Two years ago, when researchers working in Philadelphia’s Kensington community began offering medication to prevent HIV to women who regularly inject drugs, many jumped at the opportunity.
The researchers — from Drexel University, Johns Hopkins University, the University of Michigan, and the University of Miami, as well as the local public health organization Prevention Point — were trying to gauge the women’s interest in pre-exposure prophylaxis drugs, or PrEP, distributed through a syringe-exchange service like Prevention Point.
More than 70% of the women contacted for the study decided to start PrEP. But PrEP works best when taken consistently — and just 17% of that group ended up taking the medication six out of seven days a week.
So the researchers asked 23 participants what had happened. The result was a series of interviews that illuminate just how difficult it is for women to survive daily life at the heart of Philadelphia’s opioid crisis, and how broader social issues affect health-care access.
Women in the study talked about how the prevalence of fentanyl — the powerful synthetic opioid that has largely replaced heroin in Philadelphia — means they spend much of their time trying to stave off painful withdrawal. They spoke about how a lack of housing made it difficult to keep track of medication, or prevent it from getting stolen. They told researchers they stopped taking PrEP because they were arrested, or because they entered drug rehab, and weren’t allowed to continue on the medication.
“There’s no single magic bullet that’s going to prevent HIV or stabilize women’s lives,” said Alexis Roth, an associate professor of community health and prevention at Drexel and one of the study’s authors. “People need access to a whole host of supports to be able to best protect their health.”
The rise of fentanyl has complicated almost every aspect of life for people in addiction in Kensington. It is stronger than heroin, but its effects wear off more quickly, meaning people who have become accustomed to fentanyl must take it more often to avoid withdrawal.
In addition, the need to inject fentanyl more often puts people in addiction at a higher risk of HIV if they cannot get clean needles for each injection, Roth said.
“If you look at the HIV outbreaks that have happened nationwide, the ones occurring in fentanyl-dominated markets have seen increases in the frequency with which people are injecting,” she said. “If there isn’t a simultaneous increase in harm-reduction tools, people have to make sacrifices.”
The scramble to find money to avoid the misery of withdrawal makes it difficult to concentrate on anything else, including taking medications like PrEP.
“You’re only high for a short period. You’re sick again in literally three hours and you have to use again,” one woman told researchers, using a common euphemism for withdrawal. Some women engage in sex work to earn money for fentanyl, putting them at higher risk of contracting HIV.
“I’ve slept with a couple guys without [condoms],” one woman told researchers. “Sometimes you’re desperate. It’s not that you want to do it. It’s just — when you’re sick, you’re sick. And the money sounds right. But then, after, you are like, ‘What did I do?’”
Women in the study often called themselves “irresponsible” or “forgetful” about taking pills. But, researchers wrote, the study participants’ interviews showed they were “highly motivated and responsible for attending to their daily survival needs.”
“However,” the researchers wrote, “the challenges of daily survival made prioritizing daily PrEP nearly impossible.”
Roth said she’s hoping to conduct more research aimed at helping alleviate pressures preventing women who inject drugs from taking PrEP.
“What’s next is taking what we’ve learned here and trying to come up with an intervention that is responsive to what women were telling us might work,” she said. “The story for PrEP with these women isn’t that it can’t be done. It wasn’t that they don’t want to do it. It’s that they need some support.”