Oakland's HIV Epidemic Is a Tale of Two Cities
In light of the federal government plan announced in February 2019 to end the HIV epidemic in the U.S., TheBody has created a new series called Eyes on the End. This series will include a snapshot of the HIV epidemic in each of the 48 counties and seven states targeted within the plan. These profiles aren't meant to be the definitive story of the epidemic in each locale, but rather -- through sharing some basic statistics and interviews with a few key stakeholders -- to provide some context for what's occurring there, and what it will take to end the epidemic in that area.
The Big Picture: HIV in Alameda County, California
The county that contains the city of Oakland is pushing down its HIV numbers more slowly than richer San Francisco across the bay, but it's on track to show better data by the time it cohosts the big International AIDS Conference next year.
Need-to-Know Stats About HIV in Alameda County
Of all county residents, 0.4% are living with HIV, with the majority of them living in the city of Oakland.
At 15.2 diagnoses per 100,000 people, the county's HIV rate in 2015 to 2017 was slightly higher than the national average of 11.8 per 100,000.
Reflecting national trends, between 2015 and 2017, the vast majority of new diagnoses in the county were in men who have sex with men; 38% of all diagnoses were in African Americans (who make up 10% of the county), 25% each were in white and Latinx people, and 10% were in Asians and Pacific Islanders.
HIV rates in the county overall have declined steadily between 2006 and 2017 --dramatically so in African Americans, particularly among African-American women.
Between 2014 and 2016, 87% of people diagnosed with HIV in Alameda County were linked to care in three months if they had labs done on the day of diagnosis. Among people living with HIV in the county, 57.5% were retained in care in 2016, and 68% were virally suppressed that same year.
Successes and Challenges Facing HIV Service Providers in Alameda County
We spoke with the Rev. Rob Newells, executive director of APEB (formerly AIDS Project of the East Bay), an HIV/AIDS prevention and treatment services agency in Alameda County. He was diagnosed with HIV in 2005.
Rob Newells: I became E.D. [executive director] here totally by accident. I grew up in California but started doing outreach work in North Carolina in 1999, then worked for national people of color–based HIV organization (NMAC), then moved back here in 2004, tested HIV positive in 2005, then started a faith-based HIV education ministry at my church in 2010, doing a lot of community advocacy. I started working with AVAC on biomedical HIV prevention techniques before PrEP [pre-exposure prophylaxis] was approved. I was invited to join the board of directors of APEB in 2014, when they had just lost a longtime E.D., so they were looking for a new one. We went through a few, then the board asked me to step in and said they were going to close otherwise, so I quit my job as safety officer for the Children's Hospital Oakland and came on board here in 2015.
We're based in the City of Refuge UCC church, in a big old union hall. APEB was started in 1983, by [the heroic black doctor] Robert Scott, a year after the start of San Francisco AIDS Foundation, because black men were coming in with AIDS symptoms and weren't getting the same education about prevention that gay white men in San Fran were getting. APEB was a program of the Pacific Center for Human Growth in Berkeley, then became its own nonprofit.
We've been in Oakland ever since, handing out condoms and offering education, doing HIV and hep C testing. The majority of people we serve on both the prevention and care sides are African-American men who have sex with men. We have a licensed community clinic, housing programs, youth programs, substance use counseling, a PrEP access program. Most of our clients qualify for MediCal, the California Medicaid program, and our navigators work through the Gilead patient assistance program when necessary.
Tim Murphy: How would you describe the HIV situation in the county?
RN: For the last 13 years, we've had between 200 and 300 diagnoses a year. We had 206 in 2017, while across the bay in San Fran they went from 523 in 2008 to 221 in 2017. San Francisco had a big dropoff after PrEP was approved in 2012, but the big PrEP study recruited from San Fran, but not Oakland. It's hard to recruit from here for SF studies because that bay is a big barrier for folks. San Fran is resource-rich. SF city and county will put more of their own money in if state or federal money drops off, but Oakland doesn't have that luxury. San Fran also has more robust data, whereas we've got someone here doing data only in the last few years.
TM: Do you think dramatic gentrification in the Bay Area has played any role in HIV rates?
RN: I'm not sure. It's definitely driven up the homeless population, so it's given us more areas [such as encampments] to go into [to do prevention and linkage to services] rather than just shelters. And we're providing not only HIV and hep C testing but ponchos, food, and water. These encampments are almost cities in and of themselves. The other day, someone posted on Facebook that a guy over at a Home Depot was trying to pay migrant workers to clear out homeless camps. My testing and outreach partners saw that and decided to take our mobile unit over there, and they found a new positive [diagnosis] in the process.
Another outcome of gentrification is that people have had to move an hour away from where they grew up to afford housing, to places like Contra Costa County. So they're getting services not where they live, but where they work.
TM: So how would you summarize the big picture?
RN: We're just getting started with our Getting to Zero efforts. The big global AIDS 2020 conference will be held both here and in San Francisco, so that has facilitated some cross-bay collaboration. I'm co-chairing the local planning group for the conference. If it's coming to the city where I was born and raised, I'm going to make sure that Oakland is not a footnote. HIV-wise, San Francisco looks like Europe and Asia -- and Oakland looks more like Latin America, Africa, and the American Deep South.
TM: What have your successes been?
RN: In workforce development, I think the folks we have working for us have moved [into a different motivational space]. Previously, we were not getting PrEP information to the community like we should, because the folks responsible for PrEP testing and outreach didn't believe in PrEP. But my experience coming from AVAC has shifted a lot of the culture in the agency, and folks have learned more. My staff are now the PrEP experts in the Bay Area.
As for agency demographics, out of 15 employees, everyone is African American except for two white people, three including myself are HIV positive, and at least two are on PrEP. And I now have one trans man and two trans women on staff.
We're starting a new education and training team this year, because our staff has been called on so often by clinics to provide cultural competency around serving patients who are LGBTQ, of color, and/or living with HIV. Our staff now teaches local community clinics about PrEP. We started a PrEP program even before the county gave us funding. We based it on the Brothers Study, looking at PrEP uptake in gay black men, and we learned that we would not get people to take PrEP on first contact with them, but that we'd need to reach out four to six times and also address other issues they had around housing, food insecurity, and employment.
TM: Where do you feel frustrated and stuck?
RN: There's no STI [sexually transmitted infections] clinic in the county, so that's one of the things we're trying to work on, being able to do rapid HIV and hep C testing in a clinic where we can test for other STIs. We have an arrangement with UCSF [University of California, San Francisco] nursing school where one of their instructors comes Thursday afternoon to see patients. We're the only agency in the area with its own clinic. The frustration is that we know that black men are not proactive with their own health care and only go to the doctor when their arm is falling off. They're not going to go to a so-called AIDS clinic. So the frustration is trying to figure out how to make sure we're reaching folks who don't think they're at risk, because that's a challenge to getting people HIV-tested and then on HIV treatment or PrEP.
Also, in our environment where we have a gentrification-driven housing crisis, it's a tragedy that the HOPWA [federal assistance for housing for people with HIV/AIDS] program that we've been in for two years now is slow to pay. We have confusion about how we're supposed to invoice. On our side, some of the reporting for that is really complicated.
TM: What would you do with more funding?
RN: We won't take more Ryan White funding. We stopped our Ryan White program. It's more hassle than its worth because we see very few Ryan White–only clients -- almost all our clients are covered by MediCal. You can't use Ryan White funding for indirect services, and the $80,000 a year we were getting from Ryan White wasn't enough to cover our rent, never mind salaries. We had an $18,000 monthly lease and it's going up to $22,000 for less space, and the only reason we needed the space was for drop-in Ryan White clients. We couldn't put more than $10 per client of Ryan White money toward food. These are all things we can provide outside of Ryan White, some of it now with Gilead money.
TM: Tell us some stories.
RN: What pops into my mind first is that in our clinic, which is open only one day per week, we have an electrolysis provider that some of our transgender clients go to. Initially the provider took only cash and was not enrolled in MediCal. Our trans male staffer told the provider, "Some of our clients have to turn tricks to pay you, whereas they could give you their MediCal cards if you'd enroll." So we got her enrolled to give more of our trans clients access to her. We're trying to break down barriers like this to get clients in here. The church that we're based in also has a big trans gospel choir, called Transcendence, and the head of the church has been working on HIV issues for 35 years.
TM: What are your goals for the coming year?
RN: Again, developing our new education and training team. I'm working hard on AIDS 2020 to make sure that the East Bay is well represented there. And I'm trying to build infrastructure for my staff to make sure that everyone is a leader and has their own projects going on. I've already given my letter of resignation to the board to leave at the end of 2020, so my big goal is to make sure the organization is sustainable. That'll be my fifth year and I'll be 50 years old, and my fiancé and I want to move to L.A.
Positive POV: Raymond Brickhouse
Raymond Brickhouse, 51, of Oakland, is a dorm supervisor at Treasure Island JobCorps Center and a former volunteer and case manager at APEB. He was diagnosed with HIV in 1994.
Raymond Brickhouse: I grew up in Denver, and when I did my first drug rehab there in 1994, they HIV-tested me and it was positive. I expected it because of the lifestyle I was leading. I probably got it through sex. I really didn't have an emotional reaction. I was like, "OK, this is just something I have to deal with." I actually got in trouble at rehab for not having a breakdown situation. They told me, "You're not working your program, because you're not taking this the way we want you to take it." They wanted me to be devastated. I did think I was going to die, but I also felt that whatever was going to happen was going to happen.
From there, I stayed in my addiction for a long period of time and was in and out of incarceration, on and off my HIV meds, and not really taking care of myself. But toward the end of a prison sentence, I met my biological brother for the first time ever and realized that my underlying problem was that I didn't know where I came from -- and that was transformative for me. I got out of prison in 2007 and didn't stop using until December 2009. I moved to Oakland partly to avoid triggers back in Denver. And in Oakland, I wanted to make social change, so I started volunteering for APEB, stocking the food pantry. Then I went back to school, got an associates degree in social service, and did an outpatient recovery program. And my life starting getting better, and I was able to take my meds consistently. That all led eventually to a full-time job at APEB. I've had no health issues since then, except a couple bad bouts with diarrhea that landed me in the hospital.
TM: What's a typical day like for you?
RB: I'll get up around 10, 11 a.m., watch TV, eat breakfast, get ready for work, which is 3 p.m. until midnight. Then I come home, watch TV and go to sleep. I work five days a week. I don't have family or many friends out here, so I get my social connection at work.
TM: How is the HIV situation in the Oakland area?
RB: I would say it's pretty bad, but I really can't answer. HIV is not at the forefront of my life at this time. But it does seem that since 2015 or 2016, the African-American gay population is starting to use crystal meth more.
TM: What are your goals?
RB: I would like to have someone in my life. And because I was adopted, I would like to adopt kids, but I think I might be too old for that, even though my trainees at work tell me I act young.
TM: What would you say to newly diagnosed folks?
RB: It's not a death sentence. It's gonna be OK. Just get and stay on your meds -- and if you're struggling with addiction, get help, because you won't be able to deal with your HIV until you're ready to deal with your addiction. I'd just say, Stay strong!