By JEAN HELLER Associated Press
WASHINGTON (AP) — EDITOR’S NOTE — On July 25, 1972, Jean Heller, a reporter on The Associated Press investigative team, then called the Special Assignment Team, broke news that rocked the nation. Based on documents leaked by Peter Buxtun, a whistleblower at the U.S. Public Health Service, the then 29-year-old journalist and the only woman on the team, reported that the federal government let hundreds of Black men in rural Alabama go untreated for syphilis for 40 years in order to study the impact of the disease on the human body. Most of the men were denied access to penicillin, even when it became widely available as a cure. A public outcry ensued, and nearly four months later, the “Tuskegee Study of Untreated Syphilis in the Negro Male” came to an end. 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 in research studies were treated, and more than two decades later President Bill Clinton formally apologized for the study, calling it “shameful.”
Today, the effects of the study still linger — it is often blamed for the unwillingness of some African Americans to participate in medical research.
In observance of the 50th anniversary of Heller’s groundbreaking investigation, the AP is republishing the original report and a recent interview with her and others on how the story came together.
For 40 years the U.S. Public Health Service has conducted a study in which human guinea pigs, denied proper medical treatment, have died of syphilis and its side effects.
The study was conducted to determine from autopsies what the disease does to the human body.
PHS officials responsible for initiating the experiment have long since retired. Current PHS officials, who say they have serious doubts about the morality of the study, also say that it is 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 give to the survivors while the study of the disease’s effects continues.
The experiment, called the Tuskegee Study began in 1932 with about 600 black men mostly poor and uneducated, from Tuskegee, Ala., an area that had the highest syphilis rate in the nation at the time.
One-third of the group was free of syphilis; two-thirds showed evidence of the disease. In the syphilitic group, half were given the best treatment known at the time, but the other half, about 200 men, received no treatment at all for syphilis, PHS officials say.
As incentives to enter the program, the men were promised free transportation to and from hospitals, free hot lunches, free medicine for any disease other than syphilis and free burial after autopsies were performed.
The Tuskegee Study began 10 years before penicillin was discovered to be a cure for syphilis and 15 years before the drug became widely available. Yet, even after penicillin became common, and while its use probably could have helped or saved a number of the experiment subjects, the drug was denied them, Dr. J.D. Millar says.
He is chief of the venereal disease branch of the PHS’s Center for Disease Control in Atlanta and is now in charge of what remains of the Tuskegee Study. Dr. Millar said in an interview that he has 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,” Dr. Millar said.
“But the study began when attitudes were much different on treatment and experimentation. At this point in time, with our current knowledge of treatment and the disease and the revolutionary change in approach to human experimentation, I don’t believe the program would be undertaken,” he said.
Syphilis, a highly contagious infection spread by sexual contact, can cause if untreated, bone and dental deformations, deafness, blindness, heart disease and central nervous system deterioration.
No figures were available on when the last death occurred in the program. And one official said that apparently no conscious effort was made to halt the program after it got under way.
A 1969 CDC study of 276 treated and untreated syphilitics who participated in the Tuskegee Study showed that seven had died as a direct result of syphilis. Another 154 died of heart disease.
CDC officials say they cannot determine at this late date how many of the heart disease deaths were caused by syphilis or how many additional deaths could be linked to the disease.
However, several years ago an American Medical Association study determined that untreated syphilis reduces life expectancy by 17 per cent in black men between the ages of 25 and 50, a precise description of the Tuskegee Study subjects.
Don Prince, another official in the venereal disease branch of CDC, said the Tuskegee Study had contributed some knowledge about syphilis, particularly that the morbidity and mortality rate among untreated syphilitics 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 it. It really puzzles me.”
At the beginning of 1972, according to CDC data, 74 of the untreated syphilitics were still living. All of them, Dr. Millar said, were men who did not suffer any potentially fatal side effects from their bouts with the disease.
Some of them received penicillin and antibiotics in past years for other aliments, Prince said, but none has ever received treatment for syphilis. Now, both men agree, it’s too late
Recent reviews of the Tuskegee Study by the CDC indicate that treatment now for survivors is medically questionable, Dr. Millar said. Their average age is 74 and massive penicillin therapy, with possible ill side effects, is deemed too great a risk to individuals, particularly for those whose syphilis is now dormant.
However, Dr. Millar, added there was a point in time when survivors could have been treated with at least some measure of success.
“The most critical moral issue about this experiment arises in the post-war era, the years after the end of World War II when penicillin became widely available.
“I know some were treated with penicillin for other diseases and then dropped from the program because the drug had some positive effect on the primary disease (syphilis). Looking at it now, one cannot see any reason they could not have been treated at that time.”