African-American community, was prompted by their son's forethought to become a donor.

"Scottie," as they called him, had registered to become a potential donor by indicating it on his driver's license.

"Not only did we know that it was what he wanted, but since we did we agreed very quickly that it was the right thing to do to save someone else's life," says Robin Williams, Scott's mother.

Being able to donate Scott's organs "has been a blessing for our family," says Scott's sister, Monica Sheppard, a Baltimore County resident. "His loss was tragic and it was sudden and it surprised all of us, but we absolutely were given a sense of peace, being that he was able to help so many different people. We just thought that was an awesome gift!"

Scott's kidneys, lungs, heart, liver and pancreas were donated and transplanted into six recipients, the family said.

"We would encourage everyone to discuss donation and designate themselves as a donor on their license like Scottie did. Just like in his case, it could help save lives," Sheppard says.

Today, Scott's immediate family members are all registered donors.

Donors needed

Despite cases like this one, the African-American community has a deficient number of donors, representing about 11 percent of organ donors nationwide, say officials with the Organ Donation and Procurement Network.

As of March, the waiting list for people needing organs in Maryland was 2,334, officials said. Of that number, 943 were black.

The national waiting list consists of 97,448 people, 26,378 of whom are black.

"African-Americans do not donate at the proper rates that are needed in the community and therefore we tend to be on the waiting list longer because the pool of available donors is so much smaller, and because of DNA issues and matching. Organs tend to work better when they come from someone like you," says James Merritt, community relations manager at the Transplant Resource Center of Maryland.

There are fewer transplants done in the black community compared with other groups. As a result, African-Americans needing transplants languish on waiting lists approximately two years longer than their white counterparts, officials say.

"We need to increase the number of people who are willing to become donors," says Dr. Keith Melancon, assistant professor and director of kidney and pancreas transplants at Johns Hopkins Medicine.

Organs, namely the kidneys (of which human beings have two and only need one), can be donated by living donors such as a family member.

The organs that can be donated posthumously are the heart, lungs, liver, intestines, pancreas and kidneys. Donatable tissues include skin, bones, bone marrow, joints, connective tissue, the inner ear, heart valves, tendons, corneas and cartilage.

"So while organ donations save lives, tissue donations improve life for so many people. One donor can save up to eight lives, but can improve hundreds of lives through tissue donations," Merritt says.

Mistrust of doctors

Regardless of known advantages, there continues to be a stigma in the black community about organ and tissue donations.

Some attribute the African-American community's general mistrust of doctors to the days when the medical community used blacks as laboratory specimens rather than treatable patients

"This distrust of the medical establishment goes all the way back to things that have been done in the past, certain types of research, including the Tuskegee experiments with destitute blacks and syphilis," says Melancon, referring to an experiment that began in the 1930s.

"When I go out and talk to groups I witness a lot of fear, some of which is justified because of the disparities in health care that African-Americans often face," Merritt says. "We all know about the quality of treatment African Americans get, the price of health care, and things like that, so in general there's a distrust of health care by African-Americans," he says. "Couple that with the current racial issues in the country [and] African-Americans just don't necessarily think they're going to get the highest quality of care when it comes to organ donation, and they don't donate."

The medical community has launched an awareness campaign to get the message out that African-American donors are needed.

It also uses organ recipients such as Robin Griffin of Essex.

"Look at me," says Griffin, a liver recipient and hepatitis survivor of 18 years. "I'm a living example that organ donation works. I probably wouldn't have reached my 40th birthday if someone hadn't decided that they were going to give a part of their loved one to help someone else."

Griffin volunteers with the Transplant Resource Center and speaks on the topic of donation with various groups, usually African-American.

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