Despite advances in HIV care, the HIV epidemic remains a significant public health concern in the United States. In 2017, there were 38,281 new diagnoses of HIV infection. Ohio has one of the highest HIV incidences in the Midwest, with 8.8 diagnoses per 100,000 persons.1 Nationally, women account for 1 in every 5 new infections, with black/African American (AA) women comprising almost 60% of new HIV diagnoses in women.2 In Cleveland, Ohio, 15% of new HIV diagnoses in 2017 were in women, disproportionately affecting black/AA women.3
HIV pre-exposure prophylaxis (PrEP) is highly effective at preventing HIV among both men and women when taken with high adherence.4–6 The US Centers for Disease Control and Prevention estimates that 1.1 million people in the United States would benefit from taking PrEP. Of those, 176,670 (16.1%) are heterosexual women.7 However, recent studies demonstrated that only 4% to 6% of PrEP prescriptions went to women in 2016 and 2017.8,9
Despite the significant number of women who might benefit from PrEP, few studies have assessed attitudes toward PrEP in heterosexual cisgender women in the United States. Most have been focus groups enrolling high-risk women in large urban cities10–12 or specific high-risk groups such as sex workers13,14 or those who inject drugs.14,15 Recently, survey-based studies from the Middle Atlantic and the Southern regions of the United States have shown low awareness of PrEP among women.16–18 To better understand heterosexual women's attitudes toward PrEP in the Midwest, we collected survey data from 2 community sexual health clinics in Cleveland, Ohio. For the context of this study, PrEP is defined as oral use of tenofovir disoproxil fumarate/emtricitabine with the goal of HIV prevention.
Participants were recruited from 2 sexual health clinics in Cleveland, Ohio, from August 2015 to July 2016. Participants' involvement was voluntary and anonymous. Participants were offered the survey as part of their initial registration paperwork for that visit, which they completed before their appointment. Surveys were deposited in a sealed box, and no identifiable information was collected. No financial or material incentives were provided for participation. All study procedures were deemed exempt by the local institutional review board.
Participants were provided a definition of PrEP (a daily pill that would prevent the participant from acquiring HIV) and asked to report their age, sex (male, female, or transgender), race/ethnicity, sexual orientation, and engagement in high-risk behaviors (i.e., intravenous drug use, condomless sex, multiple sex partners, and sex with an HIV-positive partner). To assess attitudes toward PrEP, participants were asked whether the participant has ever heard of PrEP, would be willing to use PrEP if recommended to them by a provider, and knows where to access PrEP. Participants were also asked to report their self-perceived risk of acquiring HIV and whether the participant believed they would benefit from taking PrEP. Lastly, all participants were asked to report their main concern (adverse effects, cost, stigma, or ability to take a daily pill) about PrEP. Pre-exposure prophylaxis resources were provided at the end of the survey, and participants were encouraged to ask about PrEP during their clinic visit.
Age was categorized into greater or less than 30 years, based on Ohio Department of Health statistics showing higher rates of HIV diagnoses in adults younger than 30 years.3 Race was categorized into black/AA race versus nonblack race to highlight the racial group at highest risk of HIV acquisition. Comparison of categorical variables was done using χ2 and Fisher exact tests. Multivariate regression modeling was performed to assess the independent contribution of age, ethnicity, and report of high-risk behaviors (independent variables) on awareness of (dependent variable 1), access to (dependent variable 2), and interest in more information on (dependent variable 3) PrEP. All statistical analyses were performed using SAS version 9.4 (SAS Cary, NC).
Among 901 patients surveyed, 418 were women, of whom 351 reported having sex with men. There were 208 (60.0%) women younger than 30 years. One hundred ninety-nine (56.7%) self-identified as black/AA, 85 (24.2%) as white/Caucasian, 45 (12.8%) as Latino/Hispanic, and the rest as mixed/other. Thirty-two reported having condomless sex with more than one partner, 16 reported having sex with a partner with unknown HIV status, 2 reported having sex with an HIV-positive partner, and none reported engaging in intravenous drug use.
Awareness, Access, and Attitudes Toward PrEP in Heterosexual Women
Overall awareness of PrEP among heterosexual women was 14.5%. However, 75.9% were willing to try PrEP, and 50.9% wanted more information on PrEP. Only 6.8% reported high self-perceived risk of HIV acquisition, although 13% reported engaging in high-risk behaviors and 22.4% reported believing they would benefit from taking PrEP. Only 20.5% knew where to access PrEP (Table 1). The most common concern regarding PrEP was adverse effects (65.4%) followed by cost (20.0%), adherence (8.6%), and stigma (6.0%; data not shown).
There were no significant differences on outcomes by race, although there was a trend toward more black/AA women reporting that PrEP would benefit them than did nonblack women (26.5% vs. 16.8%, P = 0.055).
In logistic regression analysis, age, ethnicity, and engaging in condomless sex were not associated with PrEP awareness. Age greater than 30 years (odds ratio [OR], 0.44; 95% confidence interval [CI], 0.22–0.87) was associated with lower knowledge of how to access PrEP. Being black/AA (OR, 2.03; 95% CI, 1.14–3.61) and having condomless sex with multiple partners (OR, 3.70; 95% CI, 1.40–9.79) were both independently associated with reporting interest in PrEP. Having an HIV-positive or unknown partner and use of injection drugs were not included in the model because of lack of stability from low number of participants (Table 2).
The data presented here represent one of the first surveys to ascertain factors associated with awareness of, access to, and interest in PrEP among heterosexual women in the United States.19
Our findings from the Midwest are consistent with earlier studies across the United States, corroborating that PrEP awareness among women is low16–18,20 but willingness to use PrEP16,17,19,21 and interest in PrEP10–12 has been high. However, although Raifman and colleagues18 reported significantly lower awareness among black and Hispanic women and increased awareness among the 25- to 34-year age group, we did not observe racial or age differences in awareness. This may be due to an overall low awareness rate in our study population, which was similar to that of black/AA women in the study by Raifman et al.,18 highlighting the low awareness of PrEP among all women in Cleveland, Ohio, compared with other areas of the United States.16,18 Engagement in condomless sex with multiple partners was also not associated with increased awareness of PrEP, indicating low awareness even in women at high risk of HIV acquisition. Black/AA women and those engaging in high risk behaviors were more likely to report interest in PrEP, similar to prior studies22,23 demonstrating that women with HIV risk factors are interested in learning more about how to protect themselves. Increasing outreach campaigns for women who are at high risk of HIV could support more women in using PrEP.
Access is another major barrier to PrEP utilization among women in the United States.20 Our findings demonstrated that most women did not know where to go to learn more information on or to obtain PrEP. Women older than 30 years were less likely to know where to access PrEP compared with the younger women. This may be due to younger women's increased use of online resources and/or younger women's increased exposure to sexual health education programs usually targeting the young adult population, or other factors not captured in our survey.
Women reported adverse effects followed by cost as their top concerns regarding the use of PrEP, confirming findings by others.16,24,25 Pre-exposure prophylaxis has proven to be safe in both men and women with minimal bone and renal toxicity,6 although there are limited data on the safety of PrEP in pregnancy.26 Cost is a major barrier to PrEP access and includes cost of laboratory expenses, provider visits, and medication costs. Medicaid expansion in Ohio now covers all PrEP-related expenses at little or no extra cost.27 For others with insurance but continued financial barriers, Gilead provides a medication and copay assistance program that covers medication costs.28 With the goal to end the HIV epidemic by 2030,29 the new Grade A US Preventive Services Task Force recommendation to discuss PrEP with patients at high risk,30 and the forthcoming availability of generic TDF/FTC,31 the financial landscape of PrEP might improve. Future PrEP outreach programs should ensure that women are provided with resources to support informed decisions regarding PrEP.
Black/AA women are at disproportionately high risk of HIV acquisition compared with other women. Our data demonstrate that despite the higher risk, black/AA women were no more aware of PrEP or how to access it than other women. Nevertheless, the willingness to try PrEP among black/AA women was high. Black/AA women were also more likely to believe that PrEP would be of benefit to them and being black/AA was associated with expressing interest in more information on PrEP. These results are consistent with prior studies demonstrating that black/AA women were more likely to report use of PrEP than white women.22,32 This suggests that black/AA women might be aware of their heightened risk of HIV acquisition as a community and motivated to mitigate that risk.
Our study has limitations. To minimize survey fatigue, we did not include questions on socioeconomic background, education level, or details on drug use and sexual behaviors, which might have provided insights into the influence of personal factors on attitudes and interest toward PrEP. In addition, our survey may have been subject to nonresponse bias.
In summary, this study demonstrated that heterosexual women attending sexual health clinics in Cleveland, Ohio, had low awareness of PrEP and how to access it, but interest in using PrEP was high. Future research should assess the best strategies to engage and equip heterosexual women with the means to protect themselves from HIV, and on identifying and reducing barriers that women experience to PrEP access and retention in care.
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