Last night, I had the opportunity to speak for a few minutes at an event produced by the DC Center built around the heartbreaking and vital book Persistent Voices: An Anthology of Poets Lost to AIDS. I was there not as the Executive Director of National Stonewall Democrats, but as someone who had been a participant in a preventative HIV vaccine trial in New York City in the mid-90’s.
The study I participated in, Project ACHIEVE, was initially set up to determine the rate of new infection in men who have sex with men when participants are also given HIV prevention and education. I was soon chair of the community advisory board for the study and also served on the national community advisory board, where we offered community input about the study. One of the main things we discussed was the idea of informed consent; specifically, how do we make sure that participants in a future trial of a possible preventative vaccine are informed enough about the ramifications and effects of being a participant – especially if the outcome of a successful vaccine would be our bodies creating antibodies to the HIV virus, therefore making us HIV+. You have to remember that at that time, we were still grappling with the fact that being HIV+ meant that you were going to die. With a successful vaccine, we would have a world with vaccine-induced HIV+ people in addition to virus-infected HIV+ people.
Of all the people in the study, I thought I had a handle on what informed consent meant for me and was very clear that I would participate if a vaccine trial came our way. I kept bugging the study leaders to be allowed to participate in the study, but they said that the process was random and had to take into consideration demographics in order to mirror the demographics of the affected communities.
The call came the night before I was to leave for a trip home for the holidays. My name had come up in the lottery and they wanted me to participate. Suddenly, I was hit with indecision. Really? Is this something I really should do? I asked for a few days to think about it, but they said that they needed to start the process – start introducing the experimental vaccine or a placebo into my system – before the end of the calendar year, which meant that I would need to go in the next morning to get stuck.
I hung up and called my Army officer brother with whom I’m very close.
“I don’t think you should do it. It really worries me,” he said when I broached him with it.
“But if I don’t do it, who will?”
“Someone else. Not you. I don’t want you to get sick.”
I thought about that for a moment. The folks at the study said that there was very little chance of actually getting infected with HIV, but that being HIV+, even if it was vaccine-induced, might mean that I couldn’t travel, get a job or – I worried – find a boyfriend.
“You’re a soldier. I worry about you getting hurt all the time. Dying, even,” I said.
“You don’t need to worry. I’m fine.”
“And I’ll be fine. This is my war. This is my front line. Mom and Dad raised us to be selfless, to volunteer, to work to protect our fellows. Since I’ll never be in the military, this is my chance to do that for my people.”
“I get it. I don’t like it, but I get it. I would understand. I reserve the right to worry.”
“Oh. And I love you.”
I’m not a fan of needles, so it’s interesting that I would participate in a vaccine study where they were constantly taking blood samples, injecting me with stuff, taking more blood. They were testing a one-two punch of two products in a double-blind study, so with the placebo, there were several different permeations of what I might be injected with. When the study was unblinded, I found out that I had been injected with product in both arms. No placebos.
The product, while promising, wasn’t effective enough to further the study and my body did not make antibodies to HIV. To my knowledge, I’m as susceptible to HIV infection as the next person. I hoped that I would be one of the few who had been on the front lines when we started to win the war, but this was a battle that we didn’t win.
So, last night, found myself in front of a room of beautiful people, mostly men, mostly African American, and I was suddenly back in a room 20 years ago when the disease was so much more treacherous and we had many dark, horrible years of beautiful, talented and wonderful people dying ahead of us.
And I remembered why I was willing to roll up my sleeves for my community, for my people, in hopes of finding something that would beat the plague back.
We haven’t found it yet, but I think we will. I hope it’s in my lifetime. But it will take young men – and women – who, like me, were willing to literally roll up their sleeves. And we are making a difference on that front. Just last year we received good news on progress being made on the vaccine front.
I’m glad I went to the front lines in the war on AIDS. It made me who I am today and I’m grateful for that.
Editor's Note: If you'd like more information on volunteering for vaccine trials or other information please check out the HIV Vaccines Trial Network. They are a valued resource.