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By Thomas Goldsmith

The need for increasing blood donations by African Americans grew into a cause for Sherry Johnson as she saw sickle cell disease threaten the health and lives of her daughters Jordan, Krista and Brianna.

Then, in December, Jordan, 14, died of complications from the disease, a genetic blood disorder which disproportionately affects African Americans.

Sherry Johnson, the Durham mother of three daughters with sickle-cell disease, urges increased blood donations by African Americans at a Red Cross event June 11. Photograph: Thomas Goldsmith

At a Red Cross blood diversity event June 11 in Durham, Johnson spoke strongly about the need for members of minority groups to donate blood. She also spoke, more softly, about what Jordan’s years of monthly transfusions had meant for the girl.

“She was able to have an active life — she loved volleyball; she loved softball,” Johnson told a gathering that included U.S. Rep. G.W. Butterfield (D-NC), Red Cross officials and representatives of hospitals, as well as academics, donors, volunteers and journalists.

Treatment including transfusions and a blood-marrow transplant meant that Jordan was able to be like her friends and enjoy life despite her condition, said her mother, who appeared in a video urging blood donations at North Carolina Central University.

Regular transfusions for people with sickle cell disease have been shown to reduce deaths from strokes and other effects of the disease. However, transfusions can cause an unwanted immune response known as alloimmunization unless blood phenotypes are carefully matched based on genetic background.

“The best donor match for sickle cell patients will likely come from a blood donor of the same ethnic group,” Butterfield said.

Reasons for a lag

As a population, African Americans have historically donated blood at far lower rates than white United States residents. Reasons for the lower rate include cultural distrust or trauma dating back to events such as the horrific Tuskegee experiments, in which researchers intentionally withheld treatment from black men with syphilis, even after penicillin emerged as an established cure.

U.S. Rep. G.K. Butterfield, a North Carolina Democrat, addresses the need for more blood donations by African Americans at a June 11 Red Cross event. Photograph: Thomas Goldsmith

“The African-American community has a lot of historical trauma and we have to respect that,” said Vincent Edwards, executive director of biomedical services for the American Red Cross, specifically citing the specter of Tuskegee.

Dr. Yvette Marie Miller, executive medical officer for American Red Cross Biomedical Services, noted that the Red Cross segregated donors – and blood donations – during World War II and beyond. Black donors were either turned away or had their blood stored with that of other people of color.

“And it was not until the late 1960s and early 1970s that Southern states such as Arkansas and Louisiana overturned similar requirements,” according to information accompanying a PBS documentary on the practice.

Miller, long a practicing physician, also talked about the specifics of sickle cell disease. The red blood cells in such patients take on abnormal shapes that resemble the farm tool that gives the disease its name, she said.

“As the cells start to sickle they stick to the side of the blood vessel and actually clog the blood vessel,” Miller said.

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Strokes caused by the disease typically happen to children and older adults. In young children, sickle cell disease can require transfusions in the first six months of life, Miller said.

“A single patient can receive up to 100 units of blood a year,” she said.

“The tiniest veins”

Sherry Johnson, the mother of daughters with the disease, declared that reasons for not donating, such as having small veins, were not acceptable.

“I have the tiniest veins and I donate,” she said.

Johnson declared another excuse to be out of limits.

“You hear people say all the time, I don’t like needles,” she said. “But if you can get a tattoo, you can roll up your sleeve and donate a unit of blood.”

Edwards said that despite his position with the Red Cross, he went for years without finding out whether he was a genetic match for a child with sickle cell disease, another act urged by people concerned about the disease. That changed in 2010, when he was tested and became a donor for a child with the disease.

“Even if it’s something you believe in, if you don’t take an hour to donate, you’re not having an impact,” he said.

Correction: Sherry Johnson was originally named as Sherry Miller. The story has been corrected to reflect her correct name.

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Thomas Goldsmith

Thomas Goldsmith worked in daily newspapers for 33 years before joining North Carolina Health News. Goldsmith is a native Tar Heel who attended the UNC-Chapel Hill, and worked at newspapers in Tennessee...