syphilis study report celebrates 50th anniversary | News, Sports, Jobs
SOUTHPORT, NC — Jean Heller was working on the floor of the Miami Beach Convention Center when an Associated Press colleague from across the country walked into her workspace behind the event stage and handed her a thin manila envelope.
“I am not an investigative journalist” Edith Lederer told Heller, 29, as contestants tapped past the thick gray drapes separating the media covering the 1972 Democratic National Convention. “But I think there might be something here.”
Inside were documents telling a story that even today staggers the imagination: For four decades the U.S. government denied hundreds of poor black men treatment for syphilis so researchers could study its ravages on the human body.
The United States Public Health Service called him “The Tuskegee Study of Untreated Syphilis in Black Males.” The world would soon come to know him simply as the “Tuskegee Study” — one of the biggest medical scandals in US history, an atrocity that continues to fuel distrust of government and health care among black Americans.
“I said to myself: ‘It’s not possible'” Heller remembers that moment, 50 years ago. “The horror of it.”
The story of the study’s discovery began four years earlier, at a party in San Francisco.
Lederer was working in the AP office there in 1968 when she met Peter Buxtun. Three years earlier, while pursuing a graduate degree in history, Buxtun had taken a job with the local public health department office in 1965; he was tasked with tracking venereal disease cases in the Bay Area.
In 1966, Buxtun had heard from colleagues about a syphilis study being carried out in Alabama. He called the Communicable Disease Center, now the Centers for Disease Control and Prevention, and asked if they had any documents to share. He received a manila envelope containing 10 reports, he told The American Scholar magazine in a 2017 article.
He knew immediately that the study was unethical, he said, and sent reports to his superiors telling them so, twice. The answer was basically: Mind your own work and forget about Tuskegee.
He eventually left the agency, but he couldn’t leave Tuskegee.
So Buxtun turned to his journalist friend, “Edie”, who hesitated.
“I knew I couldn’t do this” Lederer said during a recent interview. “AP, in 1972, was not going to put a young reporter from San Francisco on a plane to Tuskegee, Alabama, to go do some investigative reporting.”
But she told Buxtun she knew someone who could do it.
At the time, Heller was the only woman on the AP’s fledgling Special Assignment Team, a rarity in the industry. Yet she was not spared the occasional sexism of the time. A 1968 article about the team in AP World, the news service’s employee newsletter, described the team as “10 men and a pretty girl.”
A caption under Heller’s 5ft 2in photo called the “like a leprechaun” journalist “Charming and knowledgeable. »
Lederer knew Heller from their days together at AP headquarters in New York and then at 50 Rockefeller Plaza, where Heller started in radio.
“I knew she was an excellent journalist” Lederer said.
On a trip to visit his parents in Florida, Lederer took a quick detour to Miami Beach, where Heller was part of a team covering the convention — hence American senses George McGovern of South Dakota and Thomas Eagleton of Missouri would emerge as a Democrat. presidential and vice-presidential candidates.
During a recent interview at her home in North Carolina, Heller recalled putting the leaked PHS documents in her briefcase. She says she didn’t have time to read the content before the flight back to Washington.
Sitting next to her was Ray Stephens, leader of the investigation team. She showed him the documents. Stephens realized that the government was not denying the existence of the study, simply refusing to talk about it.
Heller remembers Stephens saying: “When we get back to Washington, I want you to drop everything you’re doing and focus on this.”
The government blocked her and refused to talk about the study. So Heller began making the rounds elsewhere, starting with colleges, universities, and medical schools.
She even contacted her mother’s gynecologist, a “Straight ahead, middle of the road, senior doctor.”
“I asked him if he’d ever heard of that, and he said, ‘That’s not done. I just don’t believe it.
Finally, one of his sources recalled seeing something about the syphilis study in a small medical publication. She headed to the DC Public Library.
“I asked them if they had any documents, books, magazines, etc. that would match what we would today call a profile or search engine, for ‘Tuskegee’, ‘farmers’, ‘Public Health service, ”syphilis”, Heller said.
They found an obscure medical journal – Heller doesn’t remember the title – that had chronicled the study. “progress.”
“Every two years they would write something about it,” she says. “It was mostly about the discoveries – no morality was ever questioned.”
Normally, journalists celebrate these “Eureka” moments. But Heller felt no such elation.
“I knew people had died, and I was about to tell the world who they were and what they had,” she said, her voice dropping. “And finding joy in that…would have been unseemly.”
Armed with the diary, Heller returned to the PHS. They gave in.
She says the thread of the story – the first paragraph or sentence of a news article – came to her quickly.
“Marv Arrowsmith, the office manager, walked past my office and I said, ‘Hey, Marv. Do you want to post this? » she remembers. “And he read it and he looked at me and he said, ‘Can you prove it?’ I said yes.’ He said, ‘You got it.’
An AP medical writer helped interview doctors for the story. Within weeks, the team felt they had enough to post.
Arrowsmith suggested they first offer the story to the now-defunct Washington Star if it promised to run it on the front page.
“The Star was a highly respected PM (afternoon) newspaper, and if they took it seriously others might follow,” Heller said.
The story ran on July 25, 1972, a Tuesday. It was a poignant story.
Beginning in 1932, the Public Health Service—in conjunction with the famed Tuskegee Institute—began recruiting black men in Macon County, Alabama. The researchers told them that they needed to be treated for “bad blood,” a catch-all term used to describe several conditions, including anemia, fatigue, and syphilis. The treatment at the time consisted essentially of doses of arsenic and mercury.
In return for their participation, the men would receive free medical exams, free meals and funeral insurance – provided the government is allowed to perform an autopsy.
Eventually, more than 600 men were registered. What they weren’t told was that about a third would receive no treatment 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 the affliction, and 154 others from heart disease.
“As much injustice as there was for black Americans in 1932, when the study began, I couldn’t believe that any agency of the federal government, as misguided as it was to begin with, could let this continue for 40 years”, Heller said. “It just pissed me off.”
Nearly four months after the story was published, the study was called off.
The government created the Tuskegee Health Benefits program to start treating men, then expanded it to wives, widows and children of participants. 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 long shadow over the nation. Many African Americans have cited Tuskegee for refusing to seek treatment or participate in clinical trials. It has even been cited more recently as a reason not to get vaccinated against COVID-19.
At 79, Heller is still haunted by her story and the effects it had on the men and women of rural Alabama and the nation as a whole.
For the story, Heller would win some of journalism’s highest honors – the Robert F. Kennedy, George Polk and Raymond Clapper Memorial awards. (Carl Bernstein and Bob Woodward of the Washington Post, writing about the Watergate scandal, finished in second place for the Clapper Award.)
Hanging in her office is a copy of the front-page byline she got from The New York Times, extremely rare for an AP staffer. But the hype surrounding Tuskegee would play a big role in Heller’s decision to leave the AP in 1974.
“I felt after all the hubbub on…Tuskegee, and what followed, that I had to move on,” she says. She pursued a three-decade career that took her from the hills of Wyoming to the beaches of South Florida.
These days, Heller spends his time creating fiction. She is five books in a mystery series starring Deuce Mora, a hard-driving journalist who is 6 feet tall.
Despite her distress over the state of the news, she never thought of returning to journalism.
“You can’t go home anymore; I firmly believe 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 big scoops of American journalism, Lederer replied: “Maybe, you know, a little.” But she knew the story was more important than her or Heller or any individual reporter.
“What mattered to me most was that this felt like a horrific and deadly injustice to innocent black men,” said Lederer, who was the first woman assigned full-time to cover the Vietnam War for the AP and who remains its main correspondent at the UN.
“And for me, the important thing was to verify it and ensure that it was released to the general American public – and that something was done to prevent such experiences from happening again.”
“History is not about me anyway,” she says. “It’s about them.”