Since 2012, medications designed to protect people from contracting HIV have been hard at work. Pre-exposure prophylaxis (PrEP), as they’re collectively known, can take the form of shots or, more commonly, a daily pill, depending on the specific drug and source of risk.
According to the Centers for Disease Control and Prevention (CDC), PrEP “reduces the risk of getting HIV from sex by about 99% when taken as prescribed.” The agency notes that PrEP, alongside other measures, has played a part in reducing US HIV transmissions by 8 percent between 2015 and 2019.
PrEP use has primarily been associated with men who have sex with men, Mike Barry, a researcher at the University of Washington’s epidemiology department, told Filter. But other populations that could benefit from this protection are seeing very low uptake.
The team sought to better understand why people who inject drugs aren’t accessing PrEP more readily.
People who inject drugs may risk HIV transmission through practices like sharing needles—one reason, of course, why access to sterile syringes is vital. This population made up 10 percent of all new HIV transmissions in the United States in 2018.
Barry and a team of researchers at the university sought to better understand why people who inject drugs aren’t accessing PrEP more readily. In their recent paper, published in the Harm Reduction Journal, the team identified several significant factors. These “really illustrate the structural and individual issues” at the core of the matter, Barry said.
The team’s work began in 2019, as a part of a larger research effort looking into the feasibility and acceptability of delivering hepatitis C medicine through a community organization in Seattle. They began developing questions about PrEP uptake among people who inject drugs.
The team then used the questions to interview 24 individuals and four four-person groups. As they proceeded, they made use of a technique in which they began by interviewing a few subjects, looked at the answers they received, and updated the questions for future interviews based on trends in the previous talks.
All 40 respondents had injected drugs at some point in the last three months, though Barry noted that many had done so more recently. He also said that around 80 percent were experiencing homelessness, and that many of them were older and had been injecting drugs for 20 to 30 years.
“We definitely reached a population that was really at the intersection of … a lot of marginalized experiences,” he said.
The paper identified three major areas that acted as barriers to PrEP being adopted among the participants.
“Even the folks who were aware of it didn’t necessarily know a lot about how it works.”
First, knowledge of PrEP was limited—some of the participants had not heard of it at all. This was exacerbated by the fact that provision of information and discussions around HIV risk and prevention in general were rare, the paper noted.
“These folks probably represent a population that has not been reached with proper messaging in the same way as [men who have sex with men],” Barry said. “But even the folks who were aware of it didn’t necessarily know a lot about how it works.”
Some of the participants were older (the median age was 37), and Barry said he’s hopeful that younger people who use drugs might be more aware of what’s out there.
The finding echoes some previous research. One paper from last September similarly notes that a general lack of awareness was one barrier.
Another study, however, found “high awareness and willingness to use PrEP” among people who inject drugs in Los Angeles. Yet uptake in the city remained low, suggesting the presence of additional barriers.
In the University of Washington study, another common theme was that getting HIV prevention treatments was simply not seen as a huge priority by some of the participants. In fact, almost half (47 percent) said they were not overly concerned about HIV. Some of the interviews suggested that when people are living outdoors and have hepatitis C (as some of the participants did), they may want to focus on seeking to get that disease treated before trying to prevent something else.
One participant, for example, said that they weren’t against taking PrEP, but were concerned about taking it alongside other medications, such as hep C meds. And “I probably would want to take care of the hep C first,” the person said, as quoted in the paper.
“I would speculate that is a really commonly held perspective,” Barry said.
In other words, people in hugely challenging circumstances may well have priorities that they view as more urgent.
“Being out here on the streets … I’m not going to go out of my way to take it every day.”
Environmental and personal barriers were other common factors that Barry and his team found. For instance, for unhoused people, accessing PrEP in the first place may pose logistical challenges. For someone living outdoors and experiencing mental health issues and/or chaotic drug use, it may also be difficult to remember to take the pills at the necessary times.
“Being out here on the streets and taking a medication to prevent a disease that we don’t have is going to, in my opinion, cause problems, because I’m not going to go out of my way to take it every day,” another participant told the team.
While not among the key findings in the paper, cost and ease of access to PrEP are other factors. That’s not surprising when a month’s worth of PrEP can run to $2,000 for brand-name drugs—not including the cost of lab tests and doctors’ visits. The cost of generic PrEP can be much lower, at about $60. But that’s still out of reach for many marginalized people.
According to Barry, most people living unhoused in Seattle would have access to the State of Washington Medicaid plan, which entirely covers PrEP medications. However, he noted that PrEP coverage would vary between states.
People who use drugs may also avoid seeking medical help due to the stigma they face in medical settings. The paper notes that the CDC has recommended PrEP patients visit providers between two and four times annually for regular therapy, but Barry noted that this frequency may be another barrier for people who use drugs.
So even those people who inject drugs and have health insurance face barriers to PrEP uptake. One study from earlier this year looked at de-identified data from a commercial insurance claims database. “Although [PrEP] implementation among persons who inject drugs has been inadequate, national HIV monitoring programs do not include data on PrEP, and specific trends in PrEP use are not well understood,” its authors noted.
Of 110,592 claims from people “with evidence” of having injected drugs, it found that just 170, a small fraction of 1 percent, had received PrEP.
The paper states that PrEP “should be consistently offered” along with other harm reduction services and substance use disorder treatment.
Similarly, another research effort—yet to be published—will soon study the feasibility of nurse practitioners handing out both medications for opioid use disorder and PrEP. Those researchers plan on gathering data this coming year.
When PrEP could be such a valuable resource for people who inject drugs, identifying barriers to access is only a first step. The next will be making access happen.