Tuskegee Experiments' Legacy: Blacks Still Dying of Curable Diseases

Almost exactly seven years ago, on February 28, 2008, Penn State Assistant Track Coach, Fritz Spence, was diagnosed with acute myeloid leukemia (AML). Five months after his diagnosis, following Fritz's second failed round of chemotherapy, Wade Spence donated marrow to his brother. Statistically speaking, Fritz's odds were about 50/50 that he'd make it five years cancer free. 25 days shy of the five-year mark, Fritz relapsed.

Wade matched Fritz for all eight of the human leukocyte antigen (HLA) markers - the genetic markers that are used to determine suitability for a bone marrow transplant. Now Wades's cells appear to have matched too perfectly. The cancer that so readily plaqued Fritz, find's his brother's donated genetics equally hospitable.

Bone marrow transplants are unique from organ, bone or tissue transplants because the donor/recipient blood types don't matter. Marrow from a donor who is genetically close enough to a patient replaces that of the sick person and takes over making his or her blood. When someone has leukemia, it's the blood that's cancerous. After chemotherapy and/or radiation kill off a patient's disease bearing blood - and the marrow that created it - doctors use an IV drip to infuse the donor's marrow. The new cells find their way into the bones, take over production, and - in many cases - the patient is cured.

In Fritz's case, he needs a less close match: a donation from someone like him but not exactly like him. Fritz explains, "We're hoping for a female, unrelated, with seven out of eight markers." And while a cancer sufferer's chances are better than ever of finding a match through the National Marrow Donor Program's Be the Match Registry, Fritz's odds aren't as good as they should be, because he's black.

Be the Match Registry Community Engagement Representative, Aimee Haskew, has been working with Fritz trying to get more people, especially African-Americans, to come forward and be tested. Haskew says that the demand for marrow matching the tissue types for people of color is quite high - not just because of leukemia - but because it's the only treatment known to cure sickle cell anemia, a genetic blood disorder that is most common in persons of African descent.

So, for African-Americans, the need for marrow donors is high but only 7% of those screened are black. That's about half of what it should be if folks like Fritz are going to find the match they so desperately need.

Haskew says that there are many reasons individuals don't register, "They don't know how easy it is. There's no blood test, just a swab of the inside of a person's mouth. And they think it's going to hurt. But for about half the donations now, we can use a method similar to donating plasma, no surgery required."

Fritz agrees. People need to be educated about bone marrow transplants. Fritz recalls, "When I go on marrow drives and I talk to individuals they aren't aware of the process. A lot of what they understand they've heard from other people who haven't donated. They think the marrow comes from their hip or their spine, but in many cases they can just spin off T-cells."

But it's not just the pain of donating that keeps culturally diverse people from having the marrow screenings, Fritz explained, "Black people remember Tuskegee. There is a preconceived idea that the system can't be trusted..." Fritz has anecdotal evidence that a large percent of the people who vocalize some fear of donating to him, "speak of Tuskegee."

According to the Centers for Disease Control and Prevention, from 1932 until 1972, "the Public Health Service, working with the Tuskegee Institute, began a study to record the natural history of syphilis... The study initially involved 600 black men - 399 with syphilis, 201 who did not have the disease." During the study, none of the infected patients were ever told that they had syphilis, and even after 1947 - when penicillin became the standard cure - none of the patients were ever treated for the disease.

In the minds those who recount the Tuskegee experiments, government agencies as well as private medical practitioners share the blame for this unethical treatment of black test subjects. As late as 1969, the American Medical Association supported continuing the "Tuskegee Study of Untreated Syphilis in the Negro Male," even after unknowing men infected their wives and unknowing wives delivered babies with gestational syphilis.

On May 16, 1997, President Bill Clinton apologized to the victims, though only a handful of them were still alive to hear his words.

As Fritz considers the possibility of needing a new marrow donor he does so with a fair amount of bewilderment, "For me, I know a lot about it. So the fear frustrates me. It frustrates me that people don't want to do it just because they don't know how it really works."

Fritz doesn't let his angst stop him from organizing, even though he admits, "It's not that easy," to tackle ingrained suspicions or physical anxiety. Bone Marrow drives have been organized on his own Penn State campus and Fritz says he knows these campaigns are successful because, "My student athletes know me. I know they were afraid but they came forward because it was me."

Fritz believes that the best way to reach the African American community is to do home visits, similar to the March of Dimes door-to-door campaigns. Fritz says it will take outreach to churches, organizations and community groups in the neighborhoods where people of color live in order to overturn what Haskew describes as, "the effects of hundreds of years of history."

Still, Fritz wants everyone to know, regardless of ethnicity, "You could be the cure for somebody else. You could save a life."