*We caught up with Raniyah Copeland, President and Chief Executive Officer of the Black AIDS Institute (BAI), to dish about what we can learn from the HIV/AIDs epidemic to help us properly address COVID-19.
BAI is the only Black think and do-tank in America working to end the HIV epidemic, led by, and focusing their efforts, on the Black community. Not only does BAI address the social determinants of health, it also digs deep into understanding how unlearning isms and phobias contribute to decreased health disparities and increased ability for health service providers and institutions to provide care.
Copeland shares insight into life for people with HIV/AIDs during the pandemic, as well as BAI’s launch of their “Black Voices Matter” video campaign with Tina Knowles Lawson. Check out our conversation below and learn effective ways for the community to support BAI’s efforts.
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On Jan 7, join @blackdoctor, Dr. Fauci, Dr Kizzy Corbett and other #BlackExperts for what Black Americans need to know about #COVID19 and #COVIDVaccine: https://t.co/7jR5XrDpUD https://t.co/KTFkrh4pBo
— Black AIDS Institute (@blackaids) January 6, 2021
You don’t hear a lot about HIV/AIDS and the impact on the Black community these days. Health officials don’t speak about it as much today like they did maybe 20, 30 years ago. What would you say has been the most vital advancements when it comes to HIV/AIDS over the last two decades, when it comes to education, treatment, prevention, outlook, outreach?
You’re right that there hasn’t been as much attention to HIV in Black communities recently. The interesting thing is it’s getting less attention, but the technology that we have, the advancements that we’ve made in HIV, have led us to a place where when we talk about HIV, we talk about ending HIV within our lifetime, which is a pretty extraordinary thing, that we have these amazing biomedical tools that theoretically could get us to the end of HIV.
We have amazing HIV testing technology. People can find out their HIV test results in less than a minute. You can go into a clinic or into an organization to get HIV tested. You can also do HIV testing at home and get your results in the privacy in your own home. It’s this amazing HIV testing technology.
We also have new medications like PrEP, which stands for pre-exposure prophylaxis, where people who are HIV-negative can take a pill every day, kind of like birth control, and they have an over 90% chance of not acquiring HIV, right, so people who are HIV-negative can stay negative.
We also have Treatment as Prevention, right, so people who are living with HIV. If they take HIV medication regularly, they stay in care with their doctor and are able to get the amount of virus, HIV virus in their body, to an undetectable level, that they can’t pass HIV to other people, then they’re able to live long and healthy lives. We call that Treatment as Prevention or U=U, Undetectable [inaudible 00:02:47].
We have developed the amazing science and research and advocacy that’s happened in HIV, but we still see these huge disparities around HIV. We have increased money to try and end HIV within our lifetime. We have new initiatives from the government to try and end HIV in the next 10 years, but that’s not going to happen if we don’t respond to the drivers of HIV in Black communities, and make sure the Black folks know about these amazing tools to end HIV. That’s what a lot of our work is right now.
It’s also interesting because so much of the COVID response is on the back of the HIV movement, HIV response. Just today, we see that Biden’s new head of CDC, Dr. Walensky, is a well-known leader, researcher in the HIV field. Dr. Fauci started his work within HIV. Then on the community side, Black AIDS Institute and other organizations, particularly HIV organizations, have been doing the work to talk about what are HIV vaccines, making sure that we’re sitting on community advisors for these clinical trials, ensuring that communities of color are represented.
Much of the work that HIV is doing today is going hand-in-hand with COVID. We can’t stop HIV unless we respond to COVID, and the way we respond to HIV really is the foundation of how we’re doing COVID response, from research to community.
@RaniyahCopeland of @blackaids: We know #HIV primarily affects the Black community. However very few HIV organizations are led by Black people, even fewer have Boards led by Black people & often have a paucity of Black people in senior leadership.#MedicalMistrust. @NMACCommunity pic.twitter.com/A3rZzlure3
— Ace Robinson (@akeliah) February 28, 2020
How are the HIV testing rates being impacted by COVID? Are we seeing a rise in HIV as people are getting COVID tested? ,
We aren’t seeing a whole lot right now. We are doing studies across the country really to see how COVID is being responded to, how COVID is impacting HIV, but we have some theories based off of how converging pandemics happen. We have seen something, right? We’re seeing a drop of people who are getting HIV testing.
We’ve been doing such a good job with making sure people know their status, particularly over the past 10 to 20 years. More people know their HIV status than ever, but still much of our HIV epidemic is driven by people who don’t know their HIV status, who pass HIV along to others. With COVID, we see a drop in HIV testing across the country. Many community-based organizations are closed. Telehealth is on the rise, which is a good thing, but that means that some of those in-person testing that happens is not happening anymore.
There are lots of studies and lots of efforts to try and combine COVID testing with all kinds of other testing that needs to happen, like HIV testing. We don’t see a whole lot of our COVID testing happening with HIV testing, but also testing blood pressure and checking what people’s blood sugar levels are because of diabetes. COVID really is impacting overall health in America, and because communities of color are disproportionately impacted by health, this means that the lack of health care services that people are utilizing because of COVID is affecting us more.
We’re seeing HIV death rates dropping, but the survival rate among women and people of color is not improving. Would you attribute this to low income areas just not having adequate healthcare resources?
That is definitely a part of it, but what we talk a lot about at Black AIDS Institute, especially now, is how you cannot end HIV unless you also respond to systemic racism. When we talk about HIV and people who are benefiting less from these amazing biomedical tools that have been developed, it’s Black communities, it’s poor Black communities. It’s Black people who are disproportionately experiencing intimate partner violence, right, particularly for women. It’s people who are homeless. It’s people who are using substances. It’s a lot of Black gay and bisexual men. It’s Black trans people.
It’s not because we are doing things differently, it’s because the systems of oppression really impact our daily lives, right? If you don’t have a place to live and are going from couch to couch or home to home, or looking for a place to live, HIV is not the top priority. If you are going in and out of prison and you don’t have money for food, HIV is not your top priority. Really, one of the ways we believe that we have to respond to HIV is by responding to and dismantling these systems that make the lives of Black people every day much more complicated.
It means that we have less. It means we have less resources and less really options to really center and prioritize our well-being and health. When we look at Black people, communities of color and women who are not benefiting as much, whether it’s death rates or utilization of these biomedical tools, it’s really about the life that we live every day and the hurdles that we have to jump every day, multiple times a day, just to live.
#DYK that Black Americans in the South make up more than half of new HIV diagnoses, but only 19% of the population? Read our interview with Raniyah Copeland to learn more about the Black Plan to End #HIV in America: https://t.co/8WSZABQH7J pic.twitter.com/JPiFityy9P
— AIDSVu (@AIDSVu) February 24, 2020
What has life been like for people living with HIV/AIDS during the pandemic, and how is the Black AIDS Institute aiding these individuals during this time?
I think that people who are living with HIV, particularly Black people who are affected by HIV, especially during this time we’re seeing lots of different things. We’re seeing loss of jobs and income, that the people who are being laid off look like us. If they’re not being laid off and considered essential workers, then that’s us. I think that employment is a really huge concern for us right now.
We also see these co-occurring pandemics. For many people who are living with HIV and affected by HIV, there’s HIV, but there’s also diabetes and heart disease and all of these other issues that we have to contend with. How do you manage all of these competing priorities, with really very limited resources to respond to them?
We also know that things like mental illness, substance use, incarceration and homelessness are real emergencies every day for people who are living with HIV and people who are affected by HIV. How are we making sure that we’re responding to this? One of the silent effects of COVID-19 really is mental illness and mental well-being, and so making sure that we’re focusing on what the client wants in each of those situations.
How do we empower individuals and community? How do we make sure that we’re inclusive and culturally relevant in all of these services is really important. We know that healthcare continues to really be important as well. At Black AIDS Institute, we do a lot of work in many of those fronts to try and ensure that Black folks are able to live long and healthy lives.
We do a huge amount of work with healthcare organizations, health departments, with community-based organizations, in making sure they know how to serve Black people well, that when Black people walk into clinical spaces, when they walk into their healthcare spaces, that it’s culturally affirming, that it’s free of bias and stigma. We do trainings and programs with these entities to really make sure they can serve us well. We also do a huge amount of policy and advocacy work.
With this incoming administration, there are huge opportunities to really advance healthcare in a way that we never have. How can we really demand? We’ve been talking to elected officials in the new administration. Let’s declare racism a public health crisis. We have a huge amount of data and studies that show this is true, right, that racism impacts public health profoundly. When we can name it a crisis, that means it also diverts resources to respond to racism, and really allows us to develop systems and structures that are anti-racist in practice and in policy. Those are things that are really important to us that we’re working for, that we hope to see advancement on in the first hundred days of this new administration, so that’s really exciting.
We’re also doing work here in Los Angeles where we’re headquartered. We’re a national organization, but we were founded out of Los Angeles. We provide around 3,000 HIV tests every year to Black Angelenos, particularly focused in South LA. We are doing now a combination of scheduling appointments for HIV testing, which was new for us. Before, people would just come in whenever to get tested, but now we’re scheduling appointments to really respond to COVID mitigation. We’re doing a lot of telehealth to link people to care services. We’re also doing support services. We have a weekly support group for Black gay and bisexual men here in Los Angeles. That’s our LA program.
Then we’re also nationally doing a huge amount of work with medical mistrust, really talking to the Black community about medical mistrust. This speaks to one of the issues with HIV vaccine, right? Black people have historically and consistently experienced medical racism within our systems. Because of the experiences of our grandparents and great-great-grandparents, and the experiences that we as Black folks experience every day in the healthcare system, and because of what we see around systemic racism, we know that we live in systems that are not meant for us, that actively harm us, but there is well-deserved mistrust of medical systems.
Then when you talk specifically about vaccines, you can see the social media memes. You can look at your group text chats, and we know that Black folks are not feeling this vaccine. How can we have conversations, making sure that we’re providing information to Black communities at large so that we can be informed about our decisions? We aren’t telling Black folks to take the vaccine. What we are saying is, “It’s important that you understand the science, it’s important that you understand the risks, and that you make an informed decision based off of science.” That’s really important to us.
45% of HIV diagnoses are among black Americans, and in the federal EHE states the share is even higher. #NBHAAD pic.twitter.com/BnuTZwaldI
— amfAR (@amfAR) February 7, 2020
The BAI launched the Black Voices Matter video campaign and you talked with Tina Knowles-Lawson. Do you view celebrities as a impactful way to reach the community?
Yeah, for sure. Especially now in the age of social media and how we get information, celebrities and influencers are critically important. In the early days of the HIV epidemic in the ’80s and the ’90s, Black celebrities were hugely important. We have data that shows the highest amount of media attention we got around HIV was when Magic Johnson came out about his HIV status. That kind of celebrity, that grandeur, and bringing people’s attention to how this really does impact people’s everyday lives.
With social media, we have these new opportunities to really take the message outside of Black folks who do HIV work. We’re looking at studies and talking to researchers and sitting on advisory boards, that what Black celebrities and influencers help us do is to get that message out, right, that you follow Miss Tina because she’s an amazing icon, she’s Beyonce’s mother, and she posts funny memes all the time. Now you can see her talking about HIV, and that’s something different in your mind.
Lastly, does the Black AIDS Institute have any initiatives, conferences/events coming up?
Yeah. I think I always recommend folks go to our website at www.blackaids.org, or just follow us on social media. Also we have our Black Treatment Advocates Network, BTAN. Those are chapters. They’re coalitions across the country. We currently have 16 chapters and 16 affiliates. They meet monthly. They do programming. That’s a great way for folks to get involved. If you want to go to a chapter meeting next month, that’s something that you can do.
Then we’re really gearing up for national Black HIV and AIDS Awareness Day, which is February 7th, where we hope we’ll have some new programming out and really try to use that as an opportunity to increase awareness around HIV. It’s my favorite month of the year, February, Black History Month, and so National Black HIV and AIDS Awareness Day is all about how HIV impacts Black community and increasing awareness around that.
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