Monday, February 1, 2010

Remembering Tuskegee

Last week, Jackie advocated for the need to include more minorities in clinical trial research. In the African American community, there is a specific apprehension to take part in clinical research. For many African Americans, the Syphilis Study in Macon County, Alabama heightened longstanding suspicions of the U.S. health care system.

Even after more than 25 years from the ending of the study, apprehensions still linger. There are many Black Americans that refuse to participate in clinical trials, donate blood and even refuse basic medical care. Why is this? To understand, we need to look at minority involvement from a historical prospective.

From the years 1932 to 1972, 600 men (399 with syphilis and 201 without) were recruited from Macon County, Alabama to observe how the disease affected Black patients as opposed to White patients. The principal investigators (Taliaferro Clark, Oliver Wenger, Raymond Vonderler, John Heller and Eugene Dibble) theorized that Black patients were more susceptible to cardiovascular damage from the syphilis; whereas white patients suffered more neurological impairments. Data was collected on the natural course of the disease through physical exams and routine checkups.

That doesn’t seem so bad, right? Well, at the time, it wasn’t. Treatments for syphilis during the 1930s were poisonous and often not effective. However, as time progressed, the ethics of the study came into question. The Macon County community was aware of the study that was being conducted.

The men, for the most part, were sharecroppers in one of the poorest parts of Alabama, and were not told of the seriousness of their disease. Instead, they were just told that they had “bad blood”. In exchange for their participation in the study, the participants were provided medical treatment for minor illnesses from “government doctors”, burial insurance (provided that they agreed to autopsy before they were buried), free hot meals during clinic visits and transportation to and from the hospital.

By 1947, penicillin was approved as a clinically effective treatment for syphilis. Instead of terminating the study and providing treatment, the principle investigators in the Tuskegee Experiment continued their work, blocking their patients from taking penicillin. Patients that questioned the fact that they were not receiving any therapeutic treatment were warned of the “dangers” of penicillin. In other cases, patients were assuaged by placebos in order for the researchers to continue their study on the progression of the disease.

No one questioned the ethics of the study until Peter Buxtun, a venereal disease researcher for the US Public Health Service, sent a letter to the national director of the Division of Venereal Diseases. The CDC reaffirmed the study’s significance and ensured that it went to completion. The National Medical Association (representing African American physicians) and the American Medical Association backed the CDC’s statement.

In spite of the opposition, Buxtun went to the Washington Star with the story and the following day it became front page news in the New York Times. Senator Edward Kennedy called congressional hearings and from there, the CDC and the PHS were required to terminate the study in Tuskegee.

After 40 years of mistreatment, the PHS finally ended their study in 1972, after constant and negative publicity. At its conclusion, only 74 of the test subjects were alive; 28 of the original 399 men died of syphilis, 100 died of related complications, 40 of their wives were infected and 19 children were born with congenital syphilis.

Check back tomorrow for the continuation of this post.

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