Not that long ago, a man in his mid-20s whom Morgan Farrington calls Kiddo showed up at her house with a fever, chills, and nausea. He was increasingly out of it. These were all signs of an abscess from missing a vein and using someone else’s syringe, said Farrington, founder of Goodworks, in Huntsville, Alabama.
But it wasn’t just an abscess. It was four blood clots and sepsis. He’d been craving his next fix of heroin so hard, and the relief that comes from the act of shooting up itself, that he’d dug a 3-day-old blood shot – a used syringe with someone else’s blood in it – out of the garbage and had used it.
“He was almost dead,” said Farrington. “Another day, maybe two, he would have been dead, for sure, for sure.”
Farrington gets it. She has her own history of injection drug use. She knows the compulsion to, in her words, “shoot up sugar water just to get a hit.” And that’s fine, she said. “I just wish that he would do so with his own safety in mind.”
So when he got out of the hospital a few weeks later, Farrington talked to him about not just clean syringes but also HIV pre-exposure prophylaxis (PrEP), the daily HIV prevention pills that have been found to be up to 84% protective against HIV in people who inject drugs. Both approaches – syringe services and PrEP – play a key role in the president’s new National HIV/AIDS Strategy. The strategy calls for expanding access to both services in traditional and nontraditional settings but doesn’t include mechanisms for that to happen.
Of the 1.2 million people in the U.S. who could benefit from PrEP, according to the Centers for Disease Control and Prevention, 23% are using it. But according to data published in 2020, just 0% and 5% of people who inject drugs who could benefit are using it. And most, like the guy Farrington continues to talk to, don’t even know it exists.
People who inject drugs are willing, clinicians may not be
Clinicians have a role to play, but right now, many clinicians act as gatekeepers, picking and choosing whom they’ll offer PrEP to. In 2014, just 1% of PrEP prescribers said they had prescribed the prevention pill to people who inject drugs. And recent data published in AIDS and Behavior showed that clinicians who expressed negative attitudes about people who injected drugs were less likely to offer to prescribe PrEP to a theoretical man who injected drugs asking for PrEP. There was a paradox in there, however: Clinicians were also more likely to think men who inject drugs were at high risk for acquiring HIV. But they also believed those men would be less likely to adhere, less safety conscious, and less responsible than gay and bisexual men. So, the investigators found that despite need, clinicians were more likely to prescribe to men at risk via sex than men at risk via injection drug use.
According to the CDC, to qualify for PrEP, the only requirements for people who inject drugs are testing negative for HIV and not sharing injection equipment – whether their injecting partners have confirmed HIV or whether their HIV status is unknown.
“As long as PrEP is a prescription, medication providers are really going to determine who accesses PrEP and who does not,” said study lead author Sarah Calabrese, PhD, assistant professor of psychiatry at George Washington University. “Even if you do anticipate that a patient might have adherence struggles. The solution is not withholding something that could be beneficial to them. The solution is supporting them to take that beneficial medication.”
And it appears that providers and regular people like Farrington have stepped into the access vacuum, with a decidedly harm-reduction approach: syringe services programs. While there’s no national data on how many people receive PrEP through needle exchange programs, those programs are the natural place to offer other health care services, said Hansel Tookes, MD, assistant professor of medicine at the University of Miami and founder of the Infectious Disease Elimination Act (IDEA) Syringe Exchange program and clinic. At the clinic, 80% of the people living with HIV have undetectable viral loads – a sign of good adherence to medication and general health. Previous research suggests that when people who inject drugs find out about PrEP, 57% are game for trying it. But early work suggests that people who inject drugs might need to access PrEP in a different way from other people who use PrEP.
Dr. Tookes is currently conducting a study looking at whether referring people who inject drugs out from needle exchanges to PrEP prescribers is as effective as offering it on site at the exchanges.
“My experience in the past 5 years of being faculty at the university and being a cofounder of a program like IDEA is that we really, if we’re going to be successful with engaging people who inject drugs in things like PrEP, we have to, like all things harm reduction, meet them where they’re at, both physically and mentally, and on their own terms,” said Dr. Tookes. “What better place than a syringe services program?”
Where people are: the exchanges
That’s where community health worker Farrington and others come in. More than 400 syringe access programs that exist in North America have PrEP programs, according to the North American Syringe Exchange Network (NASEN), and 86 of them report offering access to PrEP, either directly or through referrals. It’s an HIV prevention one-two punch: PrEP protects a person once they are exposed to HIV, and needle exchanges themselves reduce HIV transmission rates by reducing the odds that people will engage in behavior that exposes them to the virus in the first place.
So far, PrEP access for people who inject drugs looks different everywhere. At Las Vegas’ Huntridge Family Clinic, people can come to the lobby and pick up clean supplies from a syringe exchange vending machine, and while they’re there, talk to nurse practitioner Rob Phoenix, MSN, APRN, about HIV prevention.
In Cincinnati, where Adam Reilly, CDCA, runs a Ryan White–funded PrEP program out of the nonprofit Caracole, PrEP navigators go out with the syringe services vans run by the county health department and can connect them with providers willing to prescribe it. In Alabama, where needle exchanges are illegal, Farrington works as a community health worker through the North Alabama Area Health Education Center to go in to Huntsville’s legal tent cities to offer HIV and hepatitis C testing and tell them about PrEP. In Philadelphia, Drexel University, the city Department of Health, and Prevention Point Philadelphia co-offer PrEP through Prevention Point, which increased the number of people who inject drugs taking PrEP from just two to three a year to 584 times in 2021, according to Andres Freire, director of harm reduction health services at Prevention Point Philadelphia.
“Co-locating a PrEP clinic with our syringe-services program is the most effective means of delivering care to people who use drugs,” he said. “It is a friendly, nonstigmatizing place, as well as a place where individuals are already coming for services.”
At Dr. Tookes’ IDEA clinic and its PrEP study, people who inject drugs can not only get clean supplies, they can get a PrEP prescription on site and store their medications at the exchange so they don’t get stolen or used by others. And that idea didn’t come from him.
“It was one of my patients,” he said. “That person gave me an idea that impacted the health of hundreds of people in Miami.”
Indeed, Boston Health Care for the Homeless Program does the same. New data showed that what really worked for people who injected drugs in the group was not just medication storage on site but also PrEP prescriptions that lasted just a week at a time, or even same-day prescribing, as well as the program’s PrEP nurses showing up in person to their communities. That program managed to get PrEP referrals to 239 people, 152 of whom started taking PrEP. Six months later, 22 people were still using it.
But Dr. Tookes’s is a rare study on PrEP among people who inject drugs. The only data so far on the efficacy of PrEP for this group come from a 2013 study out of Thailand. Angela Bazzi, PhD, an associate professor of family medicine and public health at the University of California, San Diego, who studied the Boston program, said the dearth of research into effective ways of getting PrEP to people who inject drugs is fueling a negative feedback loop, where people who inject drugs and their providers largely don’t know about the HIV prevention pills, don’t see research on it, and therefore think it won’t work in people who inject drugs.
“There’s been a systematic exclusion of people who inject drugs from HIV prevention drug trials,” Dr. Bazzi told this news organization. Together with colleagues she wrote a viewpoint on the issue that was published in the International Journal of Drug Policy. “It really extends into effectiveness research, public health research, and clinical practice. We argued that the stigma surrounding addiction is the key driver of this.”
This is especially important, she said, because the U.S. Food and Drug Administration had been expected to make an approval decision on an injectable form of PrEP by Jan. 2021. That drug, cabotegravir, has been found to work for a month at a time. Injection drug users were excluded from the primary clinical trial of that drug, though a ViiV Healthcare spokesperson said the company is planning an after-market study in people who inject drugs some time in the future.