Rob Newells is a member of the Community Advisory Board for the amfAR Institute for HIV Cure Research, Executive Director of the AIDS Project of the East Bay, and was ordained as a minister at Imani Community Church in Oakland, California, in December 2018. A community advocate since 1999, he has worked nationally and internationally to address HIV-related stigma and increase biomedical research literacy.
African Americans account for 44% of HIV diagnoses in the U.S. and close to half of all AIDS cases, even though they comprise only 12% of the population.* In observance of National Black HIV/AIDS Awareness Day on February 7, amfAR spoke with Rob about his personal and professional journey.
amfAR: How did you first become an HIV/AIDS advocate?
Rob Newells: I was living in Oakland in '96 and '97, and I'd made some friends who were living with HIV. I'd been to appointments and food pantries with them and seen some of the issues they were having, and I decided that once I got settled I would find a way to volunteer. So when I moved to North Carolina in the beginning of '99 I helped start a program with the AIDS Service Agency of North Carolina focused on educating young black men about HIV.
amfAR: Can you describe the work of the AIDS Project of the East Bay (APEB)?
Newells: We just celebrated our 35th anniversary. When we started back in '83 we provided HIV education and testing and linkage to care. That is still our core, but now we also do screening for hepatitis C and STIs. We have a couple of housing programs, and a program focused on youth and substance use prevention. We have a food pantry and a clothing boutique where we give away clothing. We still host support groups. We have a licensed clinic, and when we have a provider we offer regular primary care and HIV specialty care, but right now we're linking folks externally.
amfAR: What can be done to reduce the high rates of HIV among African-Americans?
Newells: We have to address communities and people beyond just their HIV. It's been my experience that folks are less focused on their healthcare when they're insecure about where their next meal is coming from, or when their housing is unstable. Also untreated mental health and substance use issues have to be addressed in order for any of our treatment and prevention options to be successful. You really have to think about the whole person, because HIV is only one piece of what folks deal with.
amfAR: What led you to start Imani Community Church's first AIDS ministry in 2010 and to become a minister there in 2011?
Newells: I tested positive in 2005—I had a new primary care physician call me while I was at work and ask if I had ever tested positive for HIV before. So after that awkward conversation I hung up the phone and said, "Well, God, what do you want me do with this?" And I sat with it for a few years.
In 2010 Dr. Robert Scott died—he founded AIDS Project of the East Bay—and something told me I needed to start an AIDS ministry at Imani Community Church. At that time there was a minister at Imani named Rhonda who was also doing work at the Allen Temple Baptist Church AIDS ministry, which Dr. Scott had also started. Every time Rhonda got on the mic at Imani she would say one day somebody from our church is going to do this work. She didn't know at the time that I was sitting in the congregation living with HIV and that I had previously worked for the National Minority AIDS Council. And so with Dr. Scott dying and Minister Rhonda's encouragement and my history, it all came together.
amfAR: How is your work as a minister connected to your role at APEB and your other advocacy work?
Newells: I became executive director at APEB three years ago, after previously serving on their board of directors. I wouldn't be doing this work if it weren't for my spiritual calling. I'd had a comfortable job as the safety officer for Children's Hospital Oakland for 11 years when I was asked to take over at APEB. That happened to be in the middle of a revival at church. So again prayer was what allowed me to quit my job and accept the role at APEB, which was faltering at the time and at risk of closing. I believed in the mission and the people at the agency, so I decided to give it a shot.
amfAR: You've written about the mistrust of PrEP among many black MSM and even among some professionals in the HIV field. Do you think there has been any change in attitude?
Newells: I think there has been some improvement. Education is the biggest piece. The more people learn, the longer they hear about it, and the more people they hear from, the more comfortable it gets. But I still hear providers say that they are afraid to tell their clients about PrEP because they worry they're going to go off and have lots of sex and get STIs. I also hear that concern from some community members, because we've heard condoms, condoms, condoms, and nothing but condoms for over 30 years. In my community there are African Americans who honestly believe that the government wants us to use PrEP so that we'll have more unprotected sex, get AIDS, and die. There's still that level of mistrust among a lot of people but I think it's improving.
amfAR: Why did you join the Community Advisory Board of the amfAR Institute for HIV Cure Research?
Newells: I have been doing biomedical prevention research advocacy through AVAC (formerly the AIDS Vaccine Advocacy Coalition) since 2012 and I'd been working on PrEP since before it was approved by the FDA. I raised up other folks in my agency and elsewhere to be great PrEP advocates and I was looking for an opportunity to do something beyond PrEP. My first exposure to cure research was at the International AIDS Conference in Durban, South Africa, in 2016. I met an amazing cure advocate there from Uganda who kind of lit a fire under me. So when the opportunity came locally to participate and it was amfAR—which is a big deal—and there were no black men on the CAB, I thought I should absolutely take the opportunity.
amfAR: What would a cure for HIV mean to you personally?
Newells: Pill fatigue is real. I don't think anybody with HIV wants to pop pills every day and I'm not one of these people with a one-a-day regimen. So leaving behind popping a handful of pills every day would be wonderful. Undetectable is untransmittable, so while I'm on my meds I don't transmit, but not being on meds and not transmitting HIV to anybody else would be wonderful. It's a weight that would be lifted.
Read the transcript of Rob's address to the 2018 amfAR Cure Summit.
*U.S. Centers for Disease Control and Prevention: HIV Among African Americans, July 2018