Proud to Be an HIV-Vaccine Test Subject

HIV-vaccine research only moves forward because of volunteers. One such subject is Joseph Caputo, who may now test false-positive for HIV—and whose dates think he’s diseased.

I didn’t realize my date thought I had HIV until he called me “diseased.”

We had spent a few days going through the typical getting-to-know-you script. Over chocolate martinis at my favorite café, he told me he studied nursing and worked in a nearby coffee shop. I told him I enjoyed dark comedies. I also said I volunteered in one of the current HIV vaccine trials. “I had my second injection this week,” I said. “They use this Biojector 2000 that looks like a gun from a James Bond movie.”

Ten minutes later I was drinking alone. I didn’t even get a hug goodbye.

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A vaccine is the world’s best chance for a sustainable and scalable intervention against HIV. Researchers have been testing vaccine candidates for over 25 years. The $6-billion-plus effort, however, has yielded only one celebrated success: in 2009, a vaccine given to 16,000 volunteers in Thailand was reported to reduce the risk of catching HIV by 31 percent.

The search for an HIV vaccine has also had a newsworthy failure. In 2007, a clinical trial was shut down early because the vaccine did not work. The 3,000 participants of the STEP study were told that their exposure to the vaccine may have even increased their risk of HIV infection, specifically if they were uncircumcised men or possessed antibodies to adenovirus type 5, one of the vaccine’s components.

HIV-vaccine research may move slowly, but it only moves forward because of volunteers. Recently, a combination of bad press, stigma toward HIV/AIDS, and misinformation about vaccination are forcing research centers to work harder than ever to recruit the thousands of people they need.

In the United States, vaccine-testing sites are looking for HIV-negative volunteers from populations most vulnerable to infection, such as men who have sex with men (MSM), and transwomen. These clinics face the challenge of convincing potential volunteers that the HIV vaccine is safe, does not cause HIV infection, and is a unique way of giving back to your community.

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I encounter one of two reactions when I tell friends that I’m volunteering in an HIV vaccine trial: “What’s wrong with you? Do you have HIV now?” or “Wow! I wish I could be part of that!”

I respond to negative feedback with an explanation about how vaccines work. I explain that the HIV vaccine is just like the flu shot. It will help my body make antibodies against HIV and may increase my odds of remaining uninfected. The short-term effect is that if I take a rapid HIV-antibody screening test, I may be told that I’m false-positive. This means that I have antibodies for HIV—but not the actual virus.

“People aren’t as concerned with HIV infection anymore,” Maynard says, reasoning that 25 years of failed vaccine research and the improvement of HIV drugs have desensitized the gay community to the disease. “It’s worked against us.”

The first step of becoming part of any HIV-vaccine clinical trial is to qualify. The researchers want to test the vaccine on people who are at risk for HIV so they can collect statistical significant data, so I had to tell a number of strangers about my relationship with drugs, alcohol, sex, and disease before I could be enrolled. Half of participants receive the vaccine and half receive a placebo. Neither the practitioners nor the volunteers know who is what group. The researchers follow the participants until enough people seroconvert through unprotected sex or sharing needles to make a conclusion about the vaccine’s success or failure.

At-risk status does not imply that a participant regularly participates in crystal-meth-induced orgies. Nor does being gay, bisexual, or trans put someone on an HIV waiting list. Clinicians define at risk as being in a non-monogamous relationship and having hooked up once in the past six months.

The final step of enrollment was for the trial’s principal investigators to make sure I was circumcised, which was as awkward as it sounds. Recent studies have found that male circumcision is one of the most successful strategies to prevent HIV, HPV, and other sexually transmitted infections, especially among heterosexual men. Equivalent research has not been done with gay or bisexual men, but the failed STEP study did find that uncircumcised volunteers were more likely to become infected by HIV than their circumcised peers were. (The cause of this trend is yet to be determined.) Current vaccine trials only study circumcised men as an extra safety precaution.

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Volunteers give very personal reasons when asked why they are part of an HIV vaccine trial. Ray, the San Francisco Leather Daddy featured on SFIsReady.org, volunteered to give back to the people he’s lost. Others sign up because they are friends or partners with someone who is HIV positive and don’t want others to get the virus.

“There’s still a core of guys who care about the community,” says Jim Maynard, Associate Director for Community Engagement at the Fenway Institute in Boston. “The main motivator has been altruism,” he says. (The $50 cash compensation with every visit probably doesn’t hurt.)

Maynard has six years’ experience recruiting volunteers at clubs, LGBT events, and on chat rooms; each year his job gets more difficult. He cites shifting attitudes toward vaccines and HIV. “People aren’t as concerned with HIV infection anymore,” Maynard says, reasoning that 25 years of failed vaccine research and the improvement of HIV drugs have desensitized the gay community to the disease. “It’s worked against us,” he says.

Maynard is hoping the new “I Have a Heart On” campaign will play to potential volunteers’ altruistic motivations. Research clinics have the greatest success when current vaccine volunteers recruit their friends, but when reaching out to the general public, the Internet has become the primary source of new participants. The campaign features hunky men in tight jeans displaying their hearts on Facebook, Craigslist, and Gay.com—digital watering holes used by men and transwomen.

The stigma surrounding the HIV vaccine seems to become less of an issue once a person volunteers. “We’ve not seen any patterns of concern,” says Dr. Lindsey Baden, M.D., Principal Investigator for the HIV Vaccine Trials Unit at Brigham and Women’s Hospital in Boston. A study looking at negative social impacts from another vaccine trial found that only 18 percent of participants encounter any kind of stigma while volunteering. The majority of the cases were related to misunderstandings from friends, partners, and family members: many believe the vaccine leads to HIV infection or puts others at risk. The most severe impacts—losing a job or being denied insurance because of study participation—were reported by less than 1 percent of volunteers.

The future of the HIV vaccine is still unknown. It could be decades before one is on the market. Doctors may recommend the shot around the same time they make appointments for the hepatitis or HPV vaccines. Rapid tests that detect HIV in the blood will probably make false-positives a moot concern. Right now, the only way to develop a preventative HIV vaccine is to study it in people. “Vaccines are some of our safest interventions,” Dr. Baden says. “This is just one of the greatest problems of our generation, and this is the key way to address it.”

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The hospital room where I get the vaccine is dull but comfortable. The researcher asks if I need a blanket, pillow, or anything to eat. It’s like a spa vacation, except you’re there to give blood and be shot up with viral DNA. As I lie down, the funny blonde clinician tells me about her early years researching infectious diseases in Africa, before we gossip about boys. I tell her about my date and she asks me to fill out social-impact forms—bureaucratic records of how my involvement in the trial has affected friendships, relationships, and work. I am always thorough.

I received my third injection a few weeks ago. It hurt a little, like being punched in the arm. The tenderness went away after a few days. I took my temperature; I measured the redness in centimeters per the clinician’s instructions.

I may have lost the nursing student that works at that coffee shop, but I know I’m doing something that will make a difference. I don’t have a lot of money and I don’t have a research degree, but I have myself. And that’s what I’ll give.

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—Photo Sarah G…/Flickr

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About Joseph Caputo

Joseph Caputo is a graduate of Boston University's Center for Science and Medical Journalism. He writes about science and pop culture from his man cave in Salem, Massachusetts.

Comments

  1. You are an incredible person. I’m female born female, so it looks like they don’t need me just yet, but I’m going to spread the word.

    Thank you for writing this.

  2. Joseph, thank you for your volunteerism. Future generations thank you too. :)

  3. Stefany Cunningham says:

    I just wanted to say that i was a participant in the I-PREX Global, one pill a day study at Fenway Health. I thought to myself that this would be a great way for me to give back something to a community that really cares about me, and one that I love dearly.

    My study was conducted at Fenway health in Boston Ma. One of only a handfull of research sites in the world. I was treated awesome and the staff at Fenway is probably the best I have ever encountered.
    The study in and of itself was huge and a very positive step in the fight to prevent the spread of HIV.

    I have since become an advocate of safe sex and hand out care packages with condoms and lube to everyone I might think could be at risk.

    I also found out that the HIV Virus is very well rooted in the Trangender community as well. One report I recieved from a health care worker that performs tests on girls in the Boston metro area told me that 1 in 3 transwomen tested positive for HIV.

    I think that these studies are a very positive way to combat this dreadfull disease. I would urge anyone that qualifies to become a research participant. Studies are there for our protection. To help us as human beings to stay alive and healthy. So I would urge anyone that were to read this comment, to drop by The Fenway Institute and get screaned for anyone of the current studies or visit……

    http://www.fenwayhealth.org

    Stefany Cunningham

  4. Thank you Joseph for your insightful and inspiring article!

    My name is Genevieve Meyer and I work for the HIV Vaccine Trials Network (HVTN). The HVTN is the coordinating center for DAIDS-funded HIV vaccine trials, including the study that you (Joseph) participated in.

    For any readers out there who are considering joining an HIV vaccine study, I’d like to reiterate one of Joseph’s key points: you cannot contract HIV from the vaccines! There is no actual HIV in the vaccines, only synthetic pieces of the virus. However, the vaccines are designed to cause the body’s immune system to develop an antibody response. This means that for some study participants, standard HIV antibody tests may come back positive even in the absence of actual HIV infection.

    In order for study participants to avoid any sort of misdiagnosis, the study site can provide accurate HIV testing for as long as it’s needed. If a participant is unable to return to the study site, the HVTN coordinating center can also ensure that accurate testing is provided. We could not do our work without the help of our many volunteers and we are committed to making trial participation as stress free as possible!

    Our thanks again to Joseph and the thousands of other volunteers who have given their time and energy to the effort of helping find an effective HIV vaccine.

    Sincerely,

    Genevieve

    Genevieve Meyer, MA, MSW
    Project Manager, Community Education Unit
    HIV Vaccine Trials Network
    Fred Hutchinson Cancer Research Center
    [email protected]
    206 667-5300
    http://www.hvtn.org

  5. how do you become a test subject for an HIV cure?

  6. Skull Bearer says:

    I wish I could join in, this sounds amazing. Unfortunately I’m an asexual cis female, so I really don’t think I’d be much help :(

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