USCA: What Kind of Advocate Are You?

September 24, 2015

Minister Rob Newells is a member of the staff at Imani Community Church and serves as Board Chair for AIDS Project of the East Bay in Oakland, California. He is also a member of AVAC’s PxROAR program.

During the Black PrEP Summit pre-conference and throughout #USCA2015, advocates and researchers discussed and debated how to get more African Americans on PrEP. When exactly did we shift from advocating for our communities to advocating for the pharmaceutical industry? As advocates, what is our goal? Are we biomedical prevention and treatment advocates with the goal of getting as many people as possible on effective prevention and treatment drugs? Are we community advocates with the goal of being the voice for those people who are living with or at-risk for HIV infection to make sure communities get what they want and need? Can we be both at the same time?

At the International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention in Vancouver a couple of months ago, researchers presented findings of the ATN 110 study of gay and bisexual men ages 18 to 22. At the outset of the study—up until about week 12—black participants had adherence that was close to, though just under, the threshold of four doses per week believed to be needed for protection in men who have sex with men. But adherence dropped off dramatically after week 12, which was also the time where clinic visits went from monthly to quarterly. By week 48 median drug levels were barely above zero indicating very little use of PrEP. Why?

Advocates and researchers are asking otherwise healthy young black men with an understandable mistrust of science and medicine shaped by historical and contemporary issues of prejudice and miscommunication to commit to seeing a doctor and getting blood drawn four times a year and taking a pill every day. When they don’t, we call them ignorant or uneducated. We target them and shame them for not jumping on the PrEP bandwagon. What kind of advocate does that?

It has been said that with effective treatment and PrEP we have all the tools we need to end the HIV epidemic in the United States, but during NMAC’s Master Series on Race at USCA Dr. Victoria Cargill expressed an opinion that “we will never treat our way out of HIV.”

Yes. Treatment works, but treatment can’t work by itself. Everyone knows that structural inequities must be addressed in order to end the HIV epidemic. Everyone knows that stigma must be addressed in order to end the HIV epidemic. Everyone knows that HIV criminalization must be addressed in order to end the HIV epidemic. Everyone knows that what Dr. Cargill said is true. So, what kind of advocate are you?

I am a PrEP educator in my community. I am an advocate for increasing access to PrEP in my community. I am not a PrEP advocate. I am a community advocate through and through. Before I was an advocate (or a Board Chair), I was a same gender loving black man from Deep East Oakland living with HIV. I made a commitment to my community to give them the truth and represent them honestly with no strings attached. In the words of the Dr. Seuss’ Horton, “I meant what I said, and I said what I meant. An [advocate’s] faithful one-hundred percent.