By JEAN HELLER
WASHINGTON, AP — EDITORS NOTE — On July 25, 1972, Jean Heller, a reporter for the Associated Press Investigative Team, then called the Trust Team, broke news that rocked the nation. Based on documents leaked by Peter Buxtun, a whistleblower with the US Public Health Service, the then 29-year-old journalist and the only woman on the team, reported that the federal government left hundreds of men blacks in rural Alabama without treatment for syphilis for 40 years to study the impact of the disease on the human body. Most men were denied access to penicillin, even when it became widely available as a remedy. A public outcry ensued, and nearly four months later the “Tuskegee Study of Untreated Syphilis in Black Males” ended. The investigation would have far-reaching implications: The men in the study filed a lawsuit that resulted in a $10 million settlement.Congress passed laws governing how subjects of research studies were handledand more than two decades later, President Bill Clinton officially apologized for the study, calling it “shameful.”
Today, the effects of the study persist – it is often blamed for the reluctance of some African Americans to participate in medical research.
On the 50th anniversary of Heller’s groundbreaking investigation, the AP is republishing the original report and a recent interview with her and others about how the story unfolded.
For 40 years, the United States Public Health Service conducted a study in which human guinea pigs, deprived of proper medical treatment, died of syphilis and its side effects.
The study was conducted to determine from autopsies what the disease does to the human body.
The PHS officials responsible for initiating the experiment have long since retired. Current PHS officials, who say they have serious doubts about the study’s morality, also say it’s too late to treat syphilis in any of the study’s surviving participants.
But PHS doctors say they are rendering whatever other medical services they can now provide to survivors while the study of the disease’s effects continues.
The experiment, called the Tuskegee Study, began in 1932 with about 600 mostly poor and uneducated black men from Tuskegee, Alabama, an area that had the highest rate of syphilis in the nation at the time.
A third of the group was free of syphilis; two-thirds showed signs of the disease. In the syphilis group, half received the best known treatment at the time, but the other half, about 200 men, received no treatment for syphilis, according to PHS officials.
As incentives to participate in the program, men were promised free transportation to and from hospitals, free hot meals, free medicine for any illness other than syphilis, and free burial after autopsies.
The Tuskegee study began 10 years before penicillin was discovered as a cure for syphilis and 15 years before the drug became widely available. Yet even after penicillin became commonplace, and while its use could probably have helped or saved a number of test subjects, they were denied the drug, says Dr. JD Millar.
He is chief of the venereal disease branch of the Center for Disease Control at the PHS in Atlanta and is now responsible for what remains of the Tuskegee study. Dr. Millar said in an interview that he had serious doubts about the program.
“I think a definite serious moral problem existed when the study was undertaken, a more serious moral problem was overlooked in the post-war years when penicillin became available but was not given to these men and a moral problem still exists,” said Dr Millar. said.
“But the study began when attitudes were very different about treatment and experimentation. At this point, with our current knowledge of treatment and disease and the revolutionary change in the approach to human experimentation, I don’t think the program would be undertaken,” he said.
Syphilis, a highly contagious infection transmitted through sexual contact, can lead, if left untreated, to bone and tooth deformities, deafness, blindness, heart disease and deterioration of the central nervous system.
No figures were available on when the last death occurred under the program. And an official said that apparently no conscious effort was made to shut down the program after it launched.
A 1969 CDC study of 276 treated and untreated syphilis who participated in the Tuskegee study showed that seven died as a direct result of syphilis. 154 others died of heart disease.
CDC officials say they cannot determine at this late date how many heart disease deaths were caused by syphilis or how many additional deaths may be related to the disease.
However, several years ago, a study by the American Medical Association determined that untreated syphilis reduced life expectancy by 17% in black men aged 25 to 50, an accurate description of the subjects of the l Tuskegee study.
Don Prince, another official of the CDC’s venereal disease branch, said the Tuskegee study has provided insight into syphilis, particularly that morbidity and mortality rates in untreated syphilis do not were not as high as previously believed.
Like Dr Millar, Prince said he thought the study should have been halted with penicillin treatment for participants after World War II.
“I don’t know why the decision was made in 1946 not to stop the program,” Prince said. “I was unpleasantly surprised when I first came here and found out about this. It really baffles me.
At the beginning of 1972, according to CDC data, 74 of untreated syphilis were still alive. All, Dr Millar said, were men who suffered no life-threatening side effects from their bouts with the disease.
Some of them have received penicillin and antibiotics in recent years for other foods, Prince said, but none have ever received treatment for syphilis. Now both men agree, it’s too late
Recent CDC reviews of the Tuskegee study indicate that the current treatment of survivors is medically questionable, Dr. Millar said. Their average age is 74, and massive penicillin treatment, with possible adverse side effects, is considered too great a risk for individuals, especially those whose syphilis is currently dormant.
However, Dr Millar added that there was a time when survivors could have been treated with at least some success.
“The most critical moral issue regarding this experiment arises in the post-war period, the years following the end of World War II, when penicillin became widely available.
“I know that some have been treated with penicillin for other illnesses and then dropped out of the program because the drug had a positive effect on the primary illness (syphilis). Looking at it now, there’s no reason why they couldn’t have been dealt with at that time.