‘If you only have to take a pill once a day to protect yourself…it’s a miracle’: experiences of PrEP for women who inject drugs in the US

Among a group of women who inject drugs in Philadelphia, many saw pre-exposure prophylaxis (PrEP) as a beneficial way of preventing HIV infection, resulting in a decision to accept free PrEP. Women who believe that PrEP is beneficial see HIV as a severe threat to themselves personally. However, for a small number of women in the study, barriers such as HIV-related stigma, fear of side effects and worry regarding continued PrEP access outweigh perceived benefits and result in a decision to decline free PrEP. This research was published in Archives of Sexual Behaviour by Marisa Felsher at Drexel University and colleagues.

While people who inject drugs represent only 3% of the US population, they represented 6% of all new HIV infections and 28% of AIDS-related deaths in 2017. Women who inject drugs report more drug and sex-related behaviours that place them at risk for contracting HIV than men. Using male condoms and clean injection materials consistently often require negotiation with male partners – factors that women who inject drugs cannot easily control.

PrEP offers an effective means of preventing HIV infection that is more readily controlled by women who inject drugs. However, there has been little research with this key population to understand the beliefs that they have about HIV, and how these beliefs influence their decision to accept or decline an offer to use PrEP.

The study

From 2018 to 2019, as part of a larger study which offered PrEP to women who inject drugs enrolled in a syringe services programme, a smaller group of women were interviewed in order to explore beliefs linked to HIV risk and how these affected PrEP uptake. Interviewees needed to be considered at-risk for HIV infection and therefore be eligible for starting PrEP (engaging in transactional sex, syringe sharing or having an HIV-positive partner). 

Interviews were conducted with 25 women, either face-to-face or by telephone. Eighteen of these women had chosen to start PrEP, while the other seven had declined the offer of free PrEP. The median age was 37, over 80% were white and nearly half had not completed high school. Over half of the women were homeless at the time of the study. Over two-thirds of the sample rated their health status as either poor or fair, while just under half saw themselves as extremely or very likely to contract HIV. Seventy-two per cent reported transactional sex, 76% reported inconsistent condom use, 52% of women reported sharing injecting material and 40% had been sexually assaulted in the past year. Interview questions dealt with women’s perceived HIV risk, how useful they believed PrEP would be, potential barriers to using PrEP and reasons for accepting or declining a PrEP prescription.

HIV susceptibility and severity = perceived threat 

Women believed that they were at risk for HIV infection because of factors both within and outside their control. Some indicated that if they consistently engaged in harm reduction behaviours (such as using clean needles), their HIV risk was reduced. However, there was an acknowledgement that this was not always possible, due to their opioid addiction and the need to avoid painful withdrawal symptoms.

“I’m not very vulnerable [to HIV]. I’m pretty safe. I don’t have sex with random people and I do not share any type of [injection drug] supplies.”

“It gets real [hard]. I don’t like to be dope sick…When you’re sick you don’t care. You ask your girlfriend, ‘Do you have a set of works?’ and you’ll use ‘em.”

Women were most concerned about risk factors outside their control, especially sexual assault. PrEP was seen as something that would work all the time, and be within the women’s control.

“I work— [do] street [sex] work, so yeah [I’m] very vulnerable to HIV...Just the fact I’ve gotten raped a few times, that impacted my decision [to get on PrEP].”

“There’s needles all over the streets…In the summertime, wearing flip-flops, you step on a needle…You could fall, shit happens. So...I need [PrEP] regardless of how I’m living.”

Women who saw HIV as a life-threatening illness with severe health consequences, or who knew someone who living with HIV, were more likely to see PrEP as an attractive preventative option.

“I don’t want to die from HIV. I don’t want the doctor to come and tell me, ‘You’ve got HIV. You’re gonna die in a horrible death.”

Benefits of starting PrEP 

Despite the fact that not all participants opted to start PrEP, all participants recognised that PrEP is a beneficial prevention tool for anyone at risk for HIV.

“In actuality, if you only have to take a pill once a day to protect yourself, and not getting the [HIV] virus, it’s a miracle…”

For the women who opted to accept PrEP, the main benefit reported was that it is a tool that is within their control and does not require any co-operation from sex partners. This was especially relevant in the context of sex work.

“[PrEP] is awesome...in prostitution, jerks take the condoms off. You tell them to use a condom and they don’t...So we can protect ourselves with PrEP.”

Barriers to starting PrEP

The seven women who opted not to start PrEP cited various reasons for their decision. One was a fear of potential side effects and adverse reactions due to other conditions. As many had reported poor or fair health, this appeared to be a significant factor for some women. Fear of side effects from PrEP could be an important factor for women who inject drugs because of their experiences of opioid withdrawal and perceived similarities between these.

“I didn’t take PrEP because I was worried about the stomach side effects… I’m already having a lot of stomach problems, so I didn’t want to put that on top of it. I was thinking about taking [PrEP], but then I didn’t want to risk getting sick…”

Another barrier to starting PrEP was HIV-related stigma. Some women were afraid that they would be seen as having HIV as a result of taking pills for PrEP. Women also feared that this could lead to conversations about why they were taking PrEP and the kinds of behaviours they engaged in that made them susceptible to HIV infection.

“I actually did [want a PrEP prescription] at first….But I was scared that if someone seen [my prescription] they… would put a label on it. Some people might think that’s the pill [you take] because you have HIV.”

While women valued being able to get PrEP through the study at the syringe programme, they thought that getting PrEP outside of the context of the study would be challenging. Some feared that they would no longer be able to access PrEP once the study came to an end. 

“I come, and when my prescription’s done, I get my prescription, I take it to the pharmacy to fill it. I have no problem with it…[Getting PrEP on my own] probably wouldn’t be as easy. It’s hard for people like myself to make appointments.”

Conclusion

The authors acknowledge that while PrEP was acceptable to most women in the study, it may not be the right choice for all women who inject drugs, especially those concerned about events outside their control. “The fear of event-driven unintentional exposures may indicate that post exposure prophylaxis (PEP), which involves taking HIV medication within 72 hours of a potential HIV exposure, may be a more appropriate HIV prevention option for some women, especially those who decline PrEP,” they say.

They conclude by stating: “Our results highlight the importance of removing barriers to care in order to promote uptake among a highly vulnerable population of women who inject drugs. Most women recognized their HIV risk, believed they would benefit from PrEP, and thus, initiated PrEP. However, one-third declined PrEP primarily due to their concerns about PrEP-related side effects and stigma. In order to increase initiation, additional interventions that effectively decreases the saliency of these barriers will be necessary.”