By Bill Wilson
Bill Wilson © 2011
Thirty years ago the first reports of Kaposi Sarcoma among gay men was reported by the Center for Disease Control (CDC). That report would mark the beginning of Aids, a disease that would mark a generation similar to the way polio marked a previous generation. When I was a young child my cousin contracted polio and as a result was left paralyzed from the waist down. My parents took us to get every preventive vaccine whether delivered by needle or sugar cube. When Aids came along it wasn’t surprising that I volunteered for studies at the National Institutes of Health and at John Hopkins University.
The first study was simply a blood draw by Dr. Shearer at the National Institutes of Health. You came in picked up your paperwork, took it down to the Phlebotomy Department and waited to have someone insert a needle in your arm and fill some vials with your blood. The waiting time would become an issue during my later dealings at the NIH.
At Gay Pride in Washington DC in 1984 I was recruited to be part of the Study to Help the Aids Research Effort better known by it acronym SHARE. It was conducted at John Hopkins University in Baltimore, Maryland. Because of the general lack of knowledge at that time about Aids this study was originally conceived to be a general study of healthy gay men to see what changes might mean a person was getting Aids. The study included over 1200 participants making it the largest medical study of gay men ever. It was expected from the start that this would be a long multi-year study. For the first couple of years before the HIV antibody test was developed, participants were required to bring toenail and fingernails clippings as well as a sperm sample. Because this study was so large, it was used to recruit for other studies, such as the Hepatitis C vaccine.
1987 Study Help Aids Research Effort (SHARE) staff
I have to confess that since I was a baby I’ve had an aversion to needles. When we would go to the doctor to get our polio shots, I would start crying before I even got in the car. So for me the worse part of getting blood drawn for any reason was getting stuck with the needle. I don’t know why but for some reason I never figured out, at John Hopkins they know how to give painless needle sticks. Once when I was getting a shot I think it was the Hep C vaccine, I was in a little room that had a window that looked across the street. When the doctor came in and prepared to give me the shot I looked out the window. I waited and waited and waited. Finally after what seemed forever but had actually been only three or four minutes while still looking out the window I said, “Doctor, am I expected to stand here forever?” He said, “Oh, I’ve been finished for awhile.” I told him that if I wasn’t going to be able to feel it then he was at least obligated to tell me when t was over.
The third research project I was involved in was actually a clinical trial of gp 60 vaccine that was conducted at NIH. To be eligible you had to be HIV negative and agree to practice safe sex (protected sex) during the study. There are usually three phases to any clinical trial. Phase One is giving the drug to several people just to make sure that it isn’t lethal. Phase Two involves giving different dosage levels to a greater number of people to see what dosage level is effective and the Third Phase involves and even larger group of people that are actually divided into 3 groups so that one gets the drug, another gets a placebo and a third groups gets nothing just to act as control. I was part of the Phase Two trial. I was actually the ninth person to get the vaccine and I was the third person at my dosage level which meant before they gave me the vaccine I was hooked up to an IV in case I had a bad reaction to the drug. That procedure made the actual vaccine administration seem rather anti-climatic.
Dr. Clifford Lane and Dr. Anthony Fauci researchers as the National Institutes of Health
When I first signed up for this study they asked if I was willing to share my story with the media. I agreed. That resulted in an appearance on CNN’s “Larry King Live.” I was in the studio with Larry King and the other guests, a doctor and Leonard Matlovich were in remote studios. I was also featured in an article that ran with by picture on the front page of “The Philadelphia Inquirer” While my parents had moved to Florida for health reasons, I still had lots of extended family that lived in the Philadelphia area. I figured if nothing else I would at least learn who in the family still read the Philadelphia paper. It turns out everyone did, but I didn’t learn that for several months. The article ran at the end of January and I heard nothing until I got a letter from my cousin Sue in April. She told me that she had been meaning to write since she read the article because her husband’s brother was dying of Aids. She said that when she went to visit him she never knew what to say. I told her that I felt that the visit was more important than anything she said. I urged her to keep visiting him. She also happened to mention that when she saw the article she had called her brother. He had called my uncle. In April my uncle, who was the family historian, had read it to the family gathered for Easter dinner, which included another uncle and more cousins from my father’s side of the family.
My uncle’s copy of the Philadelphia Inquirer article with my photo.
From my Mother’s side of the family the results were similar but a little bit more sensational as was typical of my mother’s sister. About a week after my letter from Sue, my cousin Judy called an asked me if I had Aids. When I told her no she said she didn’t think so but my aunt I had kept insisting that I did. I told her it was because my aunt hadn’t read the entire article. The lead for the story read, “Bill Wilson has an unusual wish.”
He hopes that the next time his blood is tested it will test positive for Aids.” You had to get a good deal further into the article before it was explained that the vaccine contained only several of the proteins on the surface of the Aids virus so they would be able to tell by my test whether I was reacting only to the proteins in the vaccine or whether I had been infected with the entire virus. Both tests would have turned up positive, but if the vaccine was successful it would only be positive in several spots. Hopefully reaction to those proteins would be enough to cause the immune system to reject the entire virus.
The fact that everyone had seen the article and no one else had bothered to call me would be amusing if it wasn’t so typical of the way my family deals with news they don’t want to hear. By participating in these studies it helped me to feel that I was doing everything possible to find an end to this disease. That was a promise I made at the first memorial service I went to for a person that had died of Aids. It was the words I said to a person who would be the only person I’ve ever held as they took their last breath.
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Bill Wilson is a San Francisco-based veteran photojournalist. Bill embraced photojournalism at the age of eight. In recent years, his photos capture historic record of the San Francisco LGBT community in the Bay Area Reporter (BAR), The New York Times, The San Francisco Chronicle, The San Francisco Examiner, SFist, SFAppeal. Bill has contributed to the Sentinel for the past seven years. Email Bill Wilson at email@example.com.