PrEP (pre-exposure prophylaxis, also known by its brand name Truvada) is a pill that, when taken daily, reduces the chance of getting HIV from sex by over 90 percent.
This makes it an extremely powerful HIV prevention tool, but not many young people are using it—only 11% of people currently taking PrEP are under age 25. Since this age group represents 1 in 5 new HIV diagnoses, it’s clear that something needs to change.
National Youth HIV & AIDS Awareness Day is April 10, and this year we want to talk about the particular barriers that young people face when they try to access PrEP. At the Mount Sinai Adolescent Health Center, where I work as our PrEP/PEP Health Educator, I talk to teens about HIV prevention and help them overcome these barriers every day.
It’s only after we understand these barriers that we can break them down and help all young people who want PrEP access it. Here are 5 of the biggest barriers to PrEP I’ve seen young people face.
1. PrEP? What’s that?
PrEP is a relatively new drug. Despite advertising and awareness campaigns, many people who would benefit from PrEP—and even many doctors who could prescribe it—still haven’t heard of it. Even when young people do see awareness campaigns, they may not see themselves represented. For example, transgender women—who are at disproportionately affected by HIV—may not see PrEP as for them if awareness campaigns mainly feature gay men.
Since PrEP is such a powerful HIV prevention tool, it would make sense that young people learn about it from their doctors. But this isn’t happening. Several young people have told me that when they asked their doctor about PrEP, their doctor didn’t know what they were talking about. Some doctors who are not familiar with PrEP refer their patients to other providers because they feel uncomfortable prescribing it. But PrEP is not specialized care, and forcing someone to make an additional doctor’s visit isn’t fair to young people (or anyone), and it can greatly reduce the chance that a patient will use it.
2. Who should “qualify” for PrEP?
Some providers who are less familiar with PrEP will decide that their patient’s HIV risk level isn’t high enough to warrant the prescription. But it’s not up to providers to decide this. The provider’s role is to give patients the info they need to make informed decisions—NOT to make the decision for them. Just because a patient is young doesn’t mean they’re not capable of making the best decision for themselves.
3. Stigma (and lots of it)
It’s no secret that HIV stigma is a huge public health issue—it negatively impacts the mental health of people living with HIV, discourages people from getting tested, and makes it harder for people living with HIV to stick with treatment. Stigma also keeps doctors and patients from talking about HIV prevention in the first place.
HIV stigma is intertwined with stigma surrounding sexuality. Many patients feel uncomfortable bringing up sex with their health care provider, particularly young people who usually don’t have as much experience talking frankly about sex. And few medical schools include detailed coverage of sexuality and LGBTQ+ health in their curricula, meaning many providers don’t receive the training they need to properly address these topics with their patients. Unfortunately, this means talking about sex can also be uncomfortable for many providers. This sends the message that sex isn’t a subject to be discussed in the doctor’s office—which couldn’t be further from the truth! For young patients to feel comfortable sharing this important information, providers need to ask open, non-judgmental questions about their patients’ sexual history.
For many sexual minority youth, talking about sex also means coming out to their health care provider. This can be especially hard for young people who may still be exploring their identity, and might be worried about their doctor outing them to their parents or caregivers. Providers can make young people feel more comfortable by signaling that they are LGBTQ+-friendly with signs, posters and inclusive intake forms, and by never making assumptions about a patient’s sexual orientation or gender identity, or when asking patients about their sexual behavior.
4. Prevention = Riskier Sex?
Some providers (and the public in general) get caught up in questioning whether PrEP will lead people to have “riskier” sex. But the research just doesn’t support this assumption. PrEP is just another HIV prevention tool, like condoms. It’s not my (or other providers’) role to restrict patients’ access to those tools. Instead, it’s our role to educate young people about the resources available to them and support them in making healthy decisions. This requires being non-judgmental about patients’ behavior.
5. “Will my parents find out?”
Most of the time, teens don’t want their parents or caregivers to find out that they take PrEP. Thankfully, in New York providers can prescribe PrEP to minors without parental consent. But this isn’t true in every state, and can be a significant barrier to access.
And even in New York, if a young person is on their parents’ insurance, the parent may see PrEP on insurance statements. There are several workarounds to avoid this. At the Mount Sinai Adolescent Health Center, we can make sure the insurance sends the statement to the young person’s dorm room or to the Center itself if they live with their parents. Figuring out the right solution for patients usually requires the provider to call the insurance company with their patient, and ask what they can do.
At the Mount Sinai Adolescent Health Center, we’re working hard to improve access to PrEP for young people. Anyone under 22 years old can make a free, confidential, judgment-free appointment with a medical provider. If they’re interested in PrEP, I talk them through next steps, set up appointment reminders and help them navigate their insurance coverage and sign up for co-pay assistance programs, which means that PrEP is often free.
Of course, not everyone lives near a major city or has access to health programs like ours. That’s why we need to keep talking about PrEP, stigma, and barriers to care—because young people’s access to crucial HIV prevention tools shouldn’t depend on where they live. If you’re interested in PrEP and live in the United States, you can use www.preplocator.org or www.pleaseprepme.org to find a provider near you.
Annie Ristuccia, MPH is the PrEP/PEP Health Educator and the Transgender Health Program Coordinator at the Mount Sinai Adolescent Health Center.