Here's why most at-risk populations don't use HIV prevention drugs

It’s been over a decade since the Food and Drug Administration first approved a medication to prevent HIV.

But the Centers for Disease Control and Prevention estimates just 30% of the 1.2 million Americans who could benefit from pre-exposure prophylaxis, known as PrEP, were prescribed the drug in 2021.

Even though the number of people on the medication has increased every year, advocates and academics say it’s critical to cut through barriers that prevent people from getting PrEP. That is particularly true for Black and Latino people who are less likely to take the drug but are at higher risk for infection.

Dr. Patrick Sullivan, a professor of epidemiology at Emory University, said public health must address disparities in PrEP use to meaningfully reduce HIV transmission. The U.S. Department of Health and Human Services set a goal to drive down HIV infections 90% by 2030.

“We have to be sober about the disparities that we already have in the HIV epidemic in the United States,” Sullivan said. “We're at a real time of opportunity. And we're at a time when attention to issue of equities is required to make sure that we're really moving in the right direction.”

More: New HIV infections are down – thanks to young people. But many aren't getting critical drugs.

What are PrEP drugs?

PrEP is an antiretroviral medication proven to reduce HIV infections from sex by as much as 99%. It is sold as a daily pill under brand names Truvada and Descovy, as well as generic versions.

In 2021, the FDA approved Apretude, an injectable taken every two months after two initial shots taken one month a part.

Most can get HIV prevention medication for free or reduced cost

All three versions have received "A" ratings from the U.S. Preventive Services Task Force, an independent advisory panel of national experts that evaluates medical treatments and services. Under the Affordable Care Act, that means insurers must cover the full costs of the medication as preventive care.

When Truvada became the first HIV prevention drug approved in 2012, its annual cost and lack of insurance coverage made it unaffordable for many. But consumers now often get PrEP for free or at a reduced cost through manufacturer coupons, insurance, community clinics or federal government's free HIV prevention medication program.

However, activists say insurers have been slow to cover bills from required lab tests and medical visits. People must test negative for HIV before starting the medication. While on the treatments, they must take routine tests for HIV, other sexually transmitted infections and kidney health.

Carl Schmid is the executive director of the HIV+Hepatitis Policy Institute, which has pressed health insurers to cover the costs of lab testing and medical visits that people need to get and stay on the medication. But he said those costs also can be a barrier to care for those who are uninsured and can't afford such services.

"They can get the drug for free – that's not a question," said Schmid. "It's the labs. You have to have a doctor's visit to get a prescription. And those things aren't free."

Black, Latino communities are less likely to use PrEP

White patients are far more likely to take PrEP than their Black or Latino counterparts, even though white patients are less likely to get infected with HIV.

AIDSVu, a collaboration of Emory University and Gilead, reports annual trends in PrEP use and HIV infections. According to its most recent data showing 2021 PrEP use and 2020 HIV infections:

  • Black people represented 14% of PrEP users but 42% of new HIV diagnoses.

  • LatinX people are 17% of PrEP users but account for 27% of new HIV diagnoses.

  • White people make up 65% of PrEP users and 26% of HIV diagnoses.

These disparities are fueled by a mix of policy decisions, economic and cultural factors and stigma, Sullivan said.

In rural areas, people might not want to visit a clinic where friends or relatives work. Or people might be reluctant to discuss their sexual histories for fear of being judged, he added.

"Some of the things that start a PrEP discussion can be stigmatizing," Sullivan said. Patients "anticipate stigma if they go in and say, 'I have male sex partners, or I have multiple female sex partners,'" or a sexually-transmitted infection.

Southern states such as Mississippi, Alabama, Georgia, Tennessee, South Carolina and Florida have not expanded Medicaid, the government health program for low-income and disabled residents, which means at-risk people might be less likely to visit a doctor and start on PrEP, Sullivan said.

In the South, Black patients made up 21% of PrEP users but had 52% of new HIV diagnoses.

Also, Black residents tend to have less access to equitable care. In metro Atlanta, more PrEP clinics are clustered in northeast communities that tend to be more white and affluent compared to southwest Atlanta communities that have more Black residents and higher HIV rates, Sullivan said. People from the southwest neighborhoods often must take a bus to get to the clinic for routine testing – a trip that can take up to 90 minutes.

"Those kinds of things really make a big difference," Sullivan said.

Clinic reaches Latino population in South Florida

The two U.S. counties with the highest rates of HIV are in South Florida – Miami-Dade and Broward counties.

The clinic Latinos Salud has four locations in the two counties to provide PrEP and medical services primarily to gay Latino people, HIV patients and transgender people.

While the use of the medication is disproportionately low among Latino populations, Latinos Salud has sought to reduce stigma and other barriers keeping people from getting care.

"If you have a facility that makes people comfortable enough to test, then there is no additional stigma," said Stephen Fallon, executive director of Latinos Salud.

Fallon said the clinic does not charge patients out-of-pocket costs such as copays, and Salud offers free care for uninsured patients, sometimes even purchasing health insurance on their behalf.

According to Fallon, 83% of the clinic's patients on PrEP identify as Latino.

"We're really doing a much better job of keeping people sustained on PrEP," Fallon said.

Sullivan said it's important for the medical community and users to view PrEP medication as a normal part of medical care, similar to people who take drugs to manage diabetes or high blood pressure.

"We just have to be sure that all these options are offered in medical settings and treated like any other medical service," Sullivan said.

Ken Alltucker is on Twitter as @kalltucker or can be emailed at alltuck@usatoday.com

This article originally appeared on USA TODAY: Why HIV prevention drugs, PReP is inaccessible for at-risk populations