Jo Ann Orr really wants African-Americans to donate blood.

Her son died 16 years ago, when he was 32, of sickle cell disease.

When Orr’s son was born in 1968, doctors gave him five years to live. But because of medical technology and many, many blood transfusions, he lived.

Sickle cell is a genetic blood disorder where blood cells stick together because of their shape and block blood vessels. This causes extreme swelling and can be deadly if new blood isn’t brought in.

Orr knows how having similar genes and phenotype affected her son’s life.

“If you’re African-American or white, it makes a difference which way that blood comes from. I don’t think most people realize the difference,” Orr said. “Over the long haul, if you’re getting blood on a regular basis, it’ll be so much easier to use blood from the same race.”

One in 12 African-Americans have the gene that carries sickle cell, and one in every 400 African-American babies are born with it. Parents who each have the trait have a one in four chance of having a baby with sickle cell disease.

Testing for sickle cell disease is a big issue for Jason Whitehead. The Louisvillian has two daughters – ages 9 and 15 – who both carry the sickle cell gene from him. He’s currently in the hospital from complications of the disease.

“I tell them, when they get older, make sure the boyfriend they’re with doesn’t have the trait of sickle cell.  Because if he does, the baby will come out like your daddy,” Whitehead said. “You’re going to watch that baby suffer all the time. I’m highly for having protection and letting them know. Because this sickle cell, it’s very, very painful. “

Despite the prominence of sickle cell disease, African-Americans are half as likely as whites to donate blood. Part of the reason is that only 39 percent of African-Americans are eligible to donate, which compares with 48 percent of Hispanics and half of whites. That’s because people with sickle cell disease, hypertension, diabetes and anemia are barred from donating, and there are higher shares of African-Americans with these conditions, according to the New York Blood Center.

Another reason is mistrust of the science and health care community. And for good reason. An African-American woman named Henrietta Lacks had her cancer cells used for research decades after her death, without her consent before death or that of her family. In 2010, scientists used her cells for the human genome project, and without the permission of her family.

Before that was a drug treatment experiment on African-American men in the 1930s. The men were told they were being treated for syphilis. But they never got treatment. Funding ran out and the men weren’t told, nor were they told they had the disease or given penicillin when it emerged as a treatment.

Sarah Gehlert, a professor of racial and ethnic diversity at Washington University in St. Louis, Missouri, said these experiences have informed African-American communities nationwide.

“Individual African-Americans make decisions about whether to participate in research or give blood according to the history of their communities,” Gehlert said. “There’s a lot of mistrust.”

Orr estimates based on national numbers that there are between 1,300 and 1,500 people in Kentucky with sickle cell disease. It’s been such a problem that in 1972, the Kentucky Sickle Cell Disease Detection Act was approved to require all newborn African-American babies and African-Americans applying for marriage licenses to be tested for Sickle Cell Anemia.

It was met with criticism for targeting a specific group of people. In 1974, the testing of newborns and marriage applicants was repealed. There are, however, federal and state programs to fund screening today.

September is Sickle Cell Awareness Month. The Sickle Cell Association of Kentuckiana and the Louisville Urban League are partnering for a blood drive on Wednesday, Sept. 28 from 1-7 p.m. at St. Augustine Catholic Church, 1310 W. Broadway.


Lisa Gillespie is WFPL's Health and Innovation Reporter.