THEY said Ernest Hendon did not look his age when he stood, two years ago, in front of the Alabama House of Representatives in Montgomery. His back was straight, his eyes bright. He felt good, he told reporters; and better still now that the Alabama House had expressed regret for what had been done to him. “I feel this means that it won’t happen again,” he said happily.
Limelight was the last thing he had ever expected. He was born a poor black sharecropper’s son in Macon County, Alabama, and was a sharecropper himself. Nothing came easily to him or his neighbours. They hoed small plots of red earth in the pine woods, lived in wooden shacks, and picked cotton in the season. There was little money around and small chance of seeing a doctor, though syphilis was more rampant there than anywhere else in the South. From time to time, the Ku Klux Klan lit their fiery crosses in the hills.
Mr Hendon remembered the day the bus arrived, in 1932. It carried doctors and nurses who had come to do a study among the syphilitic sharecroppers. In exchange for their help they would get free medical examinations, burial insurance, free transport to and from the hospital in Tuskegee and – a rare treat – the chance to stop and shop in town. On the days they were examined, the men got a free hot meal. Along with 398 others, Mr Hendon, then 24, signed up to take part.
He was already unwell, though he himself, like most of the men, was not sure what was wrong with him. The doctors called it “bad blood”, a term that also covered anaemia and general weariness. Some of the volunteers were given, for a while, the fierce and ineffective syphilis treatment of the time: injection with arsenic compounds and mercury ointment for the crusted ulcers on their skin. Mr Hendon, like many of the others, was not. He was given “pink medicine”, or aspirin, and “some kinda brown-looking medicine”, which was iron tonic. When a “last chance” for free treatment was offered, Mr Hendon turned up and was given a spinal tap: “They give me a test in the back and they draw something out of me.” “They said it would do you good,” he said later.
None of it did him good. The doctors and nurses were not there to cure, but to observe the progress of untreated syphilis. Patients who are untreated sometimes develop no symptoms, and sometimes spontaneously recover; but they can also suffer liver deformity, heart damage, paralysis and insanity. Burial insurance was offered because the data for the study was to come from the men’s autopsies. But none of this was communicated to them.
For 40 years, the Tuskegee Syphilis Study continued. Mr Hendon went for his examinations and, after 25 years, got a certificate of appreciation from the surgeon-general. The men especially liked Eunice Rivers, a motherly black nurse who made them feel at home in the hospital. Several of the doctors and nurses were black, and the Tuskegee Institute, which ran the hospital, was a black university. There was dignity in the proceedings, and a sense that the doctors cared about the health of poor blacks. At that time, few others did.
Yet the study also showed clearly the parternalistic racism of the age. The federal Public Health Service (phs) wanted not only to compare the effects of syphilis in blacks and whites, but also to stop black “degeneracies” spreading to the white population. It made no secret of this. The Tuskegee study was mentioned in reports and cited at conferences. The fact that it was doing nothing to cure Mr Hendon or the others was, however, kept quiet.
Certain moments were tricky. In 1942, the army drew up a list of likely recruitsfrom Macon County. Many subjects of the study were on it, presumably including Mr Hendon, who was the right age. Having seen them, the local recruiting board ordered them to be treated for syphilis; but the assistant surgeon-general intervened to have their names removed from the list.
The next year, penicillin became an effective treatment for syphilis. It was not given to the Tuskegee subjects unless they asked for it. By 1948 the Nuremberg Code, inspired by revelations of experiments in the Nazi death camps, set standards for medical studies on human subjects. In Tuskegee, things went on as before.
No serious questions were asked until 1972, when a whistle-blower from the phs talked to the Associated Press. Once exposed, the study was ended immediately. That very year, the surviving subjects filed a lawsuit against all the individuals and institutions involved. The government agreed to pay out almost $10m, of which Mr Hendon’s share was $37,500, with free health care for life.
He had confounded expectations by living so long. More than 100 of the subjects died of the disease or related complications, together with at least 40 unwitting wives, and 19 children contracted syphilis at birth. A longer-lasting legacy was black distrust, which continues, of government doctors and clinical trials.
Mr Hendon was too ill to go to Washington when President Bill Clinton apologised, in 1997. Instead, he watched by satellite. But five years later he was in smiling form when Alabama said sorry. “I survived,” he said. “That’s good.”