1972, Jean Heller was a young investigative journalist at the Associated Press. While she was covering the US presidential election, a Washington bureau supervisor tipped her off about a man by name Peter Buchtunwho worked with the United States Public Health Service (USPHS), the government agency responsible for public health in the country.
Buxtun was disillusioned that nothing had been done to stop a USPHS research operation in Macon County, Ala.
Heller found that in 1932 the USPHS, the Alabama State Board of Health, the Macon County Health Unit, and the Tuskegee Institute started a multipronged initiative called the Study of Untreated Syphilis in Negro Males. For decades, researchers had forced about 600 black men ages 25 and older to take part in this study, but only 399 of those men entered the study with syphilis. The others were unknowingly injected with the disease. In the end, all men were deliberately denied accessible treatment and suffered from numerous health problems and premature deaths.
When her story, Black Men Untreated in the Tuskegee Syphilis Study, was published on July 25, 1972, it set off a chain reaction in the federal government exposing the open, extreme racism in American medicine, including human experimentation on black bodies and unethical scientific and medical practices on black people.
The recommendations of an ad hoc panel resulted in the study being permanently discontinued in October 1972. By 1974, survivors of the experiment were awarded $10 million in a class action lawsuit. The experiment in which researchers knowingly gave these black men syphilis and waited for them to die from it is just one example of a long history of distrust between African Americans and the American medical community that continues to this day.
Heller, now 79 years old and based in South Carolina, is an author of mystery books. She spoke to BET.com in a telephone interview about the coverage of this landmark story that has become so central to our understanding of medical apartheid and attempts to cover it all up.
BET.com: How did you come across the details behind this story?
Jean Heller: Peter Buxtun was a young man, as far as I remember, in San Francisco… AP had named a reporter in San Francisco Edie Lederer who was a friend of mine. Peter had heard about an ongoing study about not treating people with syphilis for some reason. So he went to his supervisor in Atlanta and asked about it and said, “Is there anything wrong with that?” The lad texted back and said, “It’s not your job, just do your job. Don’t worry about it.”
So he gave these letters to Edie who was on her way to London, I was in Miami Beach for the (Senator George) McGovern nominating convention. She changed her flight so she could come via Miami. She jumped in a cab and got to the AP’s office there and said, “I don’t know what this is about, I don’t know what to do about it, I’m not an investigative reporter, but you’re like that here. Do what you can with it.”
I didn’t have much time to think about it during the convention, but I sat next to him on the flight back to Washington after the convention Ray Stevens, who was the commander of the special operations team, and I said read these and tell me what you think. He said the manager didn’t deny it. He’s acknowledging it by basically telling this college boy to just forget about it and leave it alone.
Ray said, ‘When we get back to Washington, drop whatever’s on your plate and just focus on that.’ So that’s what I did, and that’s how I uncovered the truth about the study.
The Tuskegee Experiment: A Lived Experience
From 1932 to 1972, black men in rural Alabama were denied treatment for syphilis by government physicians. These pictures tell their story. 50 years later.
A 1973 class action lawsuit resulted in a $10 million payday for a group of Tuskegee Study survivors. None of the scientists or doctors involved were ever held accountable. In 1997, President Bill Clinton formally apologized to the survivors and their families. Here is one of those men, Herman Shaw, speaking at a ceremony at the White House.
The US health service promised burial insurance, but the men signed consent forms to have their bodies autopsied to check for the effects of syphilis. This document illustrates this.
Eunice Rivers (right), a registered nurse trained at what was then Tuskegee Institute, served as the liaison between the government and the men. She managed health care but also assisted with studies.
Blood samples were taken from them to see the effects of the disease over time in the men who carried a latent syphilitic infection. The government did not treat them even when penicillin became available in 1941.
BET.com: A month before your story was published, Bob Woodward and Karl Bernstein broke the first Watergate story. Vietnam was dead, and of course the nation had endured a decade, if not more, of racial strife. Did America question itself on many things back then?
Jean Heller: There were many distractions. I mean, Bobby Kennedy was murdered in 1968 Martin Luther King Jr. the same year. These were effects that were lasting in this country. There was the civil rights movement, which I hesitate to call a distraction, it was one of the most important things that ever happened to us.
BET.com: Do you think the country had the appetite to know about it back then, or was it too much?
Jean Heller: It wasn’t a story that would be ignored. And I didn’t care whether the country was ready for it or not. This story had to be told. I mean, how do you prepare to accept such atrocities? disregard for human life? I don’t think there’s any way to prepare for that. I don’t think it would have been better for the country to hear about it and my biggest concern was to stop the damn thing and expose the people involved.
BET.com: They debunked them, but it seems like there was no accountability for the people involved in what could be considered a criminal act. Caspar Weinberger was Minister for Health Education and Welfare (HEW) at the time, but I see no record of him saying anyone had to pay for it.
Jean Heller: No, I don’t think he did that. The day the story broke… the people working at the HEW building in Washington, DC rioted and went and sat down at the Secretariat and demanded that it be stopped and that there be some accountability. The secretary stopped it immediately, and the pathologist who had been conducting the autopsies when the subjects died immediately resigned. Teddy Kennedy ordered a Senate investigative hearing into how this ever happened.
As far as I know, apart from the public humiliation, the doctors never suffered the consequences. For one thing, there is such a thing as a right to know about human experimentation. It wasn’t very common then, but it is now.
BET.com: When I received these recordings, I received an audio interview from a nurse who was central to all of this and who spoke specifically about her role in the study. Eunice Rivers didn’t defend it, but seemed to say that these men were getting free health care and things they never would have gotten if they hadn’t taken part in the study. what would you answer her?
Jean Heller: I would tell her that she turned a blind eye. When the study began in 1932, there weren’t really any good treatments for syphilis. Not too long after that, someone invented penicillin, and it became a very quick, very easy, and relatively painless way to combat these types of things. Yet the victims of the Tuskegee study were never offered that option. The doctors didn’t really want them to get well. They wanted them to die so their bodies could be autopsied to determine if syphilis affects black bodies differently than white bodies.
Say what you like, but it wasn’t in these men’s best interests. More than 100 of them died as a direct result of untreated syphilis, and we do not know how many of their wives or girlfriends or unborn children contracted it. There was no basic requirement for this science, if that was it.
The irony is that Hitler came to power in Germany in 1932, and at the same time that the United States condoned the syphilis study and prosecuted the Nazis for unspeakable human experiments. I just find that the cruellest kind of irony and hypocrisy. And Sister Rivers, I think she had blinkers on because there was a point during the study where a man found out what he had and went to Montgomery to get treatment. Somebody who was in charge of the study went to Montgomery and got him out of the clinic and told the doctors if you ever treat someone from Tuskegee again, we’re going to make you lose all your federal funding.
It was just unbearable suffering and if she couldn’t see living there in the midst of all these men then she just wasn’t looking.
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In Part 2 of BET.com’s special report, The Tuskegee Experiment 50 Years Later, we have Part 2 of our exclusive interview with Jean Heller, plus an audio interview from 1977 with Sister Eunice Rivers and an interview with the granddaughter of one of the Tuskegee Victim.
*This interview has been edited for length and clarity.