A long-time HIV survivor found community – and hope – by joining a cure research advisory board

Bill Hall
Bill Hall is working toward a cure for HIV as a member of the community advisory board for Fred Hutch-based defeatHIV. Photo courtesy of Davies Chirwa, DC Productions

I tested positive in June 1986. I was called to the nurse’s station, and as soon as the nurse, who had taken me to a private room, told me that something came up in my blood work, I knew I was HIV-positive. Another blood test was performed, and even though I knew the results, the walk to the doctor’s office, which normally took five minutes, took me an hour due to the fear and dread of actually hearing that I was positive.

I was directed to a room with nothing but an old desk and two plastic chairs. I sat there for 45 agonizing minutes, every nerve in my body screaming at me to run. Finally the door opened and the doctor walked in, sat down, didn’t even acknowledge or look at me, and flatly stated, “You’re positive.” He quickly stood up and all but ran out of the room, leaving me feeling like I had been punched in the stomach. I didn’t know if someone was going to come in and counsel me or if I was just finished. I finally decided to leave, and as I walked out the door, I got a glimpse of just how much my life was about to change. A janitor entered the room I had just left, dressed in a face mask, thick gloves up to his elbows, holding a spray bottle of Clorox.

When I stepped outside, nothing had changed – the sun was shining, birds glided around the perfect blue sky and the warm breeze that flowed around me did not care that I was just given a death sentence. My first thought was, “Good, I don’t have to kill myself now. I have a disease that will do that for me.”

I was in the hospital for depression, something that I have suffered with all my life. I had attempted suicide six times, and while deep down inside, I was happy that my painful existence was about to end, I was terrified about the process of dying I was about to go through. I said a silent prayer to God, begging Him to let my death be quick and painless. And for the millionth time, I asked God to forgive me for being gay.

The ‘gay disease’

At this point, AIDS was being called the “gay disease,” and preachers around the country were feeding the fear and discrimination by yelling that AIDS was God’s punishment for gays. It was bad enough that as children we had to endure bullying, beatings, sexual abuse and even murder because we were gay. Just when it seemed we were making headway with acceptance, AIDS came along and put us back in our place, the closet. The fear and blatant condemnation of anyone that was HIV-positive caused anyone with the disease to fiercely hide their diagnosis.

I was living in Reno, Nevada, at this time, and the doctor who gave me my first prescription for AZT [an early treatment for HIV] stated that Reno had absolutely no services for people with AIDS.  “If I were you, I would pack my bags and go to Seattle,” he said.

With great trepidation, I found myself on a flight to Seattle a week or two later. I had lived in Seattle for a long time, and the last two years I was there, I watched my sister go through her final stages of alcoholism. She had been my rock and safe haven when life became too hard for me. Just being near her had made me feel safe. I knew if I went back to Seattle, I would see her everywhere I went. For two months after I arrived, I could not leave my apartment.

When I finally did come out, I registered at the Madison Clinic [the HIV/AIDS clinic at Harborview], making sure nobody was around to see me going in. While I was waiting for my first exam, I saw a brochure for support groups for people with AIDS. I couldn’t imagine anybody openly walking into such a place, the cost of exposing your status just wasn’t worth it. But I finally decided that I couldn’t do this alone; the fear of discovery kept me a prisoner in my own home, and I was so tired of living in fear.

Hope resurfaced

Ten years came and went. I had outlived four support groups, and the loss of all those amazing souls was staggering. How do you make sense of all that loss? One day I had visited three people in the hospital, went to two memorial services and two funerals. When I got home, all I could do was cry, pleading with God, “Where is the cure?” This really tested the foundation of my faith.

 I have been positive now for almost 30 years, and had all but given up on the concept of a cure. Somewhere along the way, finding a cure for AIDS shifted to treating AIDS as a chronic disease. While it is true that medications now prolong our lives, it has given us a false sense that the battle is over. People no longer worry as much about catching this disease. They think that if they do, all they have to do is take a pill. But people are still dying of AIDS. In the past few years, four of my neighbors died. We just aren’t dying as fast as we used to. Fatigue has shielded us from seeing that the urgency is still there.

One day I received an email from Michael Louella, the community advisory board coordinator for defeatHIV, [a Fred Hutch-based research consortium working on curative therapies for HIV]. My interest was immediately piqued, and I decided to give this group a try. I believe in its goal – to aid in the search for a cure. Hope resurfaced.

I was fortunate enough to attend a field trip with other community advisory groups to a racism exhibit at the Pacific Science Center, and as I listened to the conversations that went around the table afterwards, excitement filled me, and I knew I was right where I needed to be – a vital member of this amazing group of people.

I fully believe that to achieve the goal of a cure for AIDS, it will take everyone associated with AIDS to develop the mindset that a cure is within reach and to see themselves as a part of the whole. One organization cannot achieve this alone. It will take all of us affected by AIDS. The cost of AIDS has been high and the loss of all those amazing souls too great. To do nothing would be devastating.

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