Four subjects were interviewed in sequence.
Subject was asked what the study meant to the people involved, how it started, etc.
Subject—Started with a blood test. Clinic met at Shiloh Church. They gave us shots. Nurse (Rivers) came out and took us in (to John Andrews Hospital). One time I had a spinal puncture—had to stay in bed for 10 days afterward. Had headaches from that. Several others did too (and stayed in bed awhile). I wore a rubber belt for a long time afterward. Had ointment to run in under the belt.
Doctors came every year or so. After 25 years they gave everyone in the study $25.00 and a certificate. They told him he was in pretty good health.
At the beginning he thought he had “bad blood.” They said that was syphilis. (He) just thought it was an “incurable disease.” He was booked for Birmingham for “606” shots but “nurse stopped it.” Some other doctor took blood that time and he was signed up to go to Birmingham. Nurse Rivers said he wasn’t due to take the shots . . . he went to get on the bus to Birmingham and they turned him down. This was some time between 1942–1947.
He did not know he was sick before 1932. They gave them a bunch of shots— about once a month. Then they did a spinal. Nurse would notify them about the blood tests and bring them down.
He had not talked to any of the other participants lately.
He had the shots in his arm. In 1961 he had a growth removed from his bladder. (He is 66). Health insurance paid for it. He paid his bill and his insurance paid back all but $20.
These interviews were done as part of the work of the U.S. Department of Health, Education and Welfare Tuskegee Syphilis Study Ad Hoc Advisory Panel in 1973.
U.S. Department of Health, Education and Welfare, Tuskegee Syphilis Study MSC 264, Advisory Panel, Box 2, Ad Hoc Committee Folder, National Library of Medicine, History of Medicine Division, Bethesda, Maryland.
Question—could all the people in the group afford hospitalization? What would others have done?
Subject—I don’t know. I asked the (government) doctors about it (the growth) and they sent me to my family doctor. The government people didn’t know I had insurance.
He didn’t know of any others in the study who had been in the hospital although one man had become blind after awhile. He hadn’t thought much about whether his disease had been cured. The doctor was seeing him every year, and he was feeling pretty good. He was not told what the disease might do to him. He stayed in the program because they asked him to. Nurse came and got him. He thought they all had the same disease. The blind man had been blind nearly 20 years—had worn glasses awhile, then had become blind.
Question—Did anyone do anything about the blind man’s eyes?
Subject—I think he told nurse. They talked one time about sending him somewhere. Wasn’t treated that he knew of. He (the blind man) never went anywhere and he (subject) didn’t know the details. The blind man is about 75 now.
He knew maybe 15–20 people in the study. The only time they got together as a group was when the government doctors came in.
(This subject was a control)
Subject had come into the program when “they were recruiting up people.” Nurse got him in. He was never told what was wrong with him. He had rheumatism. He has (and had at the time) swollen fingers. He has heart disease—his heart “skips.” When he says “they” he is referring to “that government affair.”
He didn’t always come up to the clinics. Sometimes he was away. He thought maybe Nurse Rivers came and got him because someone told her where he lived.
When asked if he had been sick, the subject said no—he had never been sick. Just slight rheumatism all his life. He really thought they were interested in his fingers. Then he thought they were interested in his heart.
Before Nurse Rivers came to see him no one had tested him. Then he was examined and his blood tested. Nothing was said about his blood although his peculiar heart was later commented on.
He had “never been in the hospital.” But I was for my hernia. Had a pain in my side once. Doctor gave me pills. I’m a pretty unusual person. Two or three years ago I had a headache that lasted about three weeks. Slowed down all my work.
He had known several others in the program. All now dead. He is now 66.
Subject is 81 years old. Had farmed all his life (up to three years ago) and had gone through the third grade. When he got into the program he had been sick. Nurse Rivers said he could get treatments. He was told he had “some funny name thing.” Main thing though was his cataracts. He had them out in 1953 at John Andrews Hospital.
Nurse Rivers had told him to be at the school and they would check them up. Every couple of years (they came.) Nurse Rivers came to the plantation to get them. He first saw her at the hospital clinic (after she suggested that he go to the clinic.)
Subject’s wife interjected that the nurse had said government doctors were coming from the north and had suggested that he join the program. Later he got notices.
The doctors told him different things. They never said he had any diseases. Once they gave him shots in his back. He just got up and left.
They took blood every time. Said they sent it off. Never told him anything. Said the first test was good. Later said it was not so good. The doctors gave them pills and medicines and shots—hip and arm mostly. He didn’t know why they were giving him shots. The doctor told him he had a bad heart, bad circulation, arthritis. He also had falling spells.
Lots of people went to the clinic with him. He didn’t know them all. They all got the same medicine. Nobody ever said anything about his blood. They never told them what was wrong with them. They got a lot of pills. He took some of the pills, not all. He had never been hospitalized before his operation for cataracts. He took a lot of home remedies. Nurse would tell him to come in and get checked over. He saw different doctors over the years. Sometimes private doctors. When he went to private doctors, he had to pay. He didn’t know if they knew he was in the program.
The doctor (he was seeing) now said his blood was good. He had had different shots over the years. Some hip shots. He didn’t know if he had ever heard of penicillin or if he had ever had any. He said he had never heard of syphilis. He had heard of “bad blood” but didn’t know what it meant.
Subject had gotten into the program when people were going around giving treatment. He didn’t know what kind of treatment or what the treatment was for. They drew blood. Had them come up at different times. They never told him anything. Never said they tested the blood. Never said anything was wrong. Did not say why they were testing (the subjects).
The first contact he had with the study was in church. “Lady came down talking about what they would do.” It was on a Sunday. Said go to city hall for blood tests. He went. Then he got a letter saying they wanted to see him. He got a letter each year.
Each year they took blood. Sat down and talked. Gave them some medicine. He went every time. No one said anything to him about his health. Nurse Rivers asked him how he was.
Asked about his health, subject said he’d been getting along o.k. He had had shots (sometime) in his arm. He had seen no private doctors. Nothing was said about his blood. He had no good friends in the program. Had known some—all dead and gone. He didn’t know the causes of death (of his friends).
He didn’t know why they wanted him to be in the program. He didn’t think it was helping him. He just went along.
The subject is in his 70’s. He had gone through the second grade.