Although the human immunodeficiency virus (HIV) has been in the United States since at least the mid to late 1970s, studies show that the virus may have existed in humans since the 1800s. However, the first cases of what became known as acquired immunodeficiency syndrome (AIDS) were documented in previously healthy gay men in Los Angeles and then New York between 1980 and 1981. While initial reports made it seem that the virus only affected gay men, it soon became apparent that wasn’t the case. It could be transmitted sexually, through injected drug use, from pregnant women to their babies and through donated blood.
Although treatment has changed and has become more effective at controlling HIV so that it doesn’t develop into AIDS, the Black community is disproportionately affected compared with other races and ethnicities. In fact, according to the Centers for Disease Control and Prevention, in 2019, Black/African American people made up 13% of the US population, but 42% (15,305) of the 36,801 new HIV diagnoses. With all the advances, HIV, as with many other illnesses, the Black community continues to bear the brunt of the burden.
BET.com: Despite all the progress made in reducing cases of HIV, it seems surprising that Black Americans are still disproportionately affected by the virus? Can you help us better understand what that looks like in the community?
Grazell R. Howard: At the top of the heap in terms of the populations that are Black, it’s young men who have sex with men with the highest number. Second to that would be transgender women. And then Black heterosexual women.
BET.com: Why are Black women more susceptible than others (in 2019, white heterosexual women accounted for 954 newly diagnosed cases, Black heterosexual men 1646, and Black heterosexual women 3473)?
Howard: At Black AIDS Institute, we are radically partnering and shifting how we engage and inform the community. So, though it's about education, it's also the messaging. The conversations have almost become like mantras rather than informative. We talk about lived experience and MSM (men who have sex with men), and access to healthcare. But it needs to be access to quality and culturally competent health care within black communities. We're not a monolith.
Here's the lens to consider, of that 42% that we know is the largest proportion of HIV: the most vulnerable of us are the lion's share of that number. So, while I have segmented it out to men who have sex with men, transgender women, and heterosexual women as I just did for the sake of our foundation of the problem, ultimately, federal funding is how we stratify the virus not how we live in the community.
BET.com: What do you mean by "how we stratify the virus?"
Grazell R. Howard: The current funding (for HIV) is almost exclusively focused on young Black men. But there is a cohort of Black women, who are still engaged in IV drug use, don't know PEP (post-exposure prophylaxis) versus PrEP (pre-exposure prophylaxis) even with commercials on TV, and don't believe that a condom is a way to save their lives. We don't even talk about condoms, and based on a woman's anatomy, it's much easier for us to contract HIV.
However, we also know that if a Black woman is HIV negative and starts a PrEP protocol, her body doesn't respond the same way to the meds as a young Black man's body. If a man takes PrEP, he has uptake in a week to two weeks, and sometimes it takes much longer to show up in a Black woman's system. (Typically it takes 20 days to reach protective levels in vaginal tissues and seven days for receptive anal sex.)
PrEP, wasn't marketed to us. So I don't want to label this as being about sex. The virus has been stratified in such a way that when Descovy (pre-exposure prophylaxis anti-viral) came out, the FDA didn't say it was for women.
BET.com: How do we get the education to the Black community so that it is understood and relatable?
Grazell R. Howard: The education, the message, and the packaging has not been directed to us for us. I guess my radical theory and partnering is to ask, 'How dare you think in the Black community you're going to educate the MSM about something if his mom, auntie, or big momma doesn't know about it? In our community, Black women drive education.
We have all the tools, but it's the cultural context that we've left out of it. I'm in this sector of HIV, and what drives this sector is Black gay men. From the beginning of this virus, subsidies were given to men.
Furthermore, people need to understand what high-risk behavior means: it's having multiple partners; it's anal intercourse, it's not knowing the status of your partner; it's not practicing safe sex every time and it's IV drug use.
However, I also want to emphasize that most people don't know their status. So by the time they find out they're HIV positive, they could be in an almost full-blown state like stage three HIV. So within our community, we have the highest numbers of new diagnoses and of people who don't know their status.
BET.com: Why is there a disconnect with getting tested?
Howard: Those most likely at highest risk are the same individuals with challenges around social vulnerabilities like housing, food apartheid, trauma, and insecurity.
Still, we have done good work, and there are biomedical advancements and prevention tools that have led to a decline. However, we still make up more than 40% of HIV cases. It's not the tools, but the methodology, the penetration in the community, and how the information is packaged.
It's also about stigma; while universal, it is also deep in the Black community. We don't want to have those conversations but having them is the only way to suppress the virus. Faith-based organizations want to walk the tight line. There are great preachers who want to talk about it and others who won't bring it up.
We have not taught our community in a way that they can understand. We now have to make messages that people can receive and take, like vitamins. We got the wrong message first in our community like we're the most sexual and hypersexual when we're actually most conservative. We have to unlearn all that.
We have medical mistrust in our community. It's hard to convince people to take PrEP. But you don't have to get HIV, and if you do, you're attached to a system that's not dedicated to your best outcomes, so you need to stay well.
You need to know the status of your partner. And use condoms and for the people who are uncomfortable negotiating the use of condoms or are in vulnerable situations those are the ones that we want to find and teach about PrEP.
Editor’s note: This article has been edited and condensed for clarity.