Southport, NC, Jul 26 (BUS): Jan Heller was toiling away on the floor of the Miami Beach Convention Center when an Associated Press colleague from the other end of the country walked to her workplace behind the event platform and handed her a thin Manila. Circumstance.
“I’m not an investigative reporter,” Edith Lederer told 29-year-old Heller as competitors printed beyond the thick gray hangings separating news outlets covering the 1972 Democratic National Convention. “But I think there might be something here. “
Inside were documents that told a tale that, even today, sparks the imagination: For four decades, the US government denied hundreds of poor black men treatment for syphilis so that researchers could study the damage to the human body, the Associated Press reports.
The US Public Health Service called it the “Tuskegee Study of Untreated Syphilis in the Negro Male”. The world will soon recognize it as just the “Tuskegee Study”—one of the biggest medical scandals in U.S. history, and atrocities that continue to fuel mistrust of government and health care among black Americans.
Heller remembers that moment, 50 years ago, “I thought, ‘It can’t be like that.'” “This is awful.”
The story of how the study came into being began four years ago, at a party in San Francisco.
Leader was working in the Associated Press office there in 1968 when she met Peter Buxton. Three years earlier, while pursuing graduate studies in history, Buxton worked for the local Public Health Services office in 1965; He was assigned to follow up cases of venereal diseases in the Gulf region.
In 1966, Buxton heard his colleagues talk about a study of syphilis taking place in Alabama. Call the Center for Infectious Diseases, now the Centers for Disease Control and Prevention, and ask if they have any documents they can share. He received an envelope from Manila containing 10 reports, he told The American Scholar in a story published in 2017.
He said he knew right away that the study was unethical, and sent reports to his superiors telling them twice. The response was basically: Take care of your business and forget about Tuskegee.
He eventually left the agency, but could not leave Tuskegee.
So, Buxton turned to his journalist friend “Eddie” who objected.
“I knew I couldn’t do it,” Lederer said during a recent interview. “AP, in 1972, wasn’t going to fly a young reporter from San Francisco on a plane to Tuskegee, Alabama, to go do an investigative story.”
But she told Buxtun that she knew someone who could.
At the time, Heller was the only woman on the Associated Press’s new special assignment team, a rarity in the industry. However, she was not spared the occasional sexism of the era. A 1968 story on the AP World, Wired Service Employee Newsletter, described the band as “10 nice guys and girls.”
A caption below the 5ft 2cm photo of Heller described the “genie-like” reporter as “beautiful and competent.”
Lederer knew Heller from their days together at AP headquarters in New York, and then at 50 Rockefeller Plaza, where Heller started in the radio office.
“I knew she was a great reporter,” Lederer says.
During a trip to visit her parents in Florida, Lederer made a short trip to Miami Beach, where Heller was part of a team covering the convention—through which U.S. Senators George McGovern of South Dakota and Thomas Eagleton of Missouri appeared as the Democratic presidential and vice presidential candidates.
During a recent interview at her North Carolina home, Heller recalled that she had put the leaked PHS documents in her purse. She says she didn’t walk around to read the contents until the flight back to Washington.
Seated next to her was Ray Stevens, the head of the investigation team. I showed him the documents. Stephens realized that the government did not deny the existence of the study, but rather refused to talk about it.
Heller remembers Stevens saying, “When we get back to Washington, I want you to give up everything you’re doing and focus on this.”
The government stopped her and refused to talk about the study. So, Heller began making the rounds elsewhere, starting with colleges, universities, and medical schools.
She even reached out to her mother’s gynecologist, “Immediately down the line, halfway through, a superior doctor.”
“I asked him if he had ever heard of this, and he said, ‘It’s not happening. I just can’t believe it.'”
Finally, one of her sources remembered seeing something about the study of syphilis in a small medical publication. I headed to the capital’s public library.
“I asked them if they had any kind of documents or books or magazines, or whatever … the syphilis service,” Heller says.
They found a mysterious medical journal – Heller can’t remember the title – which was chronicling the study’s “progress”.
“Every two years, they’d write something about it,” she says. “Mostly it was about the results – none of the ethics were questioned.”
Usually, journalists celebrate these “Eureka” moments. But Heller did not feel such joy.
“I knew people were dead, and I was about to tell the world who they were and what they had,” she said in a low voice. “And to find any pleasure in that… would be inappropriate.”
Armed with the magazine, Heller returned to PHS. They have given up.
She says the introduction to the story — the first paragraph or first sentence of a news article — came to her quickly.
“Marv Arrowsmith, the head of the office, walked past my desk and said, ‘Hey, Marv. Are you going to post this? And he read it and looked at me and said, ‘Can you prove it?’ I said yes.’ He said: I understand.
A medical writer for the Associated Press helped interview the doctors for the story. In just a few weeks, the team felt they had enough to post.
Arrowsmith suggested that they present the story first to the defunct Washington Star, if it promised to publish it on the front page.
“The Star was one of the most respected newspapers in the afternoon, and if they take it seriously, others may follow,” Heller says.
The story was published on July 25, 1972, on a Tuesday. It was a horrific tale.
Beginning in 1932, the Public Health Service—working with the famous Tuskegee Institute—began recruiting black men in Macon County, Alabama. The researchers told them they should be treated for “bad blood,” an umbrella term used to describe many ailments, including anemia, fatigue and syphilis. Treatment at the time consisted mainly of doses of arsenic and mercury.
In the end, more than 600 men were registered. What they were not told was that about a third of them would receive no treatment at all – even after penicillin became available in the 1940s.
By the time Heller’s story was published, at least seven of the men in the study had died as a direct result of injury, and another 154 from heart disease.
“As much as there was injustice to black Americans in 1932, when I began the study, I couldn’t believe that an agency of the federal government, as much as it had initially been, would let this go on for 40 years,” Heller says. “It made me angry.”
Nearly four months after the story was published, the study was halted.
The government created the Tuskegee Health Benefits Program to begin treating men, and eventually expanded it to include participants’ wives, widows and children. A class action lawsuit filed in 1973 resulted in a $10 million settlement.
The last participant died in 2004, but the study still casts a shadow over the nation. Several African Americans cited Tuskegee’s refusal to seek medical treatment or participate in clinical trials. It was even recently cited as a reason not to get a COVID-19 vaccine.
Heller, 79, is still haunted by her story and the effects it had on men and women in rural Alabama, and the nation as a whole.
For the story, Heller has won some of the most prestigious journalistic awards – the Robert F. Kennedy, George Polk and Raymond Clapper Memorial Awards. (The Washington Post’s Carl Bernstein and Bob Woodward, who write about the Watergate scandal, took second place in the Clapper Prize.)
Hanging in her office is a copy of the front page she got in the New York Times, extremely rare for an Associated Press employee. But the hype surrounding Tuskegee would play a large role in Heller’s decision to leave the Associated Press in 1974.
“I felt after all the fuss she’d been through…Tuskegee, and what followed, that I had to move on,” she says. She continued a three-decade career that would take her from the hills of Wyoming to the shores of South Florida.
These days, Heller spends her time letting out imaginations. It’s five books in a mystery series featuring Deuce Mora, a powerful 6-foot-tall reporter.
Although disturbed by the state of the news business, she never considered returning to journalism.
“You can never go home again; I strongly believe in that,” she says. “And I don’t want to compete against myself or against expectations.”
When asked if she regrets giving up what is arguably one of the greatest scoops in American journalism, Lederer replied, “Maybe, you know, a little.” But she knew the story was bigger than her, or Heller, or any individual reporter.
“What I cared about most was that this was a horrible, murderous injustice to innocent black men,” says Leader, who was the first woman to be commissioned full-time to cover the Vietnam War for the Associated Press and remains the principal UN correspondent.
“For me, the important thing was to check it out and see that it was released to the broader American audience – and that something was done to prevent any such experiments from happening again.”
Heller agrees.
“The story isn’t about me anyway,” she says. “It’s about them.”