The Invisible Divide: Dr. Hyman Scott On Confronting Racial Inequalities in PrEP Use

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Dr. Hyman Scott (Image courtesy of subject)

A nationally-known HIV researcher and practicing clinician, Dr. Hyman Scott believes that PrEP, the once-daily drug that can prevent transmission of the potentially deadly virus, has become arguably the most important weapon in the anti-HIV arsenal.

Data from the Centers for Disease Control and Prevention bears it out. It reports that the PrEP usage rate has climbed from 3% shortly after the drug hit the market to 25% in 2020, and new HIV infections nationwide fell by 8% from 2015 to 2019.

But Scott sees a dark cloud around PrEP’s silver lining: Not enough Black people are taking the drug, even though HIV infection rates in the community are stubbornly, disproportionately high compared to whites -- and trending upward.

Black people were just 14% of overall PrEP users, but 42% of new HIV diagnoses in 2021, according to AIDSVu. By contrast, the website reports, whites made up 64% of PrEP users and 26% of new HIV diagnoses.

Scott says blame lies mostly with the usual health-disparity suspects: poverty, lack of healthcare access, medical insurance red tape. But Scott says the key to bridging those “tremendous” disparities is by talking openly with the Black community about PrEP and encouraging everyone to take it -- even if they (or their care providers) don't believe they are at risk for HIV infection.

“We really need to -- and I think the CDC guidelines now embrace this -- talk about PrEP to everyone, and offer it to anyone who wants it,” Scott, a Yale-trained physician and accomplished equestrian, said in a wide-ranging interview with The Reckoning. Placing PrEP in the same category as condoms and birth control helps reduce stigma and eliminate racial barriers to access. It also helps address the long-debunked misconception that HIV only affects white gay men.

Our conversation with Scott, clinical research medical director at Bridge HIV in the San Francisco Department of Public Health and an assistant professor at the University of California, San Francisco, was edited for length and clarity.

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Dr. Hyman Scott (Image courtesy of subject)

The Reckoning: For most of PrEP’s existence as a drug, it has been marketed to gay men, and data indicate that most of the people who use it are white men -- their usage rate is more than 80%. You talk about the need to increase uptake among Black people. Why offer it to everyone at the same time?

Dr. Hyman Scott: There are key populations in the United States where we have HIV infections. If we're talking about sexual health, in general, we're talking about condoms and those kinds of things, right? We don't restrict (condoms) just to one population. We talk about condoms as an HIV prevention tool that anyone can use.

We did this with HIV testing as well. (When AIDS emerged), we had this focus on who we should be testing and what we should be testing for. But then we had these more broad campaigns -- that everyone should have an HIV test at least once in their life, and then more frequently than that.

It's not that we shouldn't continue to encourage and focus our efforts in places where we have the highest rates of HIV, but it shouldn't be at the exclusion of other individuals. We just need to be more universal. We want to make sure we cover individuals and give people the information to make decisions about their sexual health and make sure that they're aware that PrEP is perhaps something that they could use.

The Reckoning: That makes sense -- especially when considering that, after a few decades hovering around 20 percent, we’ve seen a slight uptick in heterosexual HIV transmission, and a slightly sharper rise among Black heterosexual women. Do you believe universal PrEP access could stop this trend?

Dr. Scott: We don't know for individuals, particularly for heterosexual women, what are the risk factors for acquiring HIV. And then the same for heterosexual men: Heterosexual transmissions do happen in the United States. They're not at the same level as in other parts of the world, but they do happen. But most of the people who are what we would externally say is low-risk for HIV don't view it that way.

I think in places like (Washington, D.C.), and places like Atlanta, and places like Birmingham, Alabama we do have these very high rates among Black men who report sex with men, but also may report sex with women or people of other genders. And so how do you make (PrEP) relevant for individuals who don't identify with (gay men), the key population that is in focus of practice?

A lot of people didn't think that [PrEP] was appropriate for them because they didn't consider themselves at high risk. But I think once you start down that road, it's hard to shift directions.

The Reckoning: How does that paradigm change? What must happen?

Dr. Scott: What we really do need to do is to just make PrEP more universal and offer it to everyone to destigmatize this idea that you have to be at high risk for HIV. There are individuals whose risk for acquiring HIV is from their community and network and not from necessarily their individual behavior. And the “risk language” (around PrEP) doesn't account for that, particularly in communities that are black and brown where we have a high rate of HIV and lower access to healthcare with antiretroviral treatment to help people stay undetectable.

We have access issues to work on as well. But if people don't know about it, they're not going to (request) it.

“What we really do need to do is to just make PrEP more universal and offer it to everyone to destigmatize this idea that you have to be at high risk for HIV.”

— Dr. Hyman Scott

The Reckoning: Talk more about that: What are some of the access barriers you see?

Dr. Scott: The interesting data shows that there are these prep deserts, where you can't find a prep provider within a three-mile radius of where you live. I think it reflects that not all primary care providers, one, are aware of prep, two, are comfortable with prep, and three, are willing to prescribe PrEP.

And so even if someone has access to care, it doesn't necessarily mean that they're going to have access to PrEP. A lot of efforts are happening to help primary care providers, but I think a very salient example of exactly how this follows is contraception.

The Reckoning: You’re seeing parallels between PrEP access and the political fights over contraception? How are the issues similar?

Dr. Scott: This is sexual health, (which) revolves around protection from either pregnancy or HIV prevention. And it's not always easy for individuals to access contraception, even from their primary care provider, which is why Planned Parenthood has clinical sites that are distributed around the community, and women's health centers support those needs, because there's a gap. And I think that there is a gap for PrEP as well that is being filled by a lot of community-based organizations.

There's currently a challenge to insurers covering PrEP through the Affordable Care Act. It's a similar type of fight that has been going on for contraception. And I think that in the Affordable Care Act, PrEP has to be covered without cost, without cost sharing by private insurances.

There is no magic bullet, unfortunately. This is a multilevel challenge that requires a multilevel effort to try to remove (barriers). But it is also making sure that providers are aware of this -- that providers feel comfortable prescribing PrEP as an anti-retroviral.

It's been more than 20 years since oral PrEP was approved for HIV prevention. And we're still struggling to figure out how to implement it. I think that we still are having a fight over contraception -- it's been going on for decades. And so I don't think that's going to be a decent answer. But I do think that loud voices making important commentary on how we can do this better will be important.

The Reckoning: What about injectable PrEP? Could a routine shot have greater impact -- increased usage rates -- than taking a pill?

Dr. Scott: I think injectable PrEP is a new option that is highly effective in clinical trials and is superior to oral PrEP. But it is also logistically more challenging to implement, because it requires a different type of visit, it requires more visits that are in person. And it's not always covered completely by insurance. So there's a lot of insurance hurdles. So it's been very difficult for people to access it. Even in places like our clinic, where we have 3,000 people on oral prep, it is exceedingly hard for us to get people on injectable prep. Our staff know how to do it. But it takes a couple of days or less to get someone on oral PrEP and it takes three to four weeks to get through all of the (insurance) hurdles.

“This is a multilevel challenge that requires a multilevel effort to try to remove (barriers). But it is also making sure that providers are aware of this - that providers feel comfortable prescribing PrEP as an anti-retroviral.”

- Dr. Hyman Scott

The Reckoning: If that’s the case, why is it considered an important breakthrough?

Dr. Scott: So we know that in contraception, when you increase the number of choices, you increase the overall uptake. And so we really need that for PrEP, where you can give people options. We do surveys with individuals around oral, or in the setting of oral prep, you know, one of the biggest reasons why someone didn't want to take it is because they didn't want to take a pill. Now, it could be about still taking one, but it could be about (the stigma of) having the pills around -- if you live with someone, whether roommates or partners, having those children around.

The Reckoning: It sounds like there are just as many cultural barriers as there are bureaucratic ones.

Dr. Scott: The stigma for HIV is still very much around, and that hasn't really changed in like, 20 years.

That's surprising to me. I mean, as much as we have advanced in some ways, that it's still stigmatized -- it's kind of mind blowing. Stigma is a powerful weapon. I think that it's reinforced in many of the settings in which it arises.

So, you know, I talk to my Uber and Lyft drivers all the time when I'm going somewhere. A Lyft driver asked me about some of the basic things -- ‘Can HIV be spread by kissing?’ So I think those of us who are in the work are so used to having conversations that we feel have already been had in the past and don't need to be had.

But I think we lose sight of the individual -- that there's a whole lot of people who aren't there yet. We have to remember that, because I think that that is something that drives the stigma. I was like, ‘No one's ever talked to you before,’ and he never had that conversation or had never been with someone who's willing to have that conversation. So I think that that's something else that we can't lose sight of.

It's humbling, but it also explains a lot.