Before 2012, condoms were about the only effective way to protect against HIV. That was the year the FDA approved the first pre-exposure prophylaxis (PrEP ) drug to prevent HIV transmission.
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What Is PrEP?
PrEP is a type of medication therapy that stops the virus from making copies of itself in your body if you're exposed to HIV. When taken as prescribed, PrEP reduces the risk of HIV from sex by about 99% and through injected drug use by 74% or more.
Three forms of PrEP are available:
Cabotegravir (Apretude) is an injection for any person at risk of HIV exposure through sex. It's the most recent PrEP drug to be approved.
Emtricitabine and tenofovir alafenamide (Descovy) is a pill for people who were assigned male at birth and are at risk for HIV through sex.
Tenofovir disoproxil fumarate and emtricitabine (Truvada) is a pill that protects people who are at risk for HIV through sex or injected drug use. It was the first PrEP drug to be approved and is the most widely prescribed.
Different PrEP regimens are available for different situations. For long-term protection, you can choose between once-daily pills or injections taken once every 2 months. PrEP on demand is for protection just when you need it.
My Perceptions of PrEP as a Person of Color
When PrEP first came onto Al Washington's radar in 2015, he was curious but wanted to learn more. "I was in a long-term monogamous relationship and my partner and I at the time had talked about going condomless," says the 51-year-old Atlanta resident. "Coming from the AIDS era in the '80s and early '90s, I was all about protecting myself."
Washington says many of his friends in the Black community were skeptical about PrEP. "I talked about it with a couple of friends of mine, and they were like, 'Well I heard about it, but I don't know. I don't trust it,'" Washington says.
One reason for their mistrust was they felt PrEP had mainly been marketed to white gay men and not to them. That's not surprising since many of the commercials featured white couples.
Trust is just one of many barriers that prevent more Black, Hispanic/Latinx, and Asian Americans from taking PrEP. These are a few other reasons for racial and ethnic disparities in PrEP use:
Lack of knowledge.
Black and Hispanic men who have sex with men (MSM) are often less likely to know about PrEP than white MSM. Those who don't know much about PrEP may not realize they need it or may worry about its side effects.
PrEP awareness is especially low among women, even though they make up about 1 in 5 people diagnosed with HIV. Women of color make up the majority of American women who live with HIV. One reason women are in the dark is that some PrEP commercials clearly state the medication is not for people assigned female at birth, says McKinley-Beach.
Once people learn about PrEP and how it works, research finds they're more likely to take it.
Mistrust of the medical system.
"This country has given Black people many reasons not to trust the medical system," says McKinley-Beach. The 1932 Tuskegee Study, where researchers experimented on Black men with syphilis without their knowledge or consent, is just one of them. People who don't trust their doctors are less willing to use PrEP.
Stigma.
Forty years after researchers discovered HIV, stigma continues to surround it. Negative views about being gay and the belief that being sexually active is immoral stand in the way of PrEP use. Washington says his friends, even within the LGBTQ community, asked him, "Why do you want to take that? It's going to make you be more promiscuous." Some of his friends said they were uncomfortable discussing their sexual activity with a doctor.
Cost.
Most private insurers and Medicaid will cover the cost of PrEP. But many people who can benefit from these medicines, including Black and Latinx people, may be less likely to have health insurance. Because of this, they may think they can't afford PrEP. But programs are available that make these medicines affordable or free of charge. In general, most people who get PrEP should not have to pay for it.
Access to quality health care.
PrEP is a prescription medication. You need access to a doctor and pharmacy to get it. People of color are less likely to have a personal doctor than white Americans. Clinics that prescribe PrEP can be hard to find in Black and Hispanic/Latinx communities. Washington tells about a friend in rural South Carolina whose doctor challenged his reasons for taking PrEP. When the doctor finally did prescribe a PrEP medication, Washington's friend had to drive for an hour to find a pharmacy that would dispense it.
Racism and bias.
Racism exists both in the health care system as a whole and in individual doctors' offices. Some doctors have the mistaken idea that Black patients won't take their medication as prescribed or will have more unprotected sex if they take PrEP. "So they don't even approach the conversation about PrEP with people of color, and that is such an unfortunate missed opportunity," says McKinley-Beach. In one study of PrEP barriers, more than half of Black participants said they'd experienced racism and discrimination from their health care providers.
Cultural factors.
Perceptions about sexuality among certain cultures also stand in the way of PrEP use. Some Asian Americans say they don't seek out HIV prevention or treatment because they worry that they'll bring shame to their families.
Why I Decided to Take PrEP
Al Washington
Washington did some research about PrEP online, then visited a LGBTQ-friendly medical practice. "I expressed to them that I was interested in learning about PrEP. They were super knowledgeable. They gave me brochures and talked to me about it," he says. The staff told him what to expect and what side effects the drug might have.
It was enough to convince him. "I felt comfortable because I was talking to medical professionals as opposed to just [having] anecdotal conversations with people."
Not every medical practice and pharmacy around the country readily prescribes PrEP. But you can search online for PrEP and other HIV services near you at several sites, including:
- Locator.hiv.gov
- AIDSVu.org
- Preplocator.org
AIDS service organizations and local and state health departments can also be helpful.
My Experience With Side Effects
Aside from an upset stomach that lasted for a day or two, Washington didn't have any side effects when he started taking his first PrEP medication. After about 4 years on the drug he was taking, lab tests showed some possible kidney problems, so his doctor switched him to a different regimen.
How to Negotiate Costs
Brand-name PrEP is expensive, but most private insurance and state Medicaid plans will cover the cost. The Affordable Care Act requires almost all health insurance plans to provide the medication for free, which means they fully pay for all doctor visits and lab tests.
But what if you don't have insurance, or your copay is higher than you can afford? One option is to use a generic version of PrEP, which costs as little as $360 per year.
A few programs are also available to help you afford PrEP, including:
- Gilead Advancing Access
- Ready, Set, PrEP
- The Patient Advocate Foundation's Co-Pay Relief Program
Washington's pharmacy helped him sign up for the Gilead Advancing Access program. It paid for his out-of-pocket costs, making the drug free to him.
Advocating for PrEP in My Community
One way to bridge the trust gap in minority communities is to hear about PrEP from someone who looks like them, says McKinley-Beach. That's why, once Washington started taking it, he began talking about it with his friends. He told them he was doing well on it and that the side effects were minimal. He stressed the importance of protecting themselves.
Through those conversations, Washington convinced a few of his friends to see their doctors. "I think sharing my experience with people who know me and trust me made them more comfortable and confident going down that path for themselves," he says.
For anyone who's considering PrEP, Washington recommends starting with the right doctor. "Find a medical practice or primary care physician you can trust, who you can be completely honest with, and who is knowledgeable about PrEP, HIV, and everything going on in your community," he suggests.
My Life Now With PrEP
Though Washington's family doesn't know he takes PrEP, he's pretty sure they'd be on board with it. "I think they would be fine with knowing that I'm taking precautions and that I'm being safe," he says.
Washington also thinks going on PrEP strengthened his relationship with his then partner. "We were on that journey together," he says. "It probably brought us closer together."
Looking back, Washington says taking PrEP has been a game-changer for him. He's old enough to remember a time when getting HIV/AIDS was a death sentence. PrEP has "absolutely taken the fear of contracting HIV off the table for me. ... It's something I was not expecting to see in my lifetime."
Learn More About PrEP
The Pros and Cons of Different Kinds of PrEP
Where Race, Sexuality, and HIV Prevention Meet
Paying for PrEP