Skip to main content

Table 5 Summary of recent data indicating that social stigma is a barrier to PrEP uptake among individuals at risk of HIV

From: Barriers to the Wider Use of Pre-exposure Prophylaxis in the United States: A Narrative Review

Demographic variable Study design Summary of data References
Sexual orientation Interview of HIV-negative MSM who use PrEP (N = 43) PrEP stigma was experienced as rejection by potential/actual partners, being subject to stereotypes of promiscuity/chemsex, and labeling (both the user and the medication) [51]
Interview of incarcerated MSM at the Rhode Island Department of Corrections (N = 26) Post-release barriers to PrEP uptake and adherence included anticipated partner or family disapproval [46]
Interview of Black MSM PrEP users in Los Angeles (N = 26) Participants reported multiple experiences of PrEP-related stigma, including the perception of elevated sexual risk behaviors; conflicts in relationships; assumptions that users are HIV-positive; and gay stigma in families [174]
Focus groups of MSM in New York City (N = 24) Participants thought that stigma against PrEP users was declining as PrEP became more common, but stigma remained for those not using condoms and in relation to suspicions of infidelity with PrEP use [175]
Focus groups of young men and TGM and TGW who have sex with men in Boston, Chicago, and Los Angeles (N = 36) Stigma and marginalization were highlighted as barriers to PrEP use [176]
Focus groups of gay, bisexual, and other MSM in Boston, Massachusetts and Jackson, Mississippi (N = 35) Participants from Jackson, in particular, expressed fear that information would be disclosed to family and friends. One person suggested that stigma related to gay sex might be a barrier to people seeking PrEP [167]
Interview of MSM in the USA (N = 3932) and Sub-Saharan Africa (N = 4063) Individuals in the USA were more likely to avoid healthcare support/intervention if they had not disclosed their sexual behavior to their family [177]
Interview of current and potential PrEP users in Alabama (N = 44), the majority of whom were gay or lesbian (66%)a Sexuality-related stigma was raised as a perceived barrier to PrEP access [76]
Gender Focus groups of TGW living in New York City (N = 18) Stigma and exclusion of TGW from advertising were identified as barriers to PrEP use [50]
Online survey of HIV-negative, heterosexually active PrEP-inexperienced women in Connecticut who were planning parenthood (N = 597) PrEP-user stereotypes were commonly experienced, with many believing others would regard them as promiscuous (37%), HIV-positive (32%), bad (14%), or gay (11%). Thirty percent reported they would feel ashamed to disclose PrEP use; many expected disapproval from family (36%), sexual partners (34%), and friends (25%) [178]
Group discussions among cis and TGW of color at the “Empowering Women’s Health Summit” in 2018 (N = 279) Participants identified cultural gender norms and roles as an overarching barrier to PrEP use; other barriers included lack of effective communication with healthcare providers, structural racism, and stigmatization [179]
Race/ethnicity Survey of HIV-negative cis women who completed enrollment for a PrEP clinical trial in Southern California (N = 136) Black women were less likely to know if their partner was HIV-positive, compared with White and Latina women [180]
History of substance abuse Interview of HIV-negative PWID in Boston and Providence (N = 33) HIV-related stigma within social networks was identified as a barrier to PrEP use [84]
Survey of PWID recruited to a mobile syringe exchange program in New Jersey (N = 138) Participants reported substantial barriers to PrEP, including feeling embarrassed (45%) or anxious (52%) about taking PrEP, and nondisclosure to partners (51%) [78]
Age Survey of young (age 18–30 years) HIV-positive minorities in South Texas (N = 92) A total of 43% of participants reported that they would be embarrassed to ask for PrEP [166]
Survey and interview of young adults experiencing homelessness in Houston (N = 30) or Los Angeles (N = 15) Identified barriers to PrEP use included perceived stigma of PrEP use [165]
Interview of physicians providing care to 13–21-year-old adolescents (N = 38) Participants reported lack of acceptability to parents as a barrier to PrEP use [31]
Survey of young MSM in California using geosocial networking apps (N = 687) Stigma was identified as a factor in low willingness to take PrEP, e.g., concern around family members or friends finding out about PrEP use [181]
Survey of PrEP-indicated emerging MSM aged 18–25 years (N = 194) Only approx. 20% of participants reported moderate or high comfort with parent sex communication. Odds of current PrEP use increased with age, parent sex communication, and increased family disclosure of sexual identity. Participants who reported being in a relationship were less likely to be using PrEP than single participants [182]
Survey of MSM aged 18–25 years (N = 236) Participants were less likely to use PrEP if they were in a relationship [183]
Online surveys and focus groups of adolescents (N = 56), most of whom were cis male (95%) and identified as gay (79%) A frequently reported barrier was homophobia in the form of disapproving parents and healthcare providers [74]
Online focus groups of HIV-negative sexual and gender minority adolescents (aged 14–18 years) recruited from across the USA Participants asked a variety of questions about PrEP, including how or where to get PrEP without parents finding out [184]
Geographic locationa Focus groups of individuals at high risk of HIV in the Deep South (N = 54), primarily Black MSM and women participating in substance use treatment Participants described substantial levels of stigma, including HIV-related stigma and discrimination from family, church, and community [185]
  1. cis cisgender, HIV human immunodeficiency virus, MSM men who have sex with men, PrEP pre-exposure prophylaxis, PWID people who inject drugs, TGM transgender men, TGW transgender women
  2. aPlease see study of current and potential PrEP users in Alabama “Sexual orientation” category, also applicable here [76]