This Medication Prevents HIV. So Why Aren’t More People Taking It?

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Culture & Conversation Sexual Health

This Medication Prevents HIV. So Why Aren’t More People Taking It?

Cecille Joan Avila

On World AIDS Day, dispelling four common myths about PrEP.

As a health policy analyst, I’m not surprised when well-intentioned policies overlook the very people they are supposed to help.

Take pre-exposure prophylaxis (PrEP), for example. It’s a daily medication that lowers a person’s risk of contracting HIV. So why aren’t more people taking it?

PrEP medication has always been expensive, which means unequal access persists even with programs already in place to defray the cost. Ready, Set, PrEP is the latest program to address the high cost of the treatment. It launched in December 2019, and on first glance, it sounds like a great program. Part of an overall strategy to end the HIV epidemic by 2030, it’s a federal program that provides free PrEP to HIV-negative people who have a valid prescription but no insurance coverage. The program is intended to enroll 200,000 people and could dramatically increase PrEP adoption, especially because it makes free medication available through mail order and from nationwide pharmacies.

But addressing cost is not enough, as the scientific literature makes clear. Myths about PrEP limit the program’s effectiveness by reinforcing stigma around people who may benefit from the medication.

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For the program to succeed long-term, stigmatizing myths about PrEP need to be dispelled. Eliminating stigma is going to take time, but there are a few things to keep in mind along the way.

Myth 1: Everyone knows about PrEP

Some good news: PrEP awareness among men who have sex with men (MSM) increased from 60 percent to 90 percent between 2014 and 2017, and more young people now report being aware of PrEP.

The bad news: PrEP awareness remains significantly lower for Black and Hispanic MSM than for white. Absurdly, not all health-care providers are aware of PrEP—what it is or who it’s for—which means they won’t know to bring it up with their patients as an option, and they might not even be ready to prescribe it to someone seeking the medication. For all the progress in increasing individual awareness, it is an absolute failure if a patient advocates for themself only to be stymied by an uninformed provider. This is especially harmful for marginalized patients who often already face discrimination and bias in medical settings.

Ready, Set, PrEP’s rollout includes educational materials for both patients and providers that, at least superficially, appear diverse. But the program’s focus and clinical research needs to evolve over the next ten years to determine the nuances of reaching specific communities in culturally relevant ways. Without that, generic messaging could obscure any benefits of the program. We should take cues from other countries’ experiences with PrEP, which suggest tailored, supportive messaging is key in promoting adoption and adherence.

What can be done about it: For those who run into problems with their current provider, national databases such as PrEP Locator can help link them to more informed resources.

Myth 2: PrEP use leads to riskier sexual behavior

Even among PrEP users, there remains a stigma about the medication and those who use it, often manifesting as slut-shaming. PrEP only protects against HIV transmission, so proper condom use is still important to prevent other sexually transmitted infections. But while one Seattle study found sexual behaviors changed after PrEP adoption—including a decrease in condom use and an increase in bacterial STIs—other studies suggest PrEP does not change sexual behavior.

An increase in STIs could be a result of increased testing (a PrEP requirement), so don’t assume it means PrEP users are shifting to riskier sex. In fact, with STI rates rising in general, making a direct link between PrEP and riskier sex seems premature and potentially damaging.

What can be done about it: Regardless of PrEP adoption, regular STI testing and disclosing of results to would-be sex partners need to be normalized.

Myth 3: PrEP is just for people who are high risk

Only marketing PrEP to high-risk individuals feeds into sex- and HIV-related stigma and alienates those who might otherwise want or need it. Providers assess whether or not a person is high risk, but that doesn’t always align with the patient’s self-perception. Should someone’s sexual history matter if they are taking steps to protect themself in the future? Profiling patients based on known sexual history can increase feelings of shame that could discourage adoption or continuation of PrEP.

It should be easier, not harder, to enable people to make their own choices around safer sex. Reframing the PrEP narrative as something that grants people agency over their own sexual health is critical.

What can be done about it: Instead of offering PrEP only to clinically at-risk patients, providers can offer PrEP as part of a comprehensive sexual health plan focused on empowerment and prevention. Clinicians should encourage their patients to feel comfortable enough to have honest conversations instead of excluding ones—alienation helps no one in a doctor-patient relationship. And while PrEP tends to be marketed toward men who have sex with men, it’s equally important for trans women, cis women, and nonbinary people, as well as people who use drugs.

Myth 4: Health insurance solves everything

Ready, Set, PrEP covers uninsured people, and PrEP must be covered by insurance plans under the Affordable Care Act; that should make access a nonissue. After all, having health insurance is significantly associated with PrEP use, according to one study. But young people covered by a parent’s health insurance plan are actually less likely to use PrEP, citing concerns about confidentiality and disclosure and fears of being outed for sexual preference and for being sexually active by an explanation of benefits statement.

What can be done about it: Only 14 states have some protection for dependents that make sure patients—not policyholders—can be the direct recipients of their insurance statements. Until we can address sex- and HIV-related stigma, more states need to add similar protections, which will improve access to sexual health care for young adults concerned about confidentiality.

What’s next

Widespread adoption of PrEP could help end the HIV epidemic—but only if stigma is addressed. Individual interventions are only helpful if we can also change community perception. No one should feel shame for taking control of their sexual well-being.

To successfully reach 200,000 people a year, the approach must be more inclusive and considerate of intersectional factors. We need to include people of color, women, and people who use drugs in the conversation, so everyone who wants PrEP feels empowered to access and use it. PrEP should be free and available for everyone; for that to happen, stigma needs to go.