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Experiences of Pre-Exposure Prophylaxis (PrEP)–Related Stigma among Black MSM PrEP Users in Los Angeles

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Abstract

Black men who have sex with men (BMSM) are disproportionately affected by HIV infection in the USA. Pre-exposure prophylaxis (PrEP) is a proven efficacious biomedical prevention strategy with the potential to alter significantly the course of the epidemic in this population. However, the social stigma attached to PrEP and those who use it may act as a barrier to the uptake and continuation of PrEP among high-risk BMSM. In-depth, semi-structured qualitative interviews were conducted with 26 BMSM PrEP users to explore their experiences of stigma related to their PrEP use. BMSM reported multiple experiences or manifestations of PrEP-related stigma, which included (1) perception that PrEP users engage in elevated sexual risk behaviors; (2) conflicts in relationships attributed to PrEP; (3) experiences of discomfort or judgment from medical providers; (4) assumption that PrEP users are HIV-positive; and (5) gay stigma in families limiting PrEP disclosure. The experiences of stigma typically occur within the context of PrEP disclosure and have significant personal and social consequences for PrEP users. Efforts to address PrEP and other social-stigmas within the Black community may help facilitate PrEP uptake and continuation with BMSM.

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Acknowledgments

We thank the participants for graciously sharing their views and experiences for this study. This work was supported by the National Institute of Mental Health (Grant R21MH107339 and T32MH109205) and by the UCLA Center for HIV Identification, Prevention, and Treatment (CHIPTS) (Grant P30MH058107).

Author information

Authors and Affiliations

  1. Department of Family Medicine, University of California, 10880 Wilshire Blvd., Suite 1800, Los Angeles, CA, 90024, USA

    Ronald A. Brooks, Omar Nieto, Amanda Landrian & Alejandra Cabral

  2. Center for HIV Identification, Prevention, and Treatment Services (CHIPTS), University of California, Los Angeles, USA

    Ronald A. Brooks & Anne Fehrenbacher

  3. Department of Community Health Sciences, Fielding School of Public Health, University of California, Los Angeles, USA

    Amanda Landrian & Alejandra Cabral

  4. Department of Psychiatry and Biobehavioral Sciences, Semel Institute, University of California, Los Angeles, USA

    Anne Fehrenbacher

Authors
  1. Ronald A. Brooks
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Contributions

Ronald A. Brooks is the Principal Investigator of the study and contributed to the study design, data interpretation, and the drafting and revision of the manuscript. Omar Nieto performed data collection, conducted analysis and interpretation of data, and drafted the manuscript. Amanda Landrian, Anne Fehrenbacher, and Alejandra Cabral conducted analysis and interpretation of data and contributed to the drafting and revision of the final manuscript.

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Correspondence to Ronald A. Brooks.

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Appendix. Interview guide

Appendix. Interview guide

BMSM PrEP users

(Interviewer opening prompt to qualitative questions)

I will be asking you questions about how you came to use PrEP for HIV prevention and who you have talked to about your PrEP use and how they have reacted when you told them that you are using PrEP. Do you have any questions before we begin?

(Interviewer responds to any questions and then begins interview)

  1. 1.

    Question No. 1: Opening question: Since you are currently using PrEP, how is it being covered or paid for? (e.g., private insurance, through your medical doctor, through a demonstration project or research study)

Probes:

  • Where are you getting PrEP from?

  • How did you first learn about PrEP?

  • What were your main sources for PrEP information?

  • Were there any persons you talked to about PrEP before deciding to use it?

  • What was the main reason you decided to use PrEP?

  • When did you first start taking PrEP, the approximate date of when you started?

  • What were some of the challenges you faced in accessing PrEP?

  1. 2.

    Question No. 2: Next, what are some of the comments you have heard in the gay community about PrEP?

Probes:

  • What are some of the positive comments you have heard or read about PrEP?

    (Ask if the comment was heard or read)

  • What is the source of these positive comments?

    • Friends/peers, service providers, social media (ask type: Facebooks, Instagram, Twitter), blogs, gay media either online or print

  • What are some of the negative comments you have heard or read about PrEP?

    (Ask if the comment was heard or read)

  • What is the source of these negative comments?

    • Friends/peers, service providers, social media (ask type: Facebooks, Instagram, Twitter), blogs, gay media either online or print

  • What are some of the labels you have heard attached to people who use PrEP?

  • Have any of these labels ever been applied to you? If so, which labels and by whom?

  1. 3.

    Question No. 3: For this next question, I am going to ask you to describe the experiences you have had with friends, family, and sex partners because you are using PrEP.

Probes:

  • Describe the experiences you have had with friends when they found out you were using PrEP

  • Describe the experiences you have had with family when they found out you were using PrEP.

  • Describe the experiences you have had with sexual partners when they found out you were using PrEP.

  1. 4.

    Question No. 4: We’ve talked about the experiences you have had, now let us talk about any situations you have not discussed where you think you might be judged or treated differently because of your PrEP use.

Probes:

  • Do you think you would be judged or treated differently if you disclosed to your close friends that you are using PrEP? If so, how?

  • Do you think you would be judged or treated differently if you disclosed to your family that you are using PrEP? If so, how?

  • Do you think you would be judged or treated differently if you disclosed to your sex partner(s) that you are using PrEP? How might this be different if it was someone who was just a casual sex partner versus a regular sex partner?

  1. 5.

    Question No. 5: In the beginning of the interview, we talked about some of your reasons for starting PrEP. Now I want to focus on how you feel about PrEP. So what are some of your personal feelings about PrEP?

Probes:

  • For example, have you ever felt embarrassed because of your PrEP use? If yes, please describe why you felt embarrassed.

  • Have you ever felt proud that you are using PrEP? If yes, please describe why you felt proud.

  • Have you ever felt guilty because of your PrEP use? If yes, please describe why you felt guilty.

  • Have you felt more responsible for your PrEP use? If yes, please describe why you felt more responsible.

  • Does using PrEP make you feel less anxious? If yes, please describe why you feel less anxious?

  • Does using PrEP ever make you feel like you are doing something wrong? If yes, please describe why you feel like you are doing something wrong.

  1. 6.

    Question No. 6: In order to get a prescription for PrEP, that meant that you first had to go through a medical doctor. As such, I want you to tell me about your experiences with the medical provider that prescribed you PrEP. What was that experience like?

Probes:

  • Did you have a positive experience getting PrEP from your doctor? If yes, please describe what made it positive for you.

  • Was it a difficult experience? If yes, please describe what made it difficult.

  • Was it an embarrassing experience? If yes, please describe what it embarrassing.

  • How did your doctor respond to your request for PrEP?

  • How comfortable were you discussing with your doctor that you have sex with men in order to get PrEP?

  • What have you discussed with your doctor (e.g., the kind of sex you have [bottom or topping], if you have sex with a condom or not, the number of partners you have)?

  • Have your experiences with your doctor changed? If so, how?

  1. 7.

    Question No. 7: Have you ever done anything to hide your use of PrEP?

Probes:

  • Do you ever hide your medications?

  • Do you avoid taking your meds in front of people?

  • Do you avoid talking about your meds with friends and family?

  • Do you avoid telling sex partners?

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Brooks, R.A., Nieto, O., Landrian, A. et al. Experiences of Pre-Exposure Prophylaxis (PrEP)–Related Stigma among Black MSM PrEP Users in Los Angeles. J Urban Health 97, 679–691 (2020). https://doi.org/10.1007/s11524-019-00371-3

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