Dr. Bill Jenkins devoted most of his professional life to addressing racism in health care. While he had many accomplishments over the course of his extraordinary career, he was best known for trying to put an end to the Tuskegee Experiment, an unethical study conducted on black men by the U.S. government in order to learn the effects of syphilis on the human body. Jenkins died in Charleston, South Carolina, on Feb. 17 at the age of 73.
Jenkins was employed at the United States Public Health Service as a statistician when he learned about the study. The federal government had intentionally lied to hundreds of black men in Macon, Alabama, about treating their “bad blood,” a term used locally to describe a variety of illnesses. The men, many of whom had syphilis, were initially recruited under the belief that they were receiving free medical treatment at the Tuskegee Institute. Most of them were sharecroppers who had never before seen a doctor. The men were never informed of the experiment which denied them treatment for their condition, even as they suffered blindness, illness, brain damage, and death—even though penicillin became the recommended treatment for syphilis in 1947. The study lasted 40 years, from 1932 to 1972. In that time, some of the infected men passed the disease on to their wives, some of whom subsequently passed it on to their children.
The New York Times describes Jenkins’ quest to halt the study. He was first told of it by a colleague, and proceeded to do research on it. He found numerous articles about it in medical journals and even found that local chapters of the American Medical Association (AMA) supported it. Jenkins took his concerns to his then-supervisor who told him, “Don’t worry about it.” He later discovered that same supervisor was a monitor of the study.
Jenkins and some of his colleagues then wrote about the study and sent the article to several black doctors and reporters. However, the story was never picked up. It wasn’t until later that another employee at the health service sent the information to the Associated Press (AP). The AP story made the front page of The New York Times and soon after, the study was stopped.
Learning about the study informed Jenkins’ choice to become an advocate in his medical career.
“The study confirmed what he had long believed—that medical research was biased against people of color and that this study was just the tip of the iceberg.” Jenkins proceeded to tackle racial bias in medicine in many ways, one of which was to try to recruit more people of color into the field of public health. After the study, he earned two master’s degrees, one in biostatistics and the other in public health, and earned a doctorate in epidemiology in 1983.
He went on to work at the Centers for Disease Control and Prevention (CDC), where he was one of the first researchers to recognize the disproportionate ways that AIDS was impacting black men. Later, he became the CDC’s director of minority AIDS prevention. He was also the founder of the Society for the Analysis of African American Public Health Issues, which seeks to eliminate racial health disparities. Its also fitting that for 10 years, he managed the Participants Health Benefits Program on behalf of the federal government, “which provides free lifetime medical care to the men of the Tuskegee study and their eligible family members.”
According to Jenkins’ wife, Dr. Diane Rowley, her husband had a history of activism long before discovering the Tuskegee experiment. As a high school student, he helped register voters and was an active member of the Student Nonviolent Coordinating Committee (SNCC) in college. He even went to jail with the future Rep. John Lewis for protesting a whites-only restaurant in Georgia. Jenkins will be remembered for his extraordinary commitment to addressing structural racism in health care, and for his courage. He was among those who helped secure an official apology from the federal government in 1997 for conducting the experiment. He also helped establish the National Center for Bioethics in Research and Health Care at Tuskegee University, which was funded by the government.
Jenkins’ passing is certainly a loss for his family (he is survived by his wife and daughter) and for the medical community, but also for all Americans. But we should be deeply grateful for his contribution to history, and to the present. In these divided and uncertain times, it’s important to have reminders of the incredibly brave truth tellers and change makers among us.