Skip to main content

Advertisement

SpringerLink
Log in

Why I Quit Pre-Exposure Prophylaxis (PrEP)? A Mixed-Method Study Exploring Reasons for PrEP Discontinuation and Potential Re-initiation Among Gay and Bisexual Men

  • Original Paper
  • Published:
AIDS and Behavior Aims and scope Submit manuscript

Abstract

Literature concerning pre-exposure prophylaxis (PrEP) among gay and bisexual identifying men (GBM) has explored facilitators and barriers to uptake and adherence. Far less reported are the reasons why GBM discontinue PrEP use. A national sample of 1071 GBM completed surveys about PrEP use and discontinuation. Participants who were still taking PrEP the 24-month follow up were compared to those that had stopped. Eighteen percent (n = 31) of GBM who reported ever using PrEP discontinued use. Younger (AOR = 0.96; 95% CI 0.92–1.00), and unemployed (AOR = 4.58; 95% CI 1.43–14.70) GBM were more likely to discontinue PrEP than their counterparts. Those that discontinued provided details on why via a free response question. The most common reasons for discontinuation were lower perceived HIV risk (50%) and cost/insurance (30%). Reasons for potential re-initiation included higher-risk sexual activities and changes to structural related barriers. More research is needed to inform interventions on how GBM can continue taking PrEP during changes to employment that effect insurance coverage and cost.

Resumen

La literatura sobre la Profilaxis Pre-Exposición (PrEP) entre hombres que se auto identifican como gay y bisexuales (HGB) ha explorado facilitadores y barreras al uso y la adherencia a la PrEP. Mucho menos reportadas son las razones por las cuales HGB discontinúan el uso de la PrEP. Una muestra nacional de 1071 HGB completó encuestas sobre el uso y la discontinuación de la PrEP. Participantes que todavía estaban tomando PrEP durante su seguimiento a los 24 meses fueron comparados con aquellos que habían dejado de usarla. HGB más jóvenes (AOR = 0.96; 95% C.I. = 0.92-1.00) y desempleados (AOR = 4.58; 95% C.I. = 1.43-14.70) tuvieron una probabilidad más alta de discontinuar la PrEP que sus homólogos. Aquellos que la discontinuaron proveyeron detalles sobre el por qué a través de un cuestionario de repuesta libre. Las razones más comúnmente citada para la discontinuación fueron: bajo riesgo percibido de contraer VIH (50%) y costo/seguro de salud (30%). Razones para potencialmente reiniciarla incluyeron actividades sexuales de más alto riesgo y cambios en las barreras estructurales relacionadas. Mas investigación es necesaria para informar intervenciones sobre cómo los HGB pueden continuar tomando PrEP durante periodos de cambio en el empleo que afectan la cobertura de salud y su costo.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

References

  1. CDC. Basic statistics—new HIV diagnoses by transmission category. 2015. http://www.cdc.gov/hiv/basics/statistics.html.

  2. CDC. HIV prevention in the United States, new opportunities, new expectations. Center for disease control and prevention. 2015. https://www.cdc.gov/hiv/pdf/policies/cdc-hiv-prevention-bluebook.pdf. Accessed 22 May 2017.

  3. CDC. PrEP: a new tool for HIV prevention. 2012. http://www.cdc.gov/hiv/pdf/prevention_prep_factsheet.pdf. Accessed 16 Aug 2016.

  4. Volk JE, Marcus JL, Phengrasamy T, Blechinger D, Nguyen DP, Follansbee S, et al. No new HIV infections with increasing use of HIV preexposure prophylaxis in a clinical practice setting. Clin Infect Dis. 2015;61(10):1601–3.

    Article  Google Scholar 

  5. Mimiaga MJ, Case P, Johnson CV, Safren SA, Mayer KH. Preexposure antiretroviral prophylaxis attitudes in high-risk Boston area men who report having sex with men: limited knowledge and experience but potential for increased utilization after education. J Acquir Immune Defic Syndr (1999). 2009;50(1):77–83.

    Article  Google Scholar 

  6. Ayala G, Makofane K, Santos G-M, Beck J, Do TD, Hebert P, et al. Access to basic HIV-related services and PrEP acceptability among men who have sex with men worldwide: barriers, facilitators, and implications for combination prevention. J Sex Trans Dis. 2013. https://doi.org/10.1155/2013/953123.

    Article  Google Scholar 

  7. Bauermeister JA, Meanley S, Pingel E, Soler JH, Harper GW. PrEP awareness and perceived barriers among single young men who have sex with men in the United States. Curr HIV Res. 2013;11(7):520.

    Article  CAS  Google Scholar 

  8. Gallagher T, Link L, Ramos M, Bottger E, Aberg J, Daskalakis D. Self-perception of HIV risk and candidacy for pre-exposure prophylaxis among men who have sex with men testing for HIV at commercial sex venues in New York City. LGBT Health. 2014;1(3):218–24.

    Article  Google Scholar 

  9. Galea JT, Kinsler JJ, Salazar X, Lee S-J, Giron M, Sayles JN, et al. Acceptability of pre-exposure prophylaxis as an HIV prevention strategy: barriers and facilitators to pre-exposure prophylaxis uptake among at-risk Peruvian populations. Int J STD AIDS. 2011;22(5):256–62.

    Article  CAS  Google Scholar 

  10. King HL, Keller SB, Giancola MA, Rodriguez DA, Chau JJ, Young JA, et al. Pre-exposure prophylaxis accessibility research and evaluation (PrEPARE Study). AIDS Behav. 2014;18(9):1722–5.

    Article  Google Scholar 

  11. Smith DK, Toledo L, Smith DJ, Adams MA, Rothenberg R. Attitudes and program preferences of African-American urban young adults about pre-exposure prophylaxis (PrEP). AIDS Educ Prev. 2012;24(5):408.

    Article  Google Scholar 

  12. Golub SA, Gamarel KE, Rendina HJ, Surace A, Lelutiu-Weinberger CL. From efficacy to effectiveness: facilitators and barriers to PrEP acceptability and motivations for adherence among MSM and transgender women in New York City. AIDS patient care STDs. 2013;27(4):248–54.

    Article  Google Scholar 

  13. Grov C, Whitfield TH, Rendina HJ, Ventuneac A, Parsons JT. Willingness to take PrEP and potential for risk compensation among highly sexually active gay and bisexual men. AIDS Behav. 2015;19(12):2234–44.

    Article  Google Scholar 

  14. Mustanski B, Johnson AK, Garofalo R, Ryan D, Birkett M. Perceived likelihood of using HIV pre-exposure prophylaxis medications among young men who have sex with men. AIDS Behav. 2013;17(6):2173–9.

    Article  Google Scholar 

  15. Parsons JT, Rendina HJ, Lassiter JM, Whitfield THF, Starks TJ, Grov C. Uptake of HIV pre-exposure prophylaxis (PrEP) in a national cohort of gay and bisexual men in the United States: the motivational PrEP cascade. J Acquir Immune Defic Syndr. 2017;74(3):285–92.

    Article  Google Scholar 

  16. Whitfield THF, Rendina HJ, Grov C, Parsons JT. Why i quit: a mixed methods examination of the reasons gay and bisexual men give for stopping a PrEP regimen. International Association of Providers and AIDS Care; 5/9/16; Fort Lauderdale, Florida 2016.

  17. Copen CE, Chandra A, Febo-Vazquez I. Sexual behavior, sexual attraction, and sexual orientation among adults aged 18–44 in the United States: data from the 2011–2013 national survey of family growth. Nat Health Stat Rep. 2016;88:1–14.

    Google Scholar 

  18. Bureau USC. 2015 American Community Survey 1-Year Estimates. 2015. https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_15_1YR_S0101&prodType=table. Accessed 22 May 2017.

  19. O’Neal R. CROI 2013: iPrEx Update—A Q&A with Dr. Robert Grant. 2013. http://betablog.org/iprex-update-with-robert-grant/. Accessed 19 May 2017.

  20. Elsesser SA, Oldenburg CE, Biello KB, Mimiaga MJ, Safren SA, Egan JE, et al. Seasons of risk: anticipated behavior on vacation and interest in episodic antiretroviral Pre-exposure Prophylaxis (PrEP) Among a Large National Sample of US Men Who have Sex with Men (MSM). AIDS Behav. 2016;20(7):1400–7.

    Article  Google Scholar 

  21. Baeten JM, Haberer JE, Liu AY, Sista N. Pre-exposure prophylaxis for HIV prevention: where have we been and where are we going? J Acquir Immune Defic Syndr (1999). 2013;63(0 2):S122.

    Article  Google Scholar 

  22. 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 AIDS (London, England). 2015;29(11):1277.

    Article  Google Scholar 

  23. Hojilla JC, Koester KA, Cohen SE, Buchbinder S, Ladzekpo D, Matheson T, et al. Sexual behavior, risk compensation, and HIV prevention strategies among participants in the San Francisco PrEP demonstration project: a qualitative analysis of counseling notes. AIDS Behav. 2016;20(7):1461–9.

    Article  Google Scholar 

  24. Holloway IW, Dougherty R, Gildner J, Beougher SC, Pulsipher C, Montoya JA, et al. Brief report: prEP uptake, adherence, and discontinuation among California YMSM using geosocial networking applications. JAIDS J Acquir Immune Defici Syndr. 2017;74(1):15–20.

    Article  Google Scholar 

  25. Golub SA, Starks TJ, Payton G, Parsons JT. The critical role of intimacy in the sexual risk behaviors of gay and bisexual men. AIDS Behav. 2012;16(3):626–32.

    Article  Google Scholar 

  26. Golub SA, Kowalczyk W, Weinberger CL, Parsons JT. Preexposure prophylaxis and predicted condom use among high-risk men who have sex with men. J Acquir Immune Defic Syndr (1999). 2010;54(5):548.

    Article  Google Scholar 

  27. Holt M, Murphy DA, Callander D, Ellard J, Rosengarten M, Kippax SC, et al. Willingness to use HIV pre-exposure prophylaxis and the likelihood of decreased condom use are both associated with unprotected anal intercourse and the perceived likelihood of becoming HIV positive among Australian gay and bisexual men. Sex Trans Infect. 2012;88(4):258–63.

    Article  Google Scholar 

  28. Grov C, Cain D, Whitfield TH, Rendina HJ, Pawson M, Ventuneac A, et al. Recruiting a U.S. national sample of HIV-negative gay and bisexual men to complete at-home self-administered HIV/STI testing and surveys: challenges and opportunities. Sex Res Soc Policy. 2016;13(1):1–21.

    Article  Google Scholar 

  29. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res psychol. 2006;3(2):77–101.

    Article  Google Scholar 

  30. O’Cathain A, Thomas KJ. “ Any other comments?” Open questions on questionnaires–a bane or a bonus to research? BMC Med Res Methodol. 2004;4(1):25.

    Article  Google Scholar 

  31. CDC. HIV among gay and bisexual men. 2017. https://www.cdc.gov/hiv/group/msm/index.html. Accessed 25 Nov 2017.

  32. Parsons JT, Rendina HJ, Grov C, Ventuneac A, Mustanski B. Accuracy of highly sexually active gay and bisexual men’s predictions of their daily likelihood of anal sex and its relevance for intermittent event-driven HIV pre-exposure prophylaxis. J Acquir Immune Defic Syndr (1999). 2015;68(4):449.

    Article  Google Scholar 

  33. Molina J-M, Capitant C, Spire B, Pialoux G, Chidiac C, Charreau I, et al., editors. On demand PrEP with oral TDF-FTC in MSM: results of the ANRS Ipergay trial. Conference on retroviruses and opportunistic infections; 2015.

  34. Parsons JT, Rendina HJ, Whitfield TH, Grov C. Familiarity with and preferences for oral and long-acting injectable HIV pre-exposure prophylaxis (PrEP) in a national sample of gay and bisexual men in the US. AIDS Behav. 2016;20:1–10.

    Google Scholar 

  35. Roberts ST, Heffron R, Ngure K, Celum C, Kurth A, Curran K, et al. Preferences for daily or intermittent pre-exposure prophylaxis regimens and ability to anticipate sex among HIV uninfected members of Kenyan HIV serodiscordant couples. AIDS Behav. 2014;18(9):1701–11.

    Article  Google Scholar 

  36. Greene GJ, Swann G, Fought AJ, Carballo-Diéguez A, Hope TJ, Kiser PF, et al. Preferences for long-acting pre-exposure prophylaxis (PrEP), daily oral prep, or condoms for HIV prevention among us men who have sex with men. AIDS Behav. 2017;21(5):1336–49.

    Article  Google Scholar 

  37. Meyers K, Rodriguez K, Moeller RW, Gratch I, Markowitz M, Halkitis PN. High interest in a long-acting injectable formulation of pre-exposure prophylaxis for HIV in young men who have sex with men in NYC: a P18 cohort substudy. PLoS ONE. 2014;9(12):e114700.

    Article  Google Scholar 

  38. Meyers K, Rodriguez K, Brill AL, Wu Y, La Mar M, Dunbar D, et al. Lessons for patient education around long-acting injectable PrEP: findings from a mixed-method study of phase II trial participants. AIDS Behav. 2017. https://doi.org/10.1007/s10461-017-1871-x.

    Article  Google Scholar 

  39. John SA, Whitfield TH, Rendina HJ, Parsons JT, Grov C. Will gay and bisexual men taking oral pre-exposure prophylaxis (PrEP) switch to long-acting injectable PrEP Should It become available? AIDS Behav. 2017. https://doi.org/10.1007/s10461-017-1907-2.

    Article  PubMed  Google Scholar 

  40. CDC. HIV Among Youth. 2017. https://www.cdc.gov/hiv/group/age/youth/index.html. Accessed 25 May 2017.

  41. Foundation SFA. The Questions About PrEP. 2015. https://men.prepfacts.org/the-questions/. Accessed 25 Nov 2017.

  42. Chapman S. Getting PrEP with or without Insurance. plushcare.com; 2017. https://www.plushcare.com/blog/getting-prep-without-insurance-or-uninsured/. Accessed 25 Nov 2017.

  43. Patel RR, Mena L, Nunn A, McBride T, Harrison LC, Oldenburg CE, et al. Impact of insurance coverage on utilization of pre-exposure prophylaxis for HIV prevention. PLoS ONE. 2017;12(5):e0178737.

    Article  Google Scholar 

  44. Meyer IH. Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychol Bull. 2003;129(5):674.

    Article  Google Scholar 

  45. 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. Under Review.

Download references

Acknowledgements

One Thousand Strong study was funded by a research Grant from the National Institute on Drug Abuse (R01-DA036466; Jeffrey T. Parsons & Christian Grov, MPIs). H. Jonathon Rendina was supported by a Career Development Award from the National Institute on Drug Abuse (K01-DA039030; H. Jonathon Rendina, PI). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The authors would like to acknowledge the contributions of the other members of the One Thousand Strong Study Team (Ana Ventuneac, Demetria Cain, Mark Pawson, Ruben Jimenez, Chloe Mirzayi, Brett Millar, Raymond Moody, and Steve John) and other staff from the Center for HIV/AIDS Educational Studies and Training (Chris Hietikko, Andrew Cortopassi, Brian Salfas, Doug Keeler, Chris Murphy, Carlos Ponton, and Paula Bertone). We would also like to thank the staff at Community Marketing Inc. (David Paisley, Heather Torch, and Thomas Roth). Finally, we thank Jeffrey Schulden at NIDA, the anonymous reviewers of this manuscript, and all of our participants in the One Thousand Strong study.

Funding

Funding support was provided by the National Institute of Drug Abuse (R01-DA036466; PIs: Parsons & Grov). H. Jonathon Rendina was supported, in part, by a National Institute on Drug Abuse Career Development Award (K01-DA039030).

Author information

Authors and Affiliations

  1. Center for HIV/AIDS Educational Studies & Training, Hunter College of the City University of New York (CUNY), 695 Park Ave., New York, NY, 10065, USA

    Thomas H. F. Whitfield, Steven A. John, H. Jonathon Rendina & Jeffrey T. Parsons

  2. Health Psychology and Clinical Sciences Doctoral Program, The Graduate Center of the City University of New York (CUNY), New York, NY, USA

    Thomas H. F. Whitfield, H. Jonathon Rendina & Jeffrey T. Parsons

  3. Department of Psychology, Hunter College of the City University of New York (CUNY), New York, NY, USA

    H. Jonathon Rendina & Jeffrey T. Parsons

  4. CUNY Graduate School of Public Health and Health Policy, New York, NY, USA

    Christian Grov

Authors
  1. Thomas H. F. Whitfield
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Steven A. John
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. H. Jonathon Rendina
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Christian Grov
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Jeffrey T. Parsons
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Jeffrey T. Parsons.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Whitfield, T.H.F., John, S.A., Rendina, H.J. et al. Why I Quit Pre-Exposure Prophylaxis (PrEP)? A Mixed-Method Study Exploring Reasons for PrEP Discontinuation and Potential Re-initiation Among Gay and Bisexual Men. AIDS Behav 22, 3566–3575 (2018). https://doi.org/10.1007/s10461-018-2045-1

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10461-018-2045-1

Keywords

Palabras clave

Search

Navigation