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Q&A: Battling HIV PrEP stigma
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May has been full of newsworthy stories about pre-exposure prophylaxis, or PrEP, for HIV prevention.
First, Gilead Sciences announced that Truvada (emtricitabine/tenofovir disoproxil fumarate; FTC/TDF), a medication approved for the treatment and prevention of HIV, will come off patent a year early in the United States and will be available as a generic in 2020. This was followed by an announcement by HHS that Gilead will donate free PrEP for up to 200,000 uninsured people each year for up to 11 years.
FTC/TDF has been available in the U.S. since 2012, but uptake has been an issue. In 2016, study findings presented at ASM Microbe showed that PrEP uptake was slow among women, blacks, Hispanics and young people, and was the highest among males and whites. Another study presented in 2019 at CROI reported that PrEP uptake among high-risk men who have sex with men has increased nearly 30%.
Stigma remains a major barrier to HIV prevention and care. To combat the stigma surrounding PrEP use, Pennsylvania state Rep. Brian Sims, D-Philadelphia, the first openly gay man to be elected to the Pennsylvania legislature, recently shared a photo of himself holding an FTC/TDF pill on Instagram.
“Starting this day off smart, proactive, and in control!” Sims wrote in an accompanying message. “Think this is an invite to talk about my sex life? It’s not. Think it’s an invite to shame me or anyone else? Grow up. ‘Stigma’ is the thing our enemies want us to be stunted by. It literally kills us. It’s stupid and we control our own fate. No shame in this game. Just Pride.”
Infectious Disease News spoke with Sims about his post, the impact he hopes it will have and what can be done to combat the stigma that surrounds PrEP use. – by Marley Ghizzone
Were you hoping to set an example with your Instagram post?
I don’t know if I was hoping to set an example as much as try to model something for others. In sharing my post, I was hoping that people in my life, or anyone who saw it, would feel comfortable coming out and identifying as PrEP users. I want non-users to understand that there are a lot of people out there taking PrEP already, and I want even more people out there to just know more about PrEP. I don’t know if I necessarily was hoping that others would disclose [their PrEP use], although I do think that disclosure is really helpful in combating stigma.
What impact did you want it to have?
I think I was trying to reach out to a couple of different audiences. I have an audience of gay men who I know from my own personal interactions that many were using PrEP and very few were talking about it. I have an audience of straight allies that I think maybe didn’t exactly know what [post-exposure prophylaxis (PEP)] and PrEP were. Finally, I have an audience of constituents and other policymakers and I wanted them to see that there are proactive steps that I, as a policymaker, could take to help reduce stigma.
Is enough being done to promote PrEP use?
I don’t think so. I absolutely don’t. And I’m not looking for better marketing campaigns from Gilead. I’m looking for more responsiveness from the medical community. I still, unfortunately, come across doctors who don’t know enough about PEP and PrEP. Although there are certainly drugs on the market that aren’t lifesaving in the way these drugs are and I understand why a doctor may or may not know about them, this seems like it would be part of a rudimentary medical understanding. I want anybody who can or feels like they might need to go on PrEP to know all about it. But I think part of that starts with the medical community, and they don’t seem to be as proactive about this as I think that they should be.
Is enough being done to address the stigma surrounding PrEP?
I don’t think so. I’m hopeful that as more people learn about PrEP and as more people learn that others are on PrEP, that that stigma will fall away quickly but I don’t think that is something we are focusing on right now. Unfortunately, you find yourself having to educate people about PrEP at the same time you’re trying to combat stigma about it. This is a complicated thing to do. So, no, I don’t think enough is being done to combat the stigma and I think people need to be educated about the drug.
I have a lot of colleagues who will tell me that part of the reason they are not supportive of LGBTQ rights, for example, is that they might not fully understand the issues surrounding the trans or the intersex community. I always say to them, that shouldn’t hold you back from recognizing that this is a person, and that they deserve their rights. If a lack of understanding keeps you from voting, then what are you doing voting about pensions or the tax code if you don’t fully understand the issues? We vote every day on things, I’m sure, that my colleagues don’t fully understand and yet they are able to take active steps or active measures on. That’s what I’m hoping for as well.
What can legislators at the state or federal level do to increase PrEP use and decrease stigma?
The federal level is incredibly important right now, especially because the CDC is reviewing these contracts with Gilead, as members of the Senate are asking for these contracts to be reviewed. Gilead has made roughly $3 billion since 2012 on a drug that was largely developed using research from the CDC that we all payed for as taxpayers. Although I’m glad to see Gilead speeding up the time frame in which PrEP might be able to get to the market in a slightly cheaper, faster way, that’s just not enough. At the federal level, I’m hoping that members of Congress will continue to pressure Gilead, and anybody else who is operating in this sphere. When we are talking about lifesaving medications, already there should be an impetus to get them out to the market as readily available as possible. But when we’re talking about medications that were developed with taxpayers’ dollars, we shouldn’t even be having this conversation.
At the state level, there is a lot that can be done. I think I’m trying to lead by example there as well. I’ve introduced legislation to make sure PEP and PrEP are covered under our state’s insurance exchanges. This is something that every state legislator in any state legislature can do to make sure that those states that have people participating the insurance exchanges have access to PEP and PrEP at a rate that is reasonable for their insurance.
Disclosure: Sims reports no relevant financial disclosures.