Reporter Jean Heller recalls how she broke the story of the Tuskegee syphilis study 50 years ago
Fifty years ago last week, a story broke that revealed that for four decades, the then-U.S. Public Health Service used hundreds of Black men in Alabama as guinea pigs in what is known as the Tuskegee Study to determine how syphilis affects the human body. And the scandal turned out to be worse than initially thought.
"It was not until 1972 that an alert newspaper woman broke the story. The government states that only seven men in the experiment died as a direct result of syphilis. But now the Associated Press reports that the death toll may be as high as 100," journalist Tony Brown reported in a 1993 episode of Tony Brown's Journal.
That AP reporter who broke the story in 1972 was Jean Heller, who currently lives near Wilmington. She reported that the 600 black men who signed up for the study were never told they had syphilis and two-thirds of them never received any treatment. When the story broke, in addition to the deaths, more than 150 of the Black men had developed heart disease. The study's participants sued and settled out of court for $10 million in 1974. Heller says it took a lot of digging to uncover the story that shocked the nation.
Jean Heller: I didn't have hard evidence that it really existed. Nobody wanted to talk about it. And then I found this obscure medical journal. They had been tracking statistics from the study. That, to me, was hard evidence. The study existed. When I went back to CDC holding a bunch of these magazine articles in my hand, they caved.
Gwendolyn Glenn: Now, a lot of times as journalists, when we get that big story "hey, there's something here," we feel that "aha." Did you feel any of that when you realized this story was big and that it was true?
Heller: When I actually confirmed it, I was devastated. Stunned. I could not believe that in the United States, something like that had been allowed to go on for 40 years. I don't understand how people can do that to other people. And I think these people were chosen not because there was a large syphilis population, but because they were poor farmers. They were Black and they were in Alabama and people figured they wouldn't object.
Glenn: Well, I also read how they got these men to be a part of the study. And there were these fliers out — did you see any of these fliers? Tell me what those fliers said.
Heller: It offered the men free health care, annual checkups, certificates of appreciation and free burial. They did not tell them that they had syphilis. And one man who found out what he had drove over to Montgomery to a clinic to get treated. And the doctors had him chased and brought back and warned the clinic that if they ever treated another subject from Tuskegee, they would lose their federal funding.
Glenn: In a news report after the story broke, Dr. Reginald James relates what happened when one of the men came to him for treatment.
Dr. Reginald James: I examined him and I thought he needed treatment. But one side decided to treat him with the arsenicals or bismuth. Then I was informed that this was a patient in the study: "don't treat that patient."
Glenn: When the story broke on July 25, 1972, what happened and what was the atmosphere like?
Heller: The story appeared on the front page of almost every newspaper in the United States. And Caspar Weinberger was secretary of H.E.W. — health, education and welfare. He put a stop to the study. People who worked in the main office of H.E.W. in Washington staged a sit-in in his office, protesting the study. A few days afterwards, Ted Kennedy said he was convening a Senate investigation into how this started and why it went on for 40 years and why these men were denied penicillin when it became the drug of choice to treat syphilis. And that hearing resulted in, a couple of years later, an entire rewrite of the regulations covering human experimentation.
I went back to Tuskegee immediately after the story broke, and one of the men I talked to was Charlie Pollard, and I asked him how the disclosure of this study had affected him. And he said, "well, this used to be a friendly town and now people cross the street to avoid shaking my hand," and I almost burst out into tears. The thought going through my head was, "What have I done to these people? I've ruined their lives."
But once the federal government agreed to terms of compensation, then people came out of the woodwork who wanted to prove they were part of the study, or families of people who had died as a result of the study. And all of a sudden, the surviving participants became heroes. I mean, it's 50 years later, and I'm still appalled. And it's hypocrisy. At the same time this study was going on, we were trying Nazis in Germany with our allies and punishing them for crimes they committed against Jews and other ethnic groups. And yet we were letting this go on without even questioning it. I am not saying that the Nazi criminals didn't get exactly what they deserved, but the Tuskegee participants certainly didn't get what they deserved.
Glenn: And since then, there have been documentaries done about this. And there was also a movie made — "Miss Evers Boys." "Miss Evers Boys" focused on the nurse. There was an African American nurse who took care of these men. She seemed to take the stance that she was not the doctor. I have a clip of her talking, nurse Rivers.
Eunice Rivers Laurie: I am not worried about what they say, that I was withholding treatment, because these men were never told that they could not go to any doctor. I was not the doctor. I was the nurse. And nurses don't prescribe. That was a doctor's responsibility.
Heller: She was an extremely nice lady. She had been ordered by these Washington doctors to look after these men while they weren't there and probably didn't feel comfortable saying no. I think she was naive and I think she was used.
Glenn: But did you blame her for not speaking up and not telling these men what was going on because she knew?
Heller: I don't think in that society at that time, she would have even entertained the notion. It was too much fear.
Gwendolyn Blacks during that period were?
Heller: She was all alone. She had nobody to bounce concerns off of, nobody to encourage her to step forward.
Glenn: And 50 years later, still lots of ramifications from this. And with COVID going on and with other research studies, a lot of African Americans are hesitant to participate and even hesitant to take the vaccines and other vaccines because of the Tuskegee study.
Jean were reluctant to participate in studies for sickle cell anemia. They don't trust the white medical establishment. And how could you blame them?
Jean Heller, who broke the story, left journalism in 2008 to become a mystery writer. She lives near Wilmington. In 1997, then-President Bill Clinton formally apologized to the men and their families.
"What was done cannot be undone. But we can end the silence. We can stop turning our heads away," Clinton said. "We can look at you in the eye and finally say, on behalf of the American people, what the United States government did was shameful and I am sorry."