Raniyah Copeland is the President and Chief Executive Officer of the Black AIDS Institute (BAI) and an AIDSVu Advisory Committee member.
Q: The Black AIDS Institute recently developed We the People: A Plan to End HIV in America. What are the goals of this plan?
The goal of the We the People plan is to succinctly and clearly lay out how we can end HIV in America. In the last few years, there have been significant efforts to end the national HIV epidemic, especially since the announcement of the federal government’s Ending the HIV Epidemic: A Plan for America initiative. We now have the necessary tools and biomedical advances, including antiretroviral therapy and pre-exposure prophylaxis (PrEP), to theoretically end the HIV epidemic. However, despite these advances, we are still seeing racial disparities in HIV prevention and treatment.
With this renewed focus on ending the epidemic, we want to make it clear that we are never going to reach these goals until we recognize and respond to the systems and structural barriers that are currently fueling this epidemic. What is really driving HIV in the U.S. are the underlying systems and the structural anti-Black racism that is a part of our country. We believe that if these systems remain in place that Black communities will continue to be left behind. Our We the People plan aims to clarify what really needs to happen to end HIV and illustrates this in four pillars:
- Dismantle anti-Black practices, systems, and institutions that endanger the health and well-being of Black people and undermine effective responses.
- Invest in Black communities through resources and services that speak to the wholeness of Black communities and mitigate the social and structural factors that worsen health outcomes.
- Focus on insurance. We need to ensure universal access to high-quality, comprehensive, affordable, and gender-affirming healthcare services for Black people.
- Build the capacity and motivation of Black communities to be change agents for ending HIV.
This plan is about making sure we have the social and structural tools in place so that these amazing biomedical interventions are available to the communities that are most impacted by HIV.
Q: BAI’s report explores the enduring legacy of anti-Black racism, which has resulted in the persistent disenfranchisement of Black Americans. How does racism contribute to the disproportionate impact of the HIV epidemic on Black communities?
Anti-Black racism has been woven into the fabric of American society, beginning even before slavery. The disproportionate impact HIV has on Black Americans is a manifestation of the health inequities that are a result of these racist structural barriers. Additionally, this has manifested as medical mistrust within the Black community. Many Black people do not engage in healthcare services because of a legacy of medical mistrust, which is often hallmarked by the Tuskegee Study. This is really both about the experiences that our grandparents, great grandparents, and so many before us had and the experiences that we’ve had as individuals in healthcare systems today. We see clinicians not believing our symptoms, insisting our pain isn’t real and thinking we can physically endure more. This mistrust of the American healthcare system is ultimately an outcome of a system built upon racism.
Additionally, the environment that we live in plays a huge role. For example, we know that poverty is an important indicator and is a driving factor of new HIV infections. Almost 10 years ago Centers for Disease Control and Prevention (CDC) released a study that found that poverty is the strongest indicator of HIV burden in a community. When you look at impoverished communities you can see a direct correlation that can be traced back for many families to slavery, showing that poverty has been institutionalized in Black families since the end of American Reconstruction. Poverty is a great illustrator that shows how institutionalized racism can permeate every aspect of one’s life.
Additionally, you can look at mass incarceration and see how Black people and families are disproportionately impacted by the criminal justice system much more than individuals of other races/ethnicities. This is not because Black people break the law more than other folks but instead, it is about these unjust systems that have lasted multiple generations. We know mass incarceration impacts rates of HIV in a community. I think that people are just now starting to understand how this is connected to racism.
When we think about racism, at least here at the Black AIDS Institute, we always tie in the homophobia and transphobia that comes with it. When we don’t have structures that are equitable it only further exacerbates the diseases that plague our community. The Black AIDS Institute is hoping that this plan is seen as a very explicit call to action. When people outline how to allocate resources or distribute funding without including specific actions towards the pillars we outlined in our We the People plan, then they aren’t taking the steps that can actually end HIV for everybody.
Q: The use of pre-exposure antiretroviral prophylaxis (PrEP) has increased significantly over the last several years, however important disparities in PrEP use exist. BAI’s report cites a CDC analysis that shows only 5.9% of Black people who had indications for PrEP in 2017 were receiving it, compared to 42.1% of White people. What are the structural barriers that drive this disparity and how can they be addressed?
I think medical distrust is one of the biggest barriers when it comes to PrEP utilization within Black communities. I cannot tell you the amount of time I’ve gone into Black communities to talk to people about PrEP and either they don’t know about it or they think that’s only something for white people. So many Black communities have intrinsically tied beliefs that the government is out to get us. HIV and the biomedical tools that can end HIV are deeply affected by this common belief.
There are challenges beyond medical mistrust, like the lack of knowledge about available HIV services. When we talked to Black women about PrEP, they were either unaware of it or thought it was only for gay men. The vast majority of promotional material and messaging for PrEP has been specifically targeted at gay men. Although this is a key group that must be prioritized, you can’t leave out other pillars in the Black community that shapes our norms and community values. This is why BAI has done a lot of programming around Black women and HIV. For example, we have started implementing campaigns in states like Louisiana and Florida specifically marketed towards Black women. When we’re talking about changing cultural norms, it can’t just be for Young Black Gay Men or Black Trans Women – it must be for the whole community.
Once we connect Black people who would benefit from PrEP to it, you have to retain us on PrEP for an appropriate amount of time. Too often we see people who begin taking PrEP only to stop and shortly after be diagnosed with HIV. That is such a heartbreaking experience. We miss the critical opportunity when this happens. Many of us who do this work are trying to understand why this happens and why someone may stop taking this medication when it’s a good indication for them to continue. So often we hear it’s about the experience they have within the healthcare system, loss in housing or income, incarceration or other issues that disproportionately impact Black people.
Q: The Black AIDS Institute’s motto is Our People, Our Problem, Our Solution. Can you tell us more about your organization’s role in the Black community and in the fight against HIV/AIDS?
With such an important issue, we prioritize our work into efforts that move the needle for Black people. One priority is making sure that Black people know about the tools to end HIV, especially PrEP or other preventative medications. To increase awareness, we engage Black influencers, participate in Black events, and engage Black cultural icons so that we can try to normalize conversations around HIV. We also prioritize ensuring that organizations know how to serve Black people well. Once we get Black people to know about these HIV biomedical tools, we have to make sure the places they seek these services from know-how to provide high-quality services, culturally relevant services to Black people and make sure clinician offices are free from stigma.
From the beginning, the Black AIDS Institute’s mission has been to end the HIV epidemic. Ultimately, this is about increasing awareness within the larger Black population and changing our cultural norms. We started in 1999 and were able to work with major Black civil rights organizations like The Urban League, the NAACP, and The National Newspaper Association and others to develop their first action plan to end HIV. Today, we continue to try and move Black leaders and institutions to confront HIV from an intersectional lens. Additionally, we now provide HIV services here in Los Angeles in collaboration with St John’s Well Family Child, which is one of the largest community health clinics of South Los Angeles, where we are headquartered. In Los Angeles, there is a huge HIV epidemic and our framework for fighting it has turned more towards a biomedical framework. We thought it was important that we understand what it meant to provide HIV services here in Los Angeles, so five years ago we started providing those services. Last year, we conducted over 2,000 HIV tests and provided PrEP for over 500 people. This year we’re looking to double these numbers. Our local programming has spurred our strategies to respond to HIV nationally.
Q: February 7 is National Black HIV AIDS Awareness Day and this year’s theme is “We’re in This Together.” What is your message to Black Americans on this day?
One of my favorite quotes is, “if they come for me in the morning, they will come for you in the night,” and to me, this means that our health and happiness are inextricably linked to each other. If we want to be happy, healthy, and to thrive as individuals, we must make sure that the entire Black community is as well. I can’t think of too many other diseases besides HIV that have shaped and impacted our community so much. When I talk to people across the country, I regularly get stories about how much they are impacted by HIV, whether it’s them or a family member. I think it’s an extraordinary time to do this work because we are beginning to see the finishing line: a day where there is no more HIV. But to do that we must get to the root of what is driving this epidemic. Only together can we guarantee the well-being of ourselves and the well-being of our community members. To end this epidemic, we must work together so we all benefit together.