Self-perceived HIV risk, learning about pre-exposure prophylaxis (PrEP) via trusted sources, positive healthcare experiences and health insurance coverage are facilitators of PrEP initiation and continuation for at-risk minority women, according to research conducted in New York City and published in the Journal of the Association of Nurses in AIDS Care.
The investigators identified three distinct phases in the PrEP continuum, each with its own facilitators and barriers: seeking PrEP; linkage to PrEP care; and starting and remaining on the therapy.
“Our study contributes important findings about facilitators of and barriers to PrEP uptake among actual women prescribed and using PrEP as opposed to potential PrEP users,” comment the authors. “Barriers led to ongoing deliberation about possible benefits and risks of PrEP use among our participants…when women encountered misinformation about PrEP or had concerns about copayments for medication or the safety of PrEP, this prompted an internal process of heavily weighing potentially negative aspects of engaging with PrEP with potential benefits.”
All the participants described thoughtfully weighing up the pros and cons of PrEP... Concerns about side-effects featured prominently in this process.
In some cases, this led to delays in PrEP initiation, despite ongoing HIV risk, missed appointments or not filling prescriptions. “These findings suggest urgent need to focus future initiatives on increasing PrEP uptake and use among minority women,” write the researchers.
PrEP is a highly effective way of preventing infection with HIV. However, in the US, uptake of PrEP by women remains low, especially for women from minority ethnic groups. In New York City, 91% of new HIV infections among women are in black and Latina individuals. Little is known about the potential facilitators and barriers to starting and remaining on PrEP among women.
A team of investigators from the Oval Center, a sexual health clinic in the Bronx, therefore designed a study involving 14 women who started PrEP between October 2016 and May 2017.
Structured interviews were designed to determine:
- How the women first learned about PrEP
- Motivations for starting PrEP
- Experiences accessing PrEP
- Experiences starting and remaining on PrEP.
The participants’ answers were reviewed by a group of researchers who sought to find common experiences that cast light on the stages of the PrEP care continuum as well as the facilitators and barriers to starting and remaining on PrEP.
The participants had a median age of 40 years. Most were Latina (50%) or black (35%) women. Approximately half (43%) had a college degree. All were cis-gendered and reported condomless sex with at least one male partner.
The first phase of the PrEP continuum was seeking PrEP. A key facilitator was self-awareness of increased HIV risk. Eleven of the women were in a relationship with an HIV-positive partner at the time they sought PrEP. The medication was often sought as a replacement for, or in addition to, condoms. One 36-year-old black woman in a sero-discordant relationship told the investigators:
“I honestly believe if it wasn’t for PrEP I probably would be HIV-positive…it was like a second safety net, so to speak.”
For women not in a sero-discordant relationship, an understanding that inconsistent condom use and multiple partners put them at risk of HIV was a motivation for starting PrEP.
Having a trusted referral source – a primary healthcare provider, partner or close friend – also facilitated seeking PrEP. As one 49-year-old Latina woman explained:
“I found out because I have a friend more than 33 years…He’s HIV-positive. So, I told him I’m going out with a partner – he’s HIV-positive. He was telling me to go to a clinic, that they had services for PrEP.”
But some participants said they initially dismissed PrEP as an option because of misinformation in the media or a lack of information about how PrEP works. One participant said she believed the therapy was only for gay men, while another said that neither the media nor their GP provided information about PrEP.
Linkage to care was the second phase. Having positive interactions with healthcare providers was an important facilitator in this phase. One participant noted her appreciation of her provider’s expertise and competence:
“I felt comfortable with him cause I knew he was a well-educated doctor and he specializes in these things, so I felt okay, comfortable.”
Two women not in sero-discordant relationships accepted PrEP prescriptions after clinic staff convinced them of their HIV risk. Having a calm, quiet environment where anonymity was assured also inspired confidence. Flexibility of follow-up and having access to a conveniently located clinic were appreciated.
Another key facilitator in this stage was having appropriate health insurance. All but one participant had Medicare coverage.
The last phase in the continuum was starting and remaining on PrEP. A key barrier in this stage was either lack of information or inaccurate information about PrEP. For instance, one woman who sought PrEP after having condomless sex with a partner of unknown status was told by a healthcare provider that she did not need PrEP; she only accessed the therapy after attending a different clinic.
While most of the women found the risk of side-effects acceptable after discussion with clinical staff, others had concerns about the safety of PrEP. One 39-year-old Latina participant commented:
“If this is that strong of a drug such that you can have unprotected sex with someone and not get HIV, I’m like, ‘Dang, the side effects must be through the roof’.”
Pharmacy problems were also common, with about a third of participants reporting difficulty filling or picking up prescriptions. Out-of-pocket expenses, such as the cost of travel to the clinic or pharmacy, were also a potential barrier, as were insurance co-payments. Even $3 was unaffordable for one participant, with another reporting that she was asked to contribute $368 to the cost of her prescription.
All the participants described thoughtfully weighing up the pros and cons of PrEP – a process described by the authors as “PrEP rumination.” Concerns about side-effects featured prominently in this process for several women, with descriptions of how they sought to balance the potential risk and severity of adverse events against the benefits of PrEP and their risk of contracting HIV. Pharmacy delays and misinformation also caused individuals to reconsider the benefits of PrEP.
“Pre-exposure prophylaxis continues to be underutilized by minority women at risk for HIV infection. Identifying barriers to and facilitators to PrEP uptake among women prescribed and using PrEP, such as the novel cognitive phenomenon of PrEP rumination, may be helpful when considering how to optimize PrEP delivery to high-risk women in need of PrEP,” conclude the investigators.
“Our findings way help to inform the development of future interventions focused on promoting PrEP uptake among minority women in urban settings,” they say. The authors stress three key findings: the importance of trust; discussion of risk in a non-judgmental way; culturally sensitive, convenient and accessible healthcare settings.
Park CJ et al. Pathways to HIV pre-exposure prophylaxis among women prescribed PrEP at an urban sexual health clinic. Journal of the Association of Nurses in AIDS Care, 30: 321-29, 2019.