Barriers and Facilitators of PrEP Adherence for Young Men and Transgender Women of Color


We aimed to discover barriers and facilitators of HIV pre-exposure prophylaxis (PrEP) adherence in young men and transgender women of color who have sex with men (YMSM/TW). Short-term and sustained adherence were measured by urine tenofovir concentration and pharmacy refills, respectively. Optimal adherence was defined as having both urine tenofovir concentration consistent with dose ingestion within 48 h and pharmacy refills consistent with ≥ 4 doses per week use. Participants completed semi-structured interviews exploring adherence barriers and facilitators. Participants (n = 31) were primarily African-American (68%), mean age 22 years (SD: 1.8), and 48% had optimal adherence. Adherence barriers included stigma, health systems inaccessibility, side effects, competing stressors, and low HIV risk perception. Facilitators included social support, health system accessibility, reminders/routines, high HIV risk perception, and personal agency. Our findings identify targets for intervention to improve PrEP adherence in these populations, including augmenting health activation and improving accuracy of HIV risk perception.


Nuestro objetivo fue descubrir los obstáculos y facilitadores de la adherencia al profilaxis de pre-exposición al VIH (PrEP) en hombres jóvenes y mujeres transgénero que tienen sexo con hombres (YMSM/TW) y quienes son minorías étnicas. La adherencia, a corto plazo y sostenida, se midió mediante la concentración de tenofovir en la orina y las prescripciones completadas en la farmacia. La adherencia óptima se definió basado en una concentración de tenofovir en la orina consistente con el uso de PrEP en las ultimas 48 horas y prescripciones completadas en la farmacia consistentes con ≥ 4 dosis por semana. Los participantes completaron entrevistas semiestructuradas que exploraron los obstáculos y facilitadores de la adherencia. Los participantes (n = 31) fueron principalmente afroamericanos (68%), con una edad media de 22 años (SD: 1.8) y 48% obtuvieron adherencia óptima. Participantes discutieron varios obstáculos, incluyendo el estigma, acceso limitado a los sistemas de salud, los efectos secundarios asociados a PrEP, competencia con otras prioridades, y la baja percepción del riesgo de VIH. Los facilitadores incluyeron apoyo social, acceso al sistema de salud, recordatorios/rutinas, alta percepción de riesgo de VIH y agencia personal. Nuestros hallazgos identifican oportunidades para mejorar la adherencia al PrEP en estas poblaciones a través de intervenciones, incluyendo la activación de salud y cambios en la percepción del riesgo al VIH en estas comunidades.

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  1. 1.

    Marcus JL, Buisker T, Horvath T, Amico KR, Fuchs JD, Buchbinder SP, et al. Helping our patients take HIV pre-exposure prophylaxis (PrEP): a systematic review of adherence interventions. HIV Med. 2014;15(7):385–95.

    CAS  Article  Google Scholar 

  2. 2.

    McCormack S, Dunn DT, Desai M, Dolling DI, Gafos M, Gilson R, et al. Pre-exposure prophylaxis to prevent the acquisition of HIV-1 infection (PROUD): effectiveness results from the pilot phase of a pragmatic open-label randomised trial. Lancet. 2016;387(10013):53–60.

    Article  Google Scholar 

  3. 3.

    Thigpen MC, Kebaabetswe PM, Paxton LA, Smith DK, Rose CE, Segolodi TM, et al. Antiretroviral preexposure prophylaxis for heterosexual HIV transmission in Botswana. N Engl J Med. 2012;367(5):423–34.

    CAS  Article  Google Scholar 

  4. 4.

    Karim SS, Kashuba AD, Werner L, Karim QA. Drug concentrations after topical and oral antiretroviral pre-exposure prophylaxis: implications for HIV prevention in women. Lancet. 2011;378(9787):279–81.

    Article  Google Scholar 

  5. 5.

    Amico KR. The key role of adherence for the effectiveness of antiretroviral-based prevention: state of the science and implications for the Asia-Pacific region. Sex Health. 2014;11(2):155–65.

    Article  Google Scholar 

  6. 6.

    Van Damme L, Corneli A. Antiretroviral preexposure prophylaxis for HIV prevention. N Engl J Med. 2013;368(1):84.

    Article  Google Scholar 

  7. 7.

    Haberer JE, Bangsberg DR, Baeten JM, Curran K, Koechlin F, Amico KR, et al. Defining success with HIV pre-exposure prophylaxis: a prevention-effective adherence paradigm. AIDS. 2015;29(11):1277–85.

    Article  Google Scholar 

  8. 8.

    Van Damme L, Corneli A, Ahmed K, Agot K, Lombaard J, Kapiga S, et al. Preexposure prophylaxis for HIV infection among African women. N Engl J Med. 2012;367(5):411–22.

    Article  Google Scholar 

  9. 9.

    Amico KR, Stirratt MJ. Adherence to preexposure prophylaxis: current, emerging, and anticipated bases of evidence. Clin Infect Dis. 2014;59(Suppl 1):S55–60.

    Article  Google Scholar 

  10. 10.

    Hosek SG, Landovitz RJ, Kapogiannis B, Siberry GK, Rudy B, Rutledge B, et al. Safety and feasibility of antiretroviral preexposure prophylaxis for adolescent men who have sex with men aged 15 to 17 years in the United States. JAMA Pediatr. 2017;171(11):1063–71.

    Article  Google Scholar 

  11. 11.

    Landovitz RJ, Beymer M, Kofron R, Amico KR, Psaros C, Bushman L, et al. Plasma tenofovir-levels to support adherence to TDF/FTC pre-exposure prophylaxis for hiv prevention in MSM in Los Angeles, California. J Acquir Immune Defic Syndr. 2017;76(5):501–11.

    CAS  Article  Google Scholar 

  12. 12.

    Hojilla JC, Vlahov D, Crouch PC, Dawson-Rose C, Freeborn K, Carrico A. HIV pre-exposure prophylaxis (PrEP) uptake and retention among men who have sex with men in a community-based sexual health clinic. AIDS Behav. 2018;22(4):1096–9.

    Article  Google Scholar 

  13. 13.

    Gilmore HJ, Liu A, Koester KA, Amico KR, McMahan V, Goicochea P, et al. Participant experiences and facilitators and barriers to pill use among men who have sex with men in the iPrEx pre-exposure prophylaxis trial in San Francisco. AIDS Patient Care STDS. 2013;27(10):560–6.

    Article  Google Scholar 

  14. 14.

    Tangmunkongvorakul A, Chariyalertsak S, Amico KR, Saokhieo P, Wannalak V, Sangangamsakun T, et al. Facilitators and barriers to medication adherence in an HIV prevention study among men who have sex with men in the iPrEx study in Chiang Mai, Thailand. AIDS Care. 2013;25(8):961–7.

    Article  Google Scholar 

  15. 15.

    Storholm ED, Volk JE, Marcus JL, Silverberg MJ, Satre DD. Risk perception, sexual behaviors, and PrEP adherence among substance-using men who have sex with men: a qualitative study. Prev Sci. 2017;18(6):737–47.

    Article  Google Scholar 

  16. 16.

    Arnold T, Brinkley-Rubinstein L, Chan PA, Perez-Brumer A, Bologna ES, Beauchamps L, et al. Social, structural, behavioral and clinical factors influencing retention in pre-exposure prophylaxis (PrEP) care in Mississippi. PLoS ONE. 2017;12(2):e0172354.

    Article  Google Scholar 

  17. 17.

    Brooks RA, Landrian A, Nieto O, Fehrenbacher A. Experiences of anticipated and enacted pre-exposure prophylaxis (PrEP) stigma among latino MSM in Los Angeles. AIDS Behav. 2019.

    Article  PubMed  Google Scholar 

  18. 18.

    Thompson MA, Mugavero MJ, Amico KR, Cargill VA, Chang LW, Gross R, et al. Guidelines for improving entry into and retention in care and antiretroviral adherence for persons with HIV: evidence-based recommendations from an International Association of Physicians in AIDS Care panel. Ann Intern Med. 2012;156(11):817–33 W-284, W-5, W-6, W-7, W-8, W-9, W-90, W-91, W-92, W-93, W-94.

    Article  Google Scholar 

  19. 19.

    Yehia BR, Fleishman JA, Agwu AL, Metlay JP, Berry SA, Gebo KA, et al. Health insurance coverage for persons in HIV care, 2006–2012. J Acquir Immune Defic Syndr. 2014;67(1):102–6.

    Article  Google Scholar 

  20. 20.

    Gross IM, Hosek S, Richards MH, Fernandez MI. Predictors and profiles of antiretroviral therapy adherence among African American adolescents and young adult males living with HIV. AIDS Patient Care STDS. 2016;30(7):324–38.

    Article  Google Scholar 

  21. 21.

    Wood S, Ratcliffe S, Gowda C, Lee S, Dowshen NL, Gross R. Impact of insurance coverage on HIV transmission potential among antiretroviral therapy-treated youth living with HIV. AIDS. 2018;32(7):895–902.

    PubMed  PubMed Central  Google Scholar 

  22. 22.

    Wood SM, Lee S, Barg FK, Castillo M, Dowshen N. Young transgender women’s attitudes toward HIV pre-exposure prophylaxis. J Adolesc Health. 2017;60(5):549–55.

    Article  Google Scholar 

  23. 23.

    Haberer JE. Current concepts for PrEP adherence in the PrEP revolution: from clinical trials to routine practice. Curr Opin HIV AIDS. 2016;11(1):10–7.

    Article  Google Scholar 

  24. 24.

    Fishbein M. The role of theory in HIV prevention. AIDS Care. 2000;12(3):273–8.

    CAS  Article  Google Scholar 

  25. 25.

    Koenig HC, Mounzer K, Daughtridge GW, Sloan CE, Lalley-Chareczko L, Moorthy GS, et al. Urine assay for tenofovir to monitor adherence in real time to tenofovir disoproxil fumarate/emtricitabine as pre-exposure prophylaxis. HIV Med. 2017;18(6):412–8.

    CAS  Article  Google Scholar 

  26. 26.

    Britten N. Qualitative interviews in medical research. BMJ. 1995;311(6999):251–3.

    CAS  Article  Google Scholar 

  27. 27.

    Mason M. Sample size and saturation in PhD studies using qualitative interviews. Forum Qual Soc Res. 2010;11(3).

  28. 28.

    Glaser B. Theoretical sensitivity: advances in the methodology of grounded theory. Mill Valley: Sociology; 1978.

    Google Scholar 

  29. 29.

    Krieger N, Smith K, Naishadham D, Hartman C, Barbeau EM. Experiences of discrimination: validity and reliability of a self-report measure for population health research on racism and health. Soc Sci Med. 2005;61(7):1576–96.

    Article  Google Scholar 

  30. 30.

    Williams DR, Yan Y, Jackson JS, Anderson NB. Racial differences in physical and mental health: socio-economic status, stress and discrimination. J Health Psychol. 1997;2(3):335–51.

    CAS  Article  Google Scholar 

  31. 31.

    Lalley-Chareczko L, Clark D, Conyngham SC, Zuppa A, Moorthy G, Mounzer K, et al. Delivery of TDF/FTC for pre-exposure prophylaxis to prevent HIV-1 acquisition in young adult men who have sex with men and transgender women of color using a urine adherence assay. J Acquir Immune Defic Syndr. 2018;79(2):173–8.

    Article  Google Scholar 

  32. 32.

    Kabore L, Muntner P, Chamot E, Zinski A, Burkholder G, Mugavero MJ. Self-report measures in the assessment of antiretroviral medication adherence: comparison with medication possession ratio and HIV viral load. J Int Assoc Provid AIDS Care. 2015;14(2):156–62.

    Article  Google Scholar 

  33. 33.

    Amico KR, Marcus JL, McMahan V, Liu A, Koester KA, Goicochea P, et al. Study product adherence measurement in the iPrEx placebo-controlled trial: concordance with drug detection. J Acquir Immune Defic Syndr. 2014;66(5):530–7.

    CAS  Article  Google Scholar 

  34. 34.

    Grossberg R, Gross R. Use of pharmacy refill data as a measure of antiretroviral adherence. Curr HIV/AIDS Rep. 2007;4(4):187–91.

    Article  Google Scholar 

  35. 35.

    Grant RM, Anderson PL, McMahan V, Liu A, Amico KR, Mehrotra M, et al. Uptake of pre-exposure prophylaxis, sexual practices, and HIV incidence in men and transgender women who have sex with men: a cohort study. Lancet Infect Dis. 2014;14(9):820–9.

    Article  Google Scholar 

  36. 36.

    Jenness SM, Goodreau SM, Rosenberg E, Beylerian EN, Hoover KW, Smith DK, et al. Impact of the centers for disease control’s HIV preexposure prophylaxis guidelines for men who have sex with men in the United States. J Infect Dis. 2016;214(12):1800–7.

    Article  Google Scholar 

  37. 37.

    Morgan E, Ryan DT, Newcomb ME, Mustanski B. High rate of discontinuation may diminish PrEP coverage among young men who have sex with men. AIDS Behav. 2018;22(11):3645–8.

    Article  Google Scholar 

  38. 38.

    Hosek SG, Rudy B, Landovitz R, Kapogiannis B, Siberry G, Rutledge B, et al. An HIV preexposure prophylaxis demonstration project and safety study for young MSM. J Acquir Immune Defic Syndr. 2017;74(1):21–9.

    Article  Google Scholar 

  39. 39.

    Baker Z, Javanbakht M, Mierzwa S, Pavel C, Lally M, Zimet G, et al. Predictors of over-reporting hiv pre-exposure prophylaxis (PrEP) adherence among young men who have sex with men (YMSM) in self-reported versus biomarker data. AIDS Behav. 2018;22(4):1174–83.

    Article  Google Scholar 

  40. 40.

    Haberer JE, Kidoguchi L, Heffron R, Mugo N, Bukusi E, Katabira E, et al. Alignment of adherence and risk for HIV acquisition in a demonstration project of pre-exposure prophylaxis among HIV serodiscordant couples in Kenya and Uganda: a prospective analysis of prevention-effective adherence. J Int AIDS Soc. 2017;20(1):21842.

    Article  Google Scholar 

  41. 41.

    Lazarus RS, Folkman S. Stress, appraisal, and coping. New York: Springer; 1984.

    Google Scholar 

  42. 42.

    Hibbard JH, Mahoney E. Toward a theory of patient and consumer activation. Patient Educ Couns. 2010;78(3):377–81.

    Article  Google Scholar 

  43. 43.

    Stekler JD, McMahan V, Ballinger L, Viquez L, Swanson F, Stockton J, et al. HIV pre-exposure prophylaxis (PrEP) prescribing through telehealth. J Acquir Immune Defic Syndr. 2018;77(5):e40–2.

    Article  Google Scholar 

  44. 44.

    John SA, Rendina HJ, Grov C, Parsons JT. Home-based pre-exposure prophylaxis (PrEP) services for gay and bisexual men: an opportunity to address barriers to PrEP uptake and persistence. PLoS ONE. 2017;12(12):e0189794.

    Article  Google Scholar 

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Dr. Koenig is an Advisory Board member for Gilead Sciences. No other authors have conflicts of interest to disclose. Funding: Wood: NIMH F32MH111341; P30 AI 045008, Center for AIDS Research Pilot Award; P30 MH 097488, Penn Mental Health AIDS Research Center Pilot Award. Dowshen: NIMH K23MH102128.

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Wood, S., Gross, R., Shea, J.A. et al. Barriers and Facilitators of PrEP Adherence for Young Men and Transgender Women of Color. AIDS Behav 23, 2719–2729 (2019).

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  • HIV prevention
  • Pre-exposure prophylaxis
  • Social support
  • Adherence