TUSKEGEE, Ala. — It’s a warm spring day, but Ralphine Harper, now in her 90s, has a heavy, white sweater on as she wanders around the third floor of the Legacy Museum on the campus of Tuskegee University.
She’s quiet, for the most part, as she roams the room checking out various artifacts — newspaper clippings, medical reports and official government documents — commemorating the U.S. Public Health Service Syphilis Study at Tuskegee. Toward the end of her tour of the spacious area, Harper’s frail frame stops in front of an enlarged picture on the wall.
“There’s Daddy,” she says.
Sure enough, the biggest picture in the exhibit features her father, Charlie Pollard, an unwilling participant in the Public Health Service syphilis experiment, front and center, his arms raised toward the Heavens as if he thought, in that moment, he might be able to touch them.
In the photo, Pollard is sitting in front of President Bill Clinton, Vice President Al Gore and then-Director for the Center of Disease Control David Satcher. He was one of only four participants who lived long enough to make the trip to the White House in 1997 when Clinton issued a formal apology from the nation to the victims of the study.
“It made me feel good, and it made me feel sad,” Harper said.
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Amy Pack remembers the exact feelings that swept over her body when she was told of the syphilis study in the early 1970s, shortly after an Associated Press report revealed the extent and horror of the scientific experiment performed on human beings in rural Alabama.
“Anger, pain, humiliation,” Pack said. “Some of the other families said they felt stigmatized. I never felt that. I just felt betrayal.”
Pack’s great uncle, Seth Barrow, was in the study, but she soon discovered she was far closer to the experiment than just having a relative as a participant.
Pack had just graduated from nursing school when she went to work for the Macon County Health Department. One of the first nurses she dealt with in the field was Eunice Rivers, the controversial and somewhat mysterious coordinator of the study on the ground.
“Being a nurse, I have treated so many people with syphilis, and I can’t imagine somebody having something like that and just letting them die from the complications and not helping,” Pack said. “It’s truly painful that they had to die like that.”
The study, which studied the effects of untreated syphilis in African-American males, even after a cure was developed, tarnished the reputation of the medical community in the Tuskegee area and other rural, predominantly African-American areas throughout the country.
“At the very beginning, it offered hope,” said Dr. Cesar Fermin, the associate dean for graduate studies and research in the College of Veterinary Medicine, Nursing and Allied Health. “Because there were a lot of people who the pretense was that this was a true study for treating syphilis, but it ended up being not that, but rather a study of following the progression of those infected by the bacteria. In the typical way of doing things in the South, the conspiracy was to keep everything secret.”
The last participant in the study died in 2004, but the legacy and skepticism live on in the eyes of many.
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The Tuskegee syphilis study came to light in 1972, Clinton apologized on behalf of the nation in 1997 and the last of the survivors died more than a decade ago, but the study continues to live and breathe in Tuskegee and around the country.
Understandably, the Tuskegee syphilis experiment led to an erosion in trust of the medical community that has not been regained.
“I think the Tuskegee study actually impacts the whole country, including this area,” said Satcher, who went on to become the 16th Surgeon General of the United States under Presidents Clinton and George W. Bush. “I think the whole idea of having people volunteer to participate in very important studies and to trust the ones who are controlling that study to look out for their best interest has become much more difficult. We’re still trying to get over it.”
One of the driving forces behind the study, a lack of availability of quality healthcare options in rural areas, has not changed 45 years after it came to light.
Most men agreed to be participants in the study because they were under the impression that they would be used to find a cure for the ravaging disease and be treated when a cure was found, treatment they’d never have access to on their own due to financial constraints.
That, obviously, was not the case.
“There’s still a lot of mistrust of the government,” Pack said. “A lot of them don’t really rely on anything that is totally said to them about medical information regarding themselves.”
Tuskegee residents must also deal with the stigmatization that comes with having been through a study that grabbed national headlines for its cruelty.
“Because of the study, there is a social, economic and political negative stereotype for the community,” said Dr. Joan Harrell, a visiting scholar at the Tuskegee Bioethics Center. “For example, oftentimes when my colleagues and I are invited out to address academic bodies and communities, people immediately want to know, ‘Are there still people living with syphilis?’ There appears to be a negative stereotype that Tuskegee, Macon County is an unhealthy place. It is very tainted.”
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While the Tuskegee syphilis experiment was a horrible event that still affects the community in negative ways today, there are those who now seek to turn it into some form of good. Pack views that as a positive thing.
“From this bad experience, we don’t have to forever live our lives stigmatized from the devastation that it caused in everybody’s individual lives, even in the descendents,” Pack said. “We can make something good come from the ashes.”
The Voices for Our Fathers Legacy Foundation was founded in 2014 to provide college scholarships for descendants of the study.
One of this year’s five scholarship recipients awarded at the 20th annual commemorative banquet and luncheon for the descendants of victims was Kimberly Whitley. She is a doctoral student at Tuskegee who is a third-generation descendant of the study. She is studying bioethics.
Total healing will never come to the area. There will always be those who do not trust the government or medicine. But with more constructive dialogue and education, Satcher believes Tuskegee, and other areas like it, can move forward.
“We’ve got to talk about it more than we do,” Satcher said. “We’ve got to explain it more to make sure people understand that there’s a high-level commitment to seeing that nothing like that ever happens again.”
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