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. Author manuscript; available in PMC: 2021 May 1.
Published in final edited form as: Stigma Health. 2019 Oct 31;5(2):240–246. doi: 10.1037/sah0000194

PrEP Stigma, HIV Stigma, and Intention to Use PrEP among Women in New York City and Philadelphia

Deepti Chittamuru 1,*, Victoria Frye 2,*, Beryl A Koblin 3, Bridgette Brawner 3, Hong-Van Tieu 4, Annet Davis 3, Anne Teitelman 3
PMCID: PMC7654828  NIHMSID: NIHMS1567198  PMID: 33184608

Abstract

Background

Stigma is an important contributor to the continued HIV epidemic in the United States (US). In 2016, women made up nearly one in five of all new infections. Pre-exposure HIV Prophylaxis or PrEP is a medication that can be taken to prevent HIV acquisition; however, PrEP is significantly underutilized by women at risk for infection. How PrEP stigma relates to PrEP initiation among women is not well understood.

Methods

Surveys were completed by 160 PrEP-eligible women aged 18–55 in Philadelphia, PA and New York City, NY. Associations between PrEP stigma, HIV stigma, and PrEP initiation intention were modeled using multinomial logistic regression, controlling for sociodemographic and theoretically-relevant variables.

Results

Participants ranged in age from 18 to 55 years (M = 40.2; SD = 11.78). Most (79%) identified as Black or African-American and/or Latina and 36% had completed high-school or less. Higher PrEP stigma was significantly associated with lower PrEP initiation intention, while controlling for other theoretically-relevant and sociodemographic variables. HIV stigma was not related to PrEP initiation intention.

Conclusions

HIV prevention interventions seeking to increase PrEP initiation among PrEP-eligible, urban women need to address the role that PrEP stigma plays in PrEP uptake.

Keywords: PrEP stigma, HIV stigma, HIV prevention

Introduction

In the United States (US), HIV/AIDS stigma has been found to be associated with negative health and social outcomes (Logie & Gadalla, 2009; Mahajan et al., 2008), and acts as a barrier to HIV testing and prevention (Golub & Gamarel, 2013; Mannheimer et al., 2014) and medical treatment (Lisa A Eaton et al., 2015; Katz et al., 2013; Turan et al., 2017). Among gay, bisexual and other men who have sex with men (MSM), HIV stigma has been found to impede uptake of pre-exposure prophylaxis (i.e. PrEP), a biomedical HIV prevention method critical to the national HIV prevention strategy in the US (Biello et al., 2016; L.A.; Eaton et al., 2015; Golub, Gamarel, Rendina, Surace, & Lelutiu-Weinberger, 2013; Oldenburg et al., 2015). International PrEP efficacy trials were the first to document what would come to be known as PrEP stigma, finding that PrEP uptake and adherence was diminished by fears of what partners, family members or community members would believe about users. This anticipated stigma was based on perceptions that community members, friends, family and partners held stereotyped beliefs including that a PrEP user was HIV infected (and not just taking medication to prevent HIV); engaged in male-male sexual activity; engaged in high risk sex, sex outside the primary relationship, and/or drug use; or had multiple sex partners (see Haire, 2015 for a comprehensive review (Haire, 2015)). In some gay communities in the US, negative stereotypes have been invoked in an attempt to shame PrEP users and would-be users (Calabrese & Underhill, 2015) (e.g., “Truvada whores;” a phrase that was subsequently reclaimed by PrEP proponents(Glazek, 2014)).

Research on the role of anticipated PrEP stigma among men is growing (Brooks, Landrian, Nieto, & Fehrenbacher, 2019; Golub, 2018; Mustanski et al., 2018), whereas such research on women is sparse. One early qualitative study reports that when women are made aware of PrEP, they very much want the option to take it and are interested in a range of formulations and modes of delivery, but that anticipated stigma related to PrEP may act as a barrier to uptake among women (Auerbach, Kinsky, Brown, & Charles, 2015). Other qualitative work suggests that anticipated stigma related to PrEP and HIV may act as a barrier to PrEP uptake among women as well (Goparaju et al., 2017). A quantitative study among women who had recently accessed federally-supported reproductive health care found that women who believe that others endorse negative stereotypes about PrEP users are less comfortable talking to a provider about PrEP; further, anticipated disapproval from important social and other network members (“close others”) is associated with lower uptake intention, if PrEP were available for free (Calabrese et al., 2018). Unfortunately, anticipated PrEP stigma is a barrier because community stigma exists in actuality. A recent street intercept survey of 583 residents of a high HIV prevalence area in New York City found that half of residents surveyed endorsed stigmatizing (stereotyped) beliefs about PrEP users; HIV stigma and PrEP stigma were statistically significantly associated (Farhat, 2016). In another street-based survey, among 178 at-risk women of color, over 50% agreed with the statement, “most people think that someone who is taking medication to prevent HIV is probably having too much sex or sex with the wrong kind of people (Koblin et al.).”

The role of PrEP stigma in uptake is largely unknown among at-risk US women, who underutilize PrEP, despite PrEP having been approved in 2012 by the US Food and Drug Administration (U.S. Food and Drug Administration, 2012) and being recommended by the Centers for Disease Control and Prevention (CDC) for individuals who are at high risk of HIV infection. In 2014, both the CDC and the American College of Obstetricians and Gynecologists issued clinical practice guidelines for women’s PrEP eligibility and use (American College of Obstetricians and Gynecologists, 2014; Centers for Disease Control and Prevention, 2014). Using 2015 surveillance data, recent estimates suggest that nearly 180,000 heterosexually active US women aged 18–59 were eligible for PrEP, meaning they are objectively at high risk of HIV infection (Smith, Van Handel, & Grey, 2018); yet, according to the most recent prescription data, only 2% of eligible women are taking it (Huang, Zhu, Smith, Harris, & Hoover, 2018). PrEP has the potential to reduce HIV incidence among women, although concerns exist that differential uptake may exacerbate racial disparities in HIV. At present, African-American/Black women are four times less likely than white women to have started PrEP (Bush, 2016). Thus, identifying correlates of uptake and intention to initiate PrEP among at-risk women of diverse racial and ethnic backgrounds is needed.

Despite a growing literature on PrEP uptake intention and behavior, little is known about how stigma influences PrEP uptake among at-risk women, particularly alongside other correlates of health risk reduction behavior. To better understand this, we analyzed formative data from the Just4Us study (R34-MH108437-01), a pilot randomized clinical trial of an intervention designed to increase PrEP uptake among at-risk women living in urban areas in the Northeast. In order to develop the Just4Us intervention, the study team conducted formative research, including in-depth interviews (n=41) between 2016 and 2017 (Teitelman & Koblin, 2017) and structured surveys (n=160) in 2017 and 2018 (Broomes, 2019; Frye, Chittamuru, Teitelman, & Koblin, 2018; V. Frye et al., 2018; Matthei, Teitelman, & Koblin, 2018), among at-risk women living in Philadelphia and New York. The Just4Us study was guided by a reasoned action approach, which posits that behavioral intention predicts enactment of the focal behavior and is determined by attitude, subjective norm and perceived behavioral control (Martin Fishbein, 2000; M. Fishbein & Ajzen, 2010). This approach was used to identify modifiable social cognitive factors that could influence intention and thus be the targets of intervention, an approach commonly applied in effective HIV prevention studies (Jemmott III, Jemmott, O’Leary, et al., 2015; Jemmott III, Jemmott, O’Leary, et al., 2015; Jemmott et al., 2013; Zhang, Jemmott III, & Jemmott, 2015). HIV and PrEP stigma were factored into the intervention design and evaluation measures because anticipated PrEP stigma may act independently to reduce PrEP uptake intention. In addition, it may negatively influence attitude via beliefs that evaluate whether the outcome, in this case PrEP initiation, is positive. If potential PrEP users anticipate that an outcome associated with PrEP initiation includes experiencing stigma and discrimination, then the attitude will be influenced by anticipated PrEP stigma. In addition, attributed HIV stigma may relate to normative beliefs as to the acceptability of a certain behavior, which influences behavioral intention as well. Because PrEP use may be associated with HIV, we assessed perceived HIV stigma in an effort to capture how this form of stigma correlates with PrEP initiation intention among women.

Methods

Eligibility criteria

Eligible women were cisgender; aged 18–55; HIV negative (self-report); not taking PrEP currently; and reporting unprotected vaginal or anal intercourse with a male partner and/or injected drugs in the past six months. Drawing from guidelines published at the time of the study from the CDC and NY state (Centers for Disease Control and Prevention, 2014; New York State Department of Health, 2014), women also needed to report at least one of the following behaviors in the past six months: in drug treatment (methadone, buprenorphine, or suboxone); exchanged sex for drugs, money, or services; alcohol abuse (defined as a score of 2 or higher on the CAGE) (Ewing, 1984); diagnosed with chlamydia, gonorrhea, syphilis or a new diagnosis of genital herpes; used powder cocaine, crack, methamphetamines or ecstasy more than one time per week; or responded “yes” or “don’t know” to having a current male sex partner who: injects drugs, is HIV infected, has sex with men, or had been incarcerated in the past six months. All participants needed to understand and read English at a fifth-grade level.

Recruitment and Study Procedures

The primary recruitment methods were direct outreach and snowball sampling, where study staff recruited women in various locations in the community (e.g., methadone programs, in-patient substance facilities, homeless shelters, etc.) using an IRB approved flyer as well as via on-line advertisement (e.g., Craigslist). Upon contact, trained research staff invited prospective participants to assess eligibility, after providing verbal informed consent. Study visits were set with eligible participants, who were also given the option of assisting with recruitment by informing women in their social network about the research study. Interested women were given three coupons to distribute to women within their network. Women who referred participants were compensated with $10 for any of their 3 network members who enrolled in the study. Survey visits were conducted either in private offices at the location where participants were recruited or at the research study sites. After providing written informed consent, participants viewed a two-minute video focused on women and PrEP that provided basic PrEP information (e.g., daily dosing, side effects, efficacy, and role of condom use); this was done to ensure that participants had a rudimentary understanding of PrEP and to facilitate their ability to answer the study questions. The video “Women, PrEP & Sexual Health” from Project Inform is available at https://vimeo.com/186448201. Participants then completed a 30-minute Computer Assisted Self-Interview (CASI) survey or pencil-paper version if a computer was not available. A research staff member was available to clarify questions for participants. At the end of the study visit, participants were compensated $50.00 for their time and offered condoms and lubricant. They were also offered a city-specific Resource Guide containing contact information for a variety of services including PrEP access, STI treatment, contraception, mental health, and substance use, as well as agencies addressing homelessness, domestic violence, and other social problems. The Institutional Review Boards (IRB) of the institutions involved reviewed and approved all study procedures.

Measures

PrEP Initiation Intention, the dependent variable, was assessed using one item “I plan to start PrEP in the next 3 months;” participants indicated whether they strongly agreed or strongly disagreed using a 4-point scale. The primary independent variables were HIV stigma and PrEP stigma. Anticipated PrEP Stigma was assessed using the Women’s PrEP Stigma Scale, which was based both on items used previously by some of the investigators (Farhat, 2016; Beryl A. Koblin et al., 2018) and responses to in-depth interview questions in the formative phase of the Just4Us study. Specifically, we asked “what would be bad about starting PrEP in the next 3 months?” The question generated an emergent set of salient beliefs that indicated that significant anticipated PrEP stigma existed, which could influence intention to start PrEP (Teitelman & Koblin, 2017). We conducted a confirmatory analysis to validate the PrEP stigma scale (SPSS Version 9) and confirmed that all items loaded onto a single component, consistent with a single latent construct related to stereotyped beliefs about women PrEP users (e.g. they are subject to gossip, “promiscuous” and/or actually HIV-positive, etc.). The Women’s PrEP Stigma scale included the following five items: “If I start PrEP, people might: gossip about me; think that I have sex with too many people; think I am actually HIV+; think I am having sex outside my primary relationship; think I am being experimented on.” Higher scores on this scale indicate more anticipated stigma about PrEP initiation (α=0.87). Attributed HIV Stigma was assessed via seven items (Visser, Kershaw, Makin, & Forsyth, 2008): “Most people think less of someone because they have HIV; Most people would reject the friendship of someone with HIV; Most people would not date or have sex with a person they know has HIV; Most people believe that people with HIV should be ashamed of themselves; Most people feel uncomfortable around people with HIV; If you talk too much about HIV, people will think that you have HIV; It is important for a person with HIV to keep it a secret.” Higher scores on this scale (α=0.85) indicated more stigma about HIV. Additional independent constructs, based on the theory of reasoned action, assessed included PrEP Initiation Attitude, assessed via a single item: “My starting PrEP in the next 3 months would be very bad (1) to very good (4)”. PrEP Initiation Norm was assessed via agreement with a single item: “Most people who are important to me would approve of me starting PrEP in the next 3 months”. PrEP Perceived Behavioral Control Belief was assessed by agreement with two items: “If I really want to, I can start PrEP in the next 3 months; It will be easy for me to start PrEP in the next 3 months” (α=0.72). Across these theoretically relevant constructs, higher scores indicated higher levels of agreement on a 4-point Likert scale ranging from strongly disagree (1) to strongly agree (4).

Statistical Analysis

Univariate analyses was used to describe participants’ basic socio-demographic characteristics. Similarly, descriptive statistics were used to summarize the dependent and independent variables included in multivariable analyses. Multinomial logistic regression was used to characterize relations among our primary independent variables and our dependent variable, PrEP initiation intention, modeled as a multinomial outcome. First, we ran simple regression models with each independent variable, i.e. Women’s PrEP Stigma, HIV stigma and other theoretically relevant variables on PrEP initiation intention. Then, we ran multiple regression models testing associations between Women’s PrEP stigma, HIV stigma (independent variables) and PrEP initiation intention (dependent variable) controlling for other theoretically relevant variables, including PrEP initiation attitude, PrEP initiation norm and PrEP initiation perceived behavioral control belief. Finally, we ran a multiple regression model estimating the association of HIV stigma and Women’s PrEP stigma with PrEP initiation intention controlling for the effects of the theoretical correlates and socio-demographic characteristics associated with the outcome at p≤.10. All analyses were completed using SAS V9.4 and SPSS version 21.

Results

Participants ranged in age from 18 to 55 years (M = 40.2; SD = 11.78) and most (79%) identified as Black or African-American and/or Latina. A little less than half (44%) completed high school, GED or trade school; three-fourths (75%) were unemployed. Almost two-thirds (65%) earned less than $12,000 per annum. The majority (85%) of participants experienced financial instability at least occasionally or more often in the past 3 months. About one-fourth (23%) injected drugs; more than half (53%) reported multiple or concurrent sexual partners and almost all of them (97%) had unprotected sex, in the past 3 months. A majority (57%) of participants had sex with MSM, while more than one-third (35%) had sex with a man who had spent time in jail prison in the past 3 months. About one-fourth (23%) had sex with a man who injected drugs; half (50%) had sex with a man who had concurrent partners; and more than half (52%) had sex with men who had themselves had transactional sex, in the past three months.

Table 1 reports the correlations among the stigma-related and other theoretically relevant variables and the primary outcome, PrEP initiation intention. PrEP initiation attitude, norm and behavioral control belief were significantly correlated with the outcome at p.<01. Women’s PrEP stigma was associated at p≤.10, whereas HIV stigma was not significantly correlated with PrEP initiation intention. Table 2 reports unadjusted and adjusted models. In unadjusted models, PrEP initiation intention was positively associated with Women’s PrEP stigma (p<.08) and all three theoretically-relevant variables: PrEP initiation attitude (p<.01), norm (p<.01), and behavioral control belief (p<.01). In the first adjusted model (Model 2), PrEP initiation intention was positively associated with Women’s PrEP stigma (p=.02) and the theoretically-relevant variables PrEP initiation attitude (p<.01) and behavioral control belief (p<.01), but not initiation norm. In the second adjusted model (Model 3), adjusting for theoretically-relevant variables and age and education, participants who scored higher on Women’s PrEP stigma reported significantly weaker PrEP intention (p=.01) (Table 2)

Table 1:

Correlations among PrEP Initiation Intention, Women’s PrEP Stigma, HIV Stigma and other Theoretically Relevant Variables, Just4Us, 2017–2018.

Correlates PrEP Initiation Attitude PrEP Initiation Norm PrEP Initiation Control Belief Women’s PrEP Stigma HIV Stigma PrEP Initiation Intention
PrEP Initiation Attitude r = 1
N=132		 r = 0.52
p <.01
N=126		 r = 0.55
p <.01
N=132		 r = −0.05
p=.57
N=130		 r = 0.06
p=.50
N=128		 r = 0.54
p <.01
N=120
PrEP Initiation Norm r = 1
N=147		 r = 0.66
p <.01
N=147		 r = −0.16
p=.06
N=145		 r = 0.16
p=.05
N=144		 r = 0.48
p <.01
N=129
PrEP Initiation Control Belief r = 1
N=156		 r = −0.08
p=0.31
N=153		 r = 0.19
p=.02
N=152		 r = 0.45
p <.01
N=135
PrEP Stigma r = 1
N=157		 r = 0.17
p=.04
N=153		 r = −0.14
p=.10
N=134
HIV Stigma r = 1
N=155		 r = 0.13
p=.14
N=133
PrEP Initiation Intention r = 1
N=135
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Table 2:

Unadjusted and adjusted multinomial logistic regression models of Women’s PrEP Stigma and PrEP Uptake Intention, Just4Us, 2017–2018.

Correlates Model 1 Unadjusted
 Model 2 Adjusted†
 Model 3 Adjusted*
RR, (95% CI) p value RR, (95% CI) p value RR, (95% CI) p value
PrEP Initiation Attitude 7.59 (4.06, 14.16) <.01 5.26 (2.24, 12.37) .01 1.58 (1.26, 1.98) <.01
PrEP Initiation Norm 3.89 (2.44, 6.21) <.01 1.16 (0.48, 2.82) .74 1.01 (0.80, 1.28) .91
PrEP Initiation Control Belief 5.46 (3.07, 9.7) <.01 1.4 (1.07, 1.83) .01 1.39 (1.06, 1.84) .02
Women’s PrEP Stigma 0.67 (0.43, 1.04) .08 0.81 (0.68, 0.97) .02 0.79 (0.66,0.94) .01
HIV Stigma 1.48 (0.89, 2.44) .13
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†

Adjusts for theoretically relevant variables associated with the outcome at p≤.10 in unadjusted models.

*

Adjusts for theoretically relevant variables associated with the outcome at p≤.10 in unadjusted models, as well as age and education.

Discussion & Conclusion

PrEP stigma is emerging as an important barrier to PrEP uptake among MSM (Calabrese; & Underhill, 2015; Golub, 2018), but there is little data on its role among women. Anticipated PrEP stigma may be an important factor to consider regarding PrEP uptake among women (Goparaju et al., 2017). This study makes a key contribution to the literature by highlighting the role of anticipated PrEP stigma in intention to initiate PrEP in the next three months among women at elevated risk for acquiring HIV. One prior study identified an association between PrEP stigma and intention to start PrEP among a sample of women attending reproductive health clinics, although some may not have been eligible for PrEP (Calabrese et al., 2018). Our study also found perceived HIV stigma was not associated with PrEP initiation intention in this sample, suggesting that stigma as a barrier may be specific to the focal behavior, such as taking PrEP or being labeled as HIV-positive. That the inclusion of the Women’s PrEP Stigma Scale in the model eliminated the statistical significance of the association between PrEP initiation norm and the outcome, initiation intention, suggests that stigma concerns may outweigh expected positive or negative perceptions of approval/support from people important to potential female PrEP users. Further, our results suggest it is important to model stigmas related to HIV and PrEP independently to characterize their specific relationships with PrEP-related cognitions, affects and behaviors. This information is critical to the design of PrEP uptake interventions for women at elevated risk for acquiring HIV.

This study has several limitations that are important to note. First, our study is limited to self-report data, which is subject to socially desirable responding, although this concern is mitigated to some degree by the use of computer-assisted self-interviewing for most participants. Second, the outcome is intention to start PrEP in the next 3 months rather than actual PrEP uptake behavior, which is the focus of the intervention. Given that so few women were actually taking PrEP when we conducted this research, it was not possible to study actual PrEP use behavior among women. However, intention is theoretically related to actual behavior and there is significant empirical support for the role of intention as an appropriate proxy for a range of sexual health behaviors (M. Fishbein & Ajzen, 2010). A strength of our approach is the limited timeframe around initiation intention (the next 3 months), which makes this outcome more specific to a near-term behavior. Due to the size of the sample, we focused our analysis on modeling PrEP and HIV stigma alongside the core components of the reasoned action model, but were not able to model effect modification or a fuller range of factors that could theoretically influence PrEP initiation intention among women. Despite this, given the sparse data on stigma-related correlates of PrEP initiation intention among at-risk women, the analysis makes an important contribution. Finally, our study was limited to two cities in the Northeastern U.S., however both urban areas have significant HIV epidemics and all women enrolled were eligible for PrEP.

Our findings indicate the importance of including Women’s PrEP stigma as well as PrEP attitudes and PrEP initiation control belief in social cognitive interventions to increase PrEP uptake among women at elevated risk for acquiring HIV in the U.S. A strength of our analysis is that that our measure of PrEP stigma is a scale developed specifically for women that includes an item of particular sociohistorical importance to people of color, low income women, and other marginalized groups of women (i.e. “people will think I am being experimented on”). In the focus group study conducted by Goparaju (2017), predominately among women of color, potential lack of social support from others (e.g. family members, partners) was identified as a common concern (Goparaju et al., 2017). Our results offer support for the design of behavioral interventions that specifically address PrEP stigma among women. Goparaju and colleagues (2017) found that women indicated they could overcome the barrier of anticipated stigma related to perceived disapproval (Goparaju et al., 2017). Thus, interventions could increase perceived behavioral control belief by providing options for assessing and managing stigma, which may increase feelings of PrEP uptake self-efficacy. For example, interventions could include skills-based practice for assessing PrEP stigma among social and kin support network members, as well as exploration of strategies to keep their PrEP use confidential, if they decide this is the best option. Collectively these approaches could inform whether and how women discuss PrEP with others and identify the best communication approaches to use within their own social contexts.

Stigma may be a key barrier to PrEP uptake among women, alongside other essential ones such as lack of basic information. To date there has been limited highly visible public messaging about PrEP use for women in the U.S, which contributes to extremely limited awareness of this highly effective biomedical prevention modality. In addition to expanding public messaging to increase PrEP awareness and knowledge among women, the role of PrEP stigma should be addressed through messaging that challenges stereotyped beliefs about women PrEP users. In addition, interventions that integrate stigma reduction, at the individual and community levels, may be crucial to uptake of PrEP among women who are eligible for and would benefit from it. Advancing our understanding of factors that influence PrEP uptake for women is a critical goal given how significantly underutilized PrEP is among women at risk for HIV infection in the U.S. (Smith et al., 2018). Next steps to address this gap are to use these findings and generate further research on the role of PrEP stigma on uptake among women to guide intervention development and to rigorously evaluate these interventions.

Acknowledgments

The authors gratefully acknowledge the support of the staff and volunteers at Just4Us. Most importantly, we thank the study participants who gave their time and effort to this study.

Source of Funding: This research was supported by a grant to Dr. Teitelman from the National Institute of Mental Health (1R34-R34 MH108437-01A1) and Dr. Frye from the National Institute of Allergy and Infectious Disease (1R21 AI122996-01) and Penn Center for AIDS Research P30 AI 045008

Footnotes

Conflict of Interest: All authors declare that they have no conflicts of interest.

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