PrEP, a drug proven to prevent HIV, still slow to catch on

The Food and Drug Administration approved the use of PrEP, short for pre-exposure prophylaxis, as a strategy to prevent people from contracting HIV in 2012. Some were eager to take advantage of the potentially lifesaving drug regimen.

Others were skeptical, said Dr. Ken Ho, an infectious disease specialist with the University of Pittsburgh who was tasked with setting up some of Pittsburgh’s first clinics dedicated to providing PrEP.

Healthy people didn’t want to take a drug that could also be used to treat people with HIV. The clinics only saw two or three people per month in those early years.

“It just goes to show, you need buy-in in order to convince someone to do something,” Ho said. “I think there’s a lot of medical distrust.”

The drug has caught on in recent years as people learned more about it and saw others using it, Ho said. But Allegheny County is in line with national trends showing that some people — including people of color, those who are low-income and younger people — who could benefit from PrEP are not accessing it at the same rates as their white, wealthier counterparts.

Manufactured by the pharmaceutical company Gilead Sciences Inc., the combination drug — known by its brand name, Truvada — is used to treat HIV.

When used as PrEP, it is intended for use by people who are at risk of contracting HIV through sex or by injecting drugs. PrEP doesn’t replace condoms for stopping the spread of sexually transmitted infections other than HIV or preventing pregnancy; but when taken daily, PrEP reduces the risk of getting HIV through sex by 99%, according to the Centers for Disease Control and Prevention.

The drug reduces the risk of contracting the virus through intravenous drug use by at least 74%.

But despite its effectiveness, the drug is reaching far fewer people than could benefit from it.

Gilead has been widely criticized for marking up the price of Truvada, which costs about $1,300 out of pocket. The cost varies depending on the insurer but can add up with co-pays for lab work or office visits.

The company offers payment programs and low to no-cost options for people who are uninsured. Education about the drug — on the part of physicians and patients — could also play a role.

About 1.2 million people nationwide could benefit from taking PrEP, according to CDC data. Of that number, about 18%, or 219,700 people, received a prescription in 2018. That means about four in five people who could benefit from the drug weren’t prescribed it.

A separate CDC study released in September showed that in 2017, about a third of men who have sex with men reported using PrEP.

While rates of PrEP use among that group are up, black and Hispanic men use the drug and discuss it with their doctors at lower rates than their white counterparts, according to the report.

Those findings persisted among men of color who are covered by health insurance.

“We have lots of gay, white, insured, professional men on PrEP, which is great, because some of them have HIV risk, too,” Ho said of PrEP use in Allegheny County. “But we know that there are groups who are at risk for HIV, who are not necessarily accessing PrEP. For example, young, black, Latino, gay men are a group where we know, domestically, their HIV rates are stable or increasing — but I think, as a group, having trouble accessing PrEP.”

Young, black men in Allegheny County contracted HIV at a higher rate than their white counterparts in 2017, according to data provided by the Allegheny County Health Department.

Of the 20 new HIV infections among women reported to the county health department that year, 14 cases were in black women.

Pennsylvania Secretary of Health Rachel Levine put out a call to action in April, noting that people ages 13 to 24 statewide account for a quarter of new HIV diagnoses in Pennsylvania. Of that group, half have never been tested for HIV.

Organizations like Pittsburgh-based Project Silk are working to close those gaps in education about HIV and access to resources for testing and PrEP.

The organization is focused on providing a safe, social space for LGBTQ youth of color under 29, said Ho, who also works as Project Silk’s medical director. While there, young people can also access medical care and information about HIV testing and PrEP.

“Our youth tend not to come in for visits, they tend to take their medications less frequently,” Ho said. “We just have a hard time interfacing with them, and this is a way of bringing these services to people in a space where they will feel comfortable, and that they will trust as well — because, like I said, I think medical mistrust plays an even more prominent role when it comes to youth.”

Others are working to make sure information about sexual health is reaching young people where they already are — in schools.

State Rep. Brian Sims, D-Philadelphia, introduced a bill in June to require comprehensive health and sex education in Pennsylvania.

Sex ed curricula vary widely throughout the state, and the information and access to resources young people have are often dependent on where they live, Sims said.

His bill leaves specifics up to experts in the state Department of Education and Department of Health, but does require the curriculum to teach students about HIV testing and prevention, as well as drugs like PrEP.

“I just know that situations get better with more information, not worse,” Sims said.

Physicians also need to be included in education around prescribing and using PrEP, said Dr. Linda Frank, a professor in the University of Pittsburgh Graduate School of Public Health department of infectious diseases and microbiology, and director of the MidAtlantic AIDS Education and Training Center.

That goes beyond making sure their patients take a pill a day, she said. It includes working with communities to make sure people have the support and counseling to make healthy decisions.

“One of the real issues continues to be, how do you get people to change their behavior?” Frank said. “It’s important to have treatments and vaccines, but we still have to work on that other side of the equation: How do you get people to change their sexual behavior? How do you get people to change their drug using behavior?”