"What do you think is the biggest barrier to viral suppression?”
I scribbled this down on my clipboard. It was my fifth interview with care providers at AIDS Project East Bay (APEB), and the fifth time that stigma had come up as a major barrier to viral suppression for people living with HIV. At this point, I wasn’t surprised. One of my roles as an intern at APEB through the Elton John AIDS Foundation was to identify areas along the HIV Care Continuum that were particularly difficult for patients and providers at APEB to address. What I was beginning to understand was that viral suppression wasn’t just about testing and treating more people—it was about addressing the social and structural factors that made it difficult for people living with HIV to feel supported and able to access existing care systems. I learned that having thoughtful, culturally competent providers was just as important as providing patients with the newest medications, and that increasing HIV testing could not be done without addressing stigma in the community.
As I shifted my focus to working with youth, I realized that the same themes kept coming up. Reducing the risk of HIV among youth meant confronting the stigma associated with HIV and STIs, and breaking down stereotypes about LGBTQ and homeless youth. For adolescents to feel comfortable accessing care at APEB, we partnered with youth to create inclusive, safe spaces that we could then infuse with HIV education and resources. This approach—one that began with building community and then expanded to include HIV care and testing—was the key to many of APEB’s programs, and the key to effective outreach in East Oakland.
We have come a long way in our fight against HIV and HIV-related stigma, but my work with communities in East Oakland was a reminder of how much farther we still need to go. HIV may seem like a manageable condition for people with reliable health insurance, a loving support system, and an accepting, culturally competent healthcare provider, but for many residents of East Oakland, these are luxuries. In Oakland, racism, poverty, and discrimination make it difficult for APEB clients to fulfill even their most basic needs—food, housing, and freedom from oppression—and HIV care becomes an afterthought. And for the few who do manage to get into treatment programs, the threat of losing their housing or health insurance looms large, and the future is uncertain. The result is that Alameda County declared the epidemic of HIV and AIDS among African Americans a State of Emergency in 1998, and today, almost twenty years later, nearly 70% of persons living with HIV are people of color.
This World AIDS Day, let’s ask ourselves: who is most affected by HIV, and why? As a medical student, I learn that people who engage in “risky behaviors” are those most affected, and the way to eliminate HIV is to eliminate these risks. We get trained to dole out medications, educate patients about ways to reduce their risk of HIV, and test as many people as possible; and then we cross our fingers and hope that HIV goes away. But as a public health student and APEB intern this summer, I realized that those actions only take us part of the way towards eradicating AIDS. To truly eradicate HIV and AIDS, we must address stigma, racism, poverty, and discrimination, and understand each community’s unique relationship to HIV and healthcare. We must sit down with people and understand their fears and desires, and work with community leaders to design programs that bring individuals together, rather than treating them separately. And we must ensure that healthcare is not a fleeting luxury that could disappear at any moment, but that it is bound to and rooted in every community.
This isn’t an easy task, and it’s only going to get harder. Over the next four years, I fear that we may see a rise in homophobia, racism, and bigotry, and a fall in healthcare funding and resources available for marginalized communities. Under a Trump and Pence presidency, I worry about the security of APEB’s many federally funded programs, and I fear for the safety of APEB’s many LGBTQ, undocumented, and homeless clients. But I also have hope. Hope that some of the root causes of the HIV epidemic in East Oakland—racism, poverty, and homophobia—have now been made so visible that they are impossible to ignore. Hope that those who could once conveniently ignore American bigotry and oppression are now moved to join the fight. Hope that what may seem like a disaster for the country may actually help mobilize new allies.
This World AIDS Day, forget about AIDS. Forget about viral titers and testing and Truvada and CD4+ counts, and start thinking about basic human rights. Start thinking about how you’re going to ensure that everyone in your community has access to culturally competent and respectful healthcare. Plan for how you and the organizations you work with are going to ensure that people of all faiths, genders, sexual orientations, and socioeconomic statuses feel welcome and supported in this country. Be ready to fight for you and your neighbor’s right to healthcare, fair housing, and jobs free of discrimination. It will be these factors that determine the trajectory of the HIV epidemic in this country over the next four years.
This post was written by Walter Decker Point Scholar Tara Benesch.
Tara is a medical student in the University of California, San Francisco/University of California, Berkeley Joint Medical Program and Program in Medical Education for the Urban Underserved. Tara believes that creative, interdisciplinary partnerships are essential to solving major health care challenges. Read more about Tara here.