January 5, 2016
What do you do when the people responsible for implementing PrEP education programs don’t trust the science? What if the outreach workers and HIV test counselors believe they’re required to “push” PrEP at the expense of behavioral interventions that have been the focus of prevention programs for years? These are people in prime positions to provide PrEP education to key populations, but suggesting that otherwise healthy clients start a daily medication for prevention is a tough pill for some front-line staff to swallow.
I am a black MSM. I serve at a community-based organization where a large percentage of both the clients and employees are black MSM. One of the known barriers to PrEP implementation among black MSM is medical mistrust. Those barriers don’t just exist among clients; they also exist among members of the HIV workforce tasked with increasing PrEP awareness in their communities. If members of the HIV workforce don’t trust the medical establishment or clinical research or pharmaceutical companies or government agencies, how do we expect them to provide unbiased information about PrEP to the people who need it most?
With all of the good work HIV prevention research advocates have done educating the public about PrEP, there has been more than enough misinformation disseminated about PrEP to create and encourage lingering doubt in the minds of those who are already mistrustful of the medicalization of HIV and the perceived influence of pharmaceutical companies on the HIV prevention agenda. After the 2015 National HIV Prevention Conference in Atlanta, I listened to staff members who had attended as they reported back to staff that stayed behind:
- “There are lots of things we still don’t know.” (Never mind that we know HIV incidence in our Black MSM community is an overall 32 percent, surpassing rates in many populations in sub-Saharan Africa.)
- “We need more information.” (Never mind clinical trials and real-world evidence showing that PrEP is safe and effective and therefore FDA-approved and WHO-recommended.)
- “There are still questions about the long-term effects of the drug.” (Never mind that we have more than a decade of experience of Truvada in people who are HIV positive.)
- “People who take PrEP stop using condoms, and STI rates are increasing.” (Never mind the fact that STI rates started increasing before most people had even heard of PrEP. Furthermore, CDC PrEP protocol recommends STI screening, and treatment if necessary, every three months.)
So what do we do when the people responsible for implementing PrEP education programs don’t trust the science?
If I could talk to all of the PrEP-hater educators, I’d tell them that I wish Truvada had been available for HIV prevention when I was treated for syphilis in 2003. It took several months to get to a syphilis diagnosis because I was treated for a skin rash and gout and had a sigmoidoscopy (an invasive large-intestine probe) before the doctor even ordered an HIV test. (This was before rapid testing was widely available, so I had to think about all of my risky behaviors for a couple of weeks before I got the call that the test was negative.) It was the only time I had ever been worried about HIV infection. It took a while longer before the doctor ordered an STI screening, discovered the syphilis, and ordered the appropriate treatment.
After dodging that bullet, I would have jumped at the chance to protect myself from HIV infection by taking a pill every day. I was in my early thirties; I was a personal fitness trainer in Washington, DC with a good day job; and I had a fairly active sex life. Sometimes I used condoms. Sometimes I didn’t. I had never had any concerns before, but that syphilis scared the hell out of me. It didn’t scare me after I found out what it was because syphilis is totally treatable. It scared me when I thought that I might have been infected with HIV. (It didn’t, however, scare me enough to make me increase my condom use to 100 percent consistently and correctly.) If a pill a day could take the worry of HIV infection from me, I would have been all for it. I wouldn’t have been concerned about long-term side effects or toxicities. I was concerned about living.
If Truvada had been available as PrEP when I tested positive for syphilis in 2003, I probably wouldn’t have tested positive for HIV in 2005. The silver lining is that PrEP is available now. There are black MSM now – who like me then – would jump at the chance to protect themselves from HIV infection by taking one pill every day during their season of risk if they could have accurate, unbiased information about PrEP.
To all of the people responsible for implementing and educating communities about PrEP who don’t like PrEP, I say, “It’s not about you.” Your questions have been asked and answered. PrEP works (and is safe and effective) when it is taken according to the prescribing guidelines. Don’t let your personal or professional biases and misinformation become a barrier to key populations like black MSM accessing an HIV prevention option that might be right for them. PrEP is not appropriate for everybody, but everybody needs to know about PrEP. Get out of the way.
Rob Newells is the newly appointed Executive Director of AIDS Project of the East Bay; he is minister and founder of the the HIV program at Imani Community Church in Oakland and is a PxROAR member since 2012.