About 60% of older Americans take a cholesterol-lowering statin to prevent heart attack, stroke, and other forms of cardiovascular disease. In contrast, only 25% of eligible, HIV-negative people take pre-exposure prophylaxis (PrEP), a safe, highly effective way to prevent HIV infection.
But recent changes in how health care providers should think about PrEP and who it is for have the potential to transform the HIV epidemic in the U.S. and possibly put it in the rearview mirror.
PrEP is an HIV prevention regimen for HIV-negative teens and adults that involves medication, and periodic blood and HIV tests to ensure health and safety. The Food and Drug Administration approved a daily oral PrEP pill in 2012, and just last month approved a long-acting injectable version that’s given every two months. Other PrEP delivery methods are on the horizon, and one day people will have a menu of HIV prevention options to suit them, just like birth control.
PrEP reduces the risk of HIV from sexual transmission by nearly 99%, and from injection drug use by at least 74%.
In December, the Centers for Disease Control and Prevention updated its clinical practice guidelines on PrEP. This major change offers the potential to give all people access to the medication.
The previous guidelines recommended that health care providers offer PrEP to their patients who were deemed to be at high risk for HIV infection due to their sexual behavior or injection drug use. So PrEP prescriptions went mainly to certain groups, like men who have sex with men, who accounted for 65% of all new HIV diagnoses in 2019. Injection drug use accounted for 7% of new cases.
But as a clinical psychologist and sexual health researcher, I know that people aren’t always comfortable disclosing to a health care provider the types of sex they are having, or who they are having sex with, or what kinds of drugs they use. I’ve also witnessed providers fail to ask their patients about sex, sexuality, and drug use when it is relevant, as well as providers who make incorrect assumptions about their patients’ behavior. For example, although one-quarter of new HIV cases are attributed to heterosexual contact, some patients and physicians assume that HIV doesn’t affect straight people much — if at all.
These factors, combined with high cost, limited insurance coverage, HIV-related stigma, and lack of access to information about PrEP have led to low uptake in groups that need it. Three years ago, I wrote about the incredibly low rates of PrEP use among teenagers — between 2018 and 2020, just 2% to 6% of sexually active LGBTQ adolescents in our studies had ever used PrEP, and pharmacy data showed that 1.5% of PrEP prescriptions in the U.S. between 2012 and 2017 were for adolescents under 18. My colleagues and I also noted how so much more could be done for HIV prevention in Black communities, particularly those living in the Southern U.S., where 51% of new HIV cases occur each year.
Not much has changed since then. Black people account for 42% of all new HIV cases, though they comprise only 12% of the U.S. population. Hispanic/Latinx people are the second most-affected racial/ethnic group, accounting for 29% of cases but 19% of Americans.
The new CDC guidelines have the potential to catalyze movement in these areas. They now acknowledge that many people can benefit from PrEP — not just those believed to be at high risk of HIV infection. The guidelines also recommend a far more inclusive approach to PrEP care. Specifically, they recommend that health care providers tell any adolescent or adult who is having sex about PrEP, and patients who request PrEP should be offered it even in the absence of specific risk behaviors. In other words, even if a health care provider isn’t sure why a patient is asking for PrEP because they don’t disclose risk factors for getting HIV, the provider should offer PrEP anyway.
This may also increase the uptake of PrEP: Because of the overwhelming and consistent evidence of PrEP’s benefits, in 2021 the federal government required Medicaid and many insurance companies and to cover the costs of PrEP — medication, lab tests, and clinic visits — with no out-of-pocket charges to patients.
These changes are a big deal. They have the potential to eliminate significant obstacles to one of the most potent and underused HIV prevention tools that exist. If these recommendations are successfully adopted, PrEP awareness and uptake should rise substantially in Black and Latinx women and men, teenagers, and transgender and nonbinary people. Stigma toward people using PrEP will decrease. The U.S. will inch ever closer to an HIV-free generation — a goal the country has prioritized with the Ending the HIV Epidemic initiative.
Of course, guidelines are just guidelines. For these recommendations to have teeth, policies and structures must be put in place that push providers to talk to patients about PrEP. These preventive pills must be made accessible, even for people who are uninsured and living in areas with less HIV prevention infrastructure. After people get on PrEP, they need support to stick with it so it is as effective as possible.
Beyond that, public health organizations must create large-scale awareness campaigns inclusive of all sexualities, genders, races, and ages. Such campaigns have the power to quickly make people realize that HIV prevention is relevant for them and their loved ones, that it is still an urgent public health issue, and that HIV does not just affect gay men, transgender women, and individuals who inject drugs. Effective social marketing campaigns can also motivate people to take steps toward healthier behaviors — like the PrEP4Love campaign, spearheaded by several of my colleagues.
My research team and I recently talked to LGBTQ teens about how to design better PrEP messaging for adolescents. When we asked them who PrEP is meant for, one message came through consistently loud and clear: PrEP is for everyone who has sex, and everyone deserves to know about it, regardless of who they are.
The kids were right. Until people are as aware of PrEP as they are of birth control, until every health care provider feels as comfortable prescribing PrEP as they do for any other preventive approach, and until people on PrEP get the support they need to stick to it, HIV will continue to spread. To make the idea of an HIV-free generation a reality, we don’t have a minute to lose.
Kathryn Macapagal is a clinical psychologist, associate professor in medical social sciences, and associate director of the THRIVE Center at the Institute for Sexual and Gender Minority Health and Wellbeing at Northwestern University in Chicago.
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