Why aren’t more women taking PrEP? Barriers to PrEP and strategies to increase uptake among cisgender and transgender women

Prevention in Focus PiF 2024 Fall

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Pre-exposure prophylaxis (PrEP) is a highly effective method to prevent HIV for people of all genders. Despite its proven effectiveness, the use of PrEP among women, both cisgender (cis) and transgender (trans),* is very low in Canada. While not all women are at risk, those who are at high risk for HIV could benefit from this HIV prevention option. The low uptake of PrEP among women highlights the urgent need to raise awareness of PrEP among women at risk for HIV, to address barriers to access and to tailor prevention programs to better serve the diverse needs of all women, ensuring equitable access to PrEP.

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*Note on language about gender: Trans women are people who were assigned male at birth and have a feminine gender identity and/or gender expression, and cis women are people who were assigned female at birth and identify as women. Studies and public health statistics do not always specify whether or not they include trans women. In this article, we use the terms used in the original sources. Where the term “female” is used, we assume that a majority are cisgender women. 

PrEP is a highly effective method for preventing HIV among women

When it is taken consistently as prescribed, PrEP is a highly effective method to prevent HIV through both sex and injection drug use.1 Two types of PrEP have been studied in cis women: a daily pill and a long-acting injection. Studies have shown that daily oral PrEP with the drugs tenofovir disoproxil fumarate and emtricitabine (TDF + FTC), also known by the brand name Truvada, is effective at preventing HIV in cis women with high adherence to the drugs.2 Although some early studies did not find PrEP to be effective in women, later analyses showed that this was because of low adherence in those studies and that oral PrEP is just as effective for cis women as it is for cis men when it is taken every day.2–4 More recently, injectable PrEP with cabotegravir (also known by the brand name Apretude) has also been shown to be highly effective at preventing HIV among cis women.5

Evidence for the effectiveness of PrEP in trans women comes mostly from large studies of gay, bisexual and other men who have sex with men (gbMSM) that also included trans women.6–8 In these studies, daily PrEP with TDF + FTC (i.e., Truvada) was found to be highly effective at preventing HIV when taken as prescribed.6 In addition, other PrEP options including daily PrEP with tenofovir alafenamide and emtricitabine (TAF + FTC) (i.e., Descovy)7 and injectable PrEP with cabotegravir (i.e., Apretude)8 have also been shown to be effective in studies of gbMSM and trans women. 

Is there a need for PrEP among women in Canada?

Women account for a large proportion of new HIV infections in Canada and could benefit from PrEP as an HIV prevention strategy. According to national estimates, females make up a growing proportion of new HIV infections, at almost a third of new infections in 2020.9 Trans women are not represented in national estimates of infections or diagnoses. However, other studies have found disproportionately high rates of HIV in trans women in Canada.10 

Increasing PrEP use among women at high risk for HIV could help to reduce new HIV infections among women overall. Certain groups of women have disproportionately high rates of HIV, including trans women, Black women, Indigenous women and women who use drugs.11,12 This inequity is due to structural factors such as transphobia, racism, colonialism and criminalization of drug use that lead to stigma, discrimination, violence, housing insecurity, unemployment, inequitable access to health care and more.13 Initiatives that aim to increase PrEP use among women may be most successful at reaching those at the highest risk if they consider systemic factors in addition to a person’s individual risk.

What do we know about PrEP awareness and use among women?

Studies have found that awareness of PrEP is fairly low among women.13–15 A survey of 175 women (cis and trans) in Ontario found that 51% were aware of PrEP, despite half the sample being deemed at high risk for HIV. Most of the women surveyed (71%) believed that they had a low or very low risk of getting HIV, and most (93%) had never been offered PrEP.15 Some research suggests that awareness of PrEP among trans women is higher than among cis women.16,17 Despite low awareness, studies show that many women are interested in taking PrEP if they are told about it.13,14

Although PrEP is highly effective, and there is a need for it among women at high risk for HIV, very few women are taking PrEP. In 2022, only 2% of people using PrEP in Canada were females, according to data from community pharmacies in nine provinces.18 This analysis did not provide data on trans people, but we know from other sources that uptake of PrEP has also been low among trans women.17 A national survey done in 2019 called Trans PULSE Canada included 485 trans women who were HIV negative or did not know their HIV status,17 of whom only five had ever used PrEP and only two were currently using it. 

What are the barriers and facilitators to PrEP uptake in women?

To increase PrEP use among women, it is important to understand the unique barriers reported by women and the factors that can facilitate access to PrEP. Commonly reported barriers to PrEP use among women include:13,14,16,19.20

  • lack of awareness of PrEP 
  • low perceived risk for HIV, including among women who report behaviours that indicate that they may be at risk for HIV through sex or drug use 
  • concerns about safety and side effects of PrEP
  • concerns about drug interactions, including interactions with unregulated drugs and prescription drugs 
  • stigma associated with taking PrEP (e.g., from friends, family or partners)
  • concerns about how to cover the cost of PrEP
  • mistrust in the medical system and/or past negative experiences with healthcare providers
  • structural barriers, such as systemic racism and poverty

Trans women also experience some unique barriers to taking PrEP.16 One commonly reported barrier is concern about possible interactions between hormone therapy medications and PrEP. Research shows that PrEP does not interfere with hormone therapy and that taking hormone therapy does not make PrEP less effective.16 Also, some trans people report feeling that PrEP is for cis gbMSM and that many PrEP providers are not knowledgeable about the unique needs and concerns of trans women.16 

Research has also identified some factors that can facilitate access to PrEP for women. 13,14,16,19.20 These include:

  • information and support that is women centred
  • encouragement to take PrEP by a healthcare provider
  • strong social networks with other women who openly talk about HIV
  • an easy and convenient way to access PrEP
  • integration of PrEP into services that women at risk for HIV are already using (such as needle and syringe programs or healthcare settings that provide gender-affirming care)

A major benefit of PrEP that is often cited in studies of women is increased control over HIV prevention decisions, since a woman can take PrEP without having to negotiate with a sex partner or someone she uses drugs with.13,16 This is a unique benefit of PrEP, particularly for women who may be marginalized in ways that can make it difficult to negotiate condom use or to avoid sharing injecting equipment, such as women who do sex work, women who use drugs and women experiencing intimate partner violence. 

Integrating PrEP into healthcare settings can help to address barriers and reach women at risk

Healthcare providers working in a wide variety of fields can play an important role in educating women about PrEP and can facilitate access for those who are interested. Integrating PrEP education, eligibility screening and provision into services that women are already using may facilitate access. For example, PrEP services can be integrated into sexual and reproductive healthcare settings,21,22,23 harm reduction services24,25 and unique healthcare services for trans women.26 Integrating PrEP into these settings can help to address some of the commonly reported barriers to taking PrEP among women. 

Integrating PrEP education into these settings can help to increase knowledge about PrEP among women who may be at risk for HIV. Routinely discussing PrEP with women can also help to alleviate stigma associated with talking about PrEP and can give women an opportunity to consider their risk for HIV and whether PrEP might be a good option for them.22

Screening for PrEP eligibility often entails asking questions about sexual and drug use behaviours to assess HIV risk. However, it has been argued that screening often focuses too narrowly on individual self-reported behaviours.11,13,27,28 Using a screening process that considers individual behaviours as well as other factors, such as whether someone is part of a community that is disproportionately affected by HIV, could help to reach the women who would benefit most from PrEP.23

Women who decide that they would like to take PrEP may feel most comfortable accessing it from a healthcare provider whom they already know and with whom they have built trust, and who specializes in providing care to the communities disproportionately affected by HIV. For example, trans women may be more likely to access PrEP if they can get it from a provider who is experienced providing care to trans people.20 Similarly, integrating PrEP into harm reduction programs may help to engage women who use drugs in PrEP.23 An initiative in Ottawa that screened people for PrEP eligibility and actively offered PrEP to those who were eligible had success in engaging women in PrEP offered through a safer supply program.23

Recommendations for service providers

Healthcare providers as well as non-clinical service providers can play a role in helping to increase uptake of PrEP among women.

Considerations for providing education and support to women:

  • Educate women about PrEP as a highly effective HIV prevention option. When talking with women within your organization, or through outreach, discuss PrEP and whether it might be a good option for them. Education for women should include all of the highly effective HIV prevention methods, so that they can determine the approach that will work best for them. 
  • Consider other ways to increase awareness of PrEP among women besides in one-on-one conversations (e.g., putting up posters or handing out educational materials). These efforts may be most effective if the information is tailored to women. 
  • When possible, provide support to address broader issues in a person’s life that negatively impact their well-being and can contribute to HIV risk (e.g., support for people experiencing intimate partner violence, unstable housing).
  • Be prepared to discuss the particular concerns that women may have about PrEP, such as side effects and possible interactions with other drugs (including unregulated drugs and prescription drugs). 
  • Recognize that women who are part of the communities most affected by HIV face barriers to accessing healthcare generally, including accessing PrEP. Women should have access to healthcare that is culturally safe, that does not stigmatize drug use and that is sensitive to the unique needs of trans women. Referrals should be made to healthcare providers who demonstrate these competencies. 

Considerations for PrEP prescribers:

  • PrEP providers may benefit from training to increase their competency and confidence prescribing PrEP to women. Those wishing to provide PrEP to trans women should ensure that they are able to answer questions about the specific concerns that trans women may have, such as potential interactions between PrEP and hormone therapies.
  • Healthcare providers who work with women can consider proactively educating women about PrEP, implementing screening practices that could help to identify more women who might benefit from PrEP and offering a convenient pathway to access. 
  • Recognizing that many of the women at highest risk for HIV in Canada are marginalized in healthcare, initiatives aimed at increasing access to PrEP among women should work to address the unique barriers that these communities face to accessing healthcare generally, including PrEP.
  • The availability of PrEP in diverse settings should be increased. Providing PrEP in settings that women at risk for HIV already access may help to increase uptake of PrEP and ongoing use of PrEP among women.

References

  1. Fonner VA, Dalglish SL, Kennedy CE et al. Effectiveness and safety of oral HIV preexposure prophylaxis for all populations. AIDS. 2016 Jul 7;30(12):1973-83.
  2. Marrazzo J, Tao L, Becker M et al. HIV preexposure prophylaxis with emtricitabine and tenofovir disoproxil fumarate among cisgender women. JAMA. 2024 Mar 19;331:930-7.
  3. Moore M, Stansfield S, Donnell DJ et al. Efficacy estimates of oral pre-exposure prophylaxis for HIV prevention in cisgender women with partial adherence. Nature Medicine. 2023 Nov;29(11):2748-52.
  4. Zhang L, Iannuzzi S, Chaturvedula A et al. Model-based predictions of protective HIV pre-exposure prophylaxis adherence levels in cisgender women. Nature Medicine. 2023 Nov;29(11):2753-62.
  5. Delany-Moretlwe S, Hughes JP, Bock P et al. Cabotegravir for the prevention of HIV-1 in women: results from HPTN 084, a phase 3, randomised clinical trial. The Lancet. 2022;399(10337):1779-89.
  6. Deutsch MB, Glidden DV, Sevelius J et al. HIV pre-exposure prophylaxis in transgender women: a subgroup analysis of the iPrEx trial. The Lancet HIV. 2015 Dec 1;2(12):e512-9.
  7. Mayer KH, Molina J-M, Thompson MA et al. Emtricitabine and tenofovir alafenamide vs emtricitabine and tenofovir disoproxil fumarate for HIV pre-exposure prophylaxis (DISCOVER): primary results from a randomised, double-blind, multicentre, active-controlled, phase 3, non-inferiority trial. The Lancet. 2020 Jul;396:239-54.
  8. Landovitz RJ, Donnell D, Clement ME et al. Cabotegravir for HIV prevention in cisgender men and transgender women. New England Journal of Medicine. 2021 Aug 12;385(7):595-608.
  9. Public Health Agency of Canada. Estimates of HIV incidence, prevalence and Canada’s progress on meeting the 90-90-90 HIV targets, 2020. Ottawa: Public Health Agency of Canada; 2022. Available from: https://www.canada.ca/en/public-health/services/publications/diseases-conditions/estimates-hiv-incidence-prevalence-canada-meeting-90-90-90-targets-2020.html
  10. Lacombe-Duncan A, Persad Y, Shokoohi M et al. HIV prevalence among a retrospective clinical cohort of transgender women in Canada: results of the Montreal-Toronto Trans study, collected 2018–2019. International Journal of STD & AIDS. 2023 Dec;34(14):1062-71. 
  11. O'Byrne P, MacPherson P, Orser L et al. PrEP-RN: clinical considerations and protocols for nurse-led PrEP. Journal of the Association of Nurses in AIDS Care. 2019 May 1;30(3):301-11. 
  12. Public Health Agency of Canada. HIV in Canada: 2022 surveillance highlights. Ottawa: Public Health Agency of Canada; 2023. Available from: https://www.canada.ca/en/public-health/services/publications/diseases-conditions/hiv-2022-surveillance-highlights.html
  13. Aaron E, Blum C, Seidman D et al. Optimizing delivery of HIV preexposure prophylaxis for women in the United States. AIDS Patient Care and STDs. 2018 Jan 1;32(1):16-23. 
  14. Conley C, Johnson R, Bond K et al. US Black cisgender women and pre-exposure prophylaxis for human immunodeficiency virus prevention: a scoping review. Women's Health. 2022 Jun;18:17455057221103098. 
  15. Van Uum R, Ebrahimpoor Mashhadi P, Canani F et al. Characterizing cis and trans women’s knowledge of risk of HIV and access to HIV prophylaxis [poster presentation]. In: 33rd Annual Canadian Conference on HIV/AIDS Research, London, Ontario, April 25–28, 2024.
  16. Dang M, Scheim AI, Teti M et al. Barriers and facilitators to HIV pre-exposure prophylaxis uptake, adherence, and persistence among transgender populations in the United States: a systematic review. AIDS Patient Care and STDs. 2022;36(6):236-48. 
  17. Hallarn J, Scheim AI, Bauer GR. Pre-exposure prophylaxis awareness and use among transgender and non-binary individuals in Canada. Journal of Acquired Immune Deficiency Syndromes. 2024 Aug 1;96(4):341-9.
  18. Public Health Agency of Canada. Trends in HIV pre-exposure prophylaxis [HIV-PrEP] use in nine Canadian provinces, 2019 - 2022. 2023. Available from: https://www.canada.ca/content/dam/phac-aspc/documents/services/publications/diseases-conditions/trends-pre-exposure-prophylaxis-use-in-9-canadian-provinces-2019-2022-infographic/trends-pre-exposure-prophylaxis-use-in-9-canadian-provinces-2019-2022-infographic.pdf 
  19. Zhang C, McMahon J, Simmons J et al. Suboptimal HIV pre-exposure prophylaxis awareness and willingness to use among women who use drugs in the United States: a systematic review and meta-analysis. AIDS and Behavior. 2019 Oct;23:2641-53. 
  20. Sevelius JM, Keatley J, Calma N et al. ‘I am not a man’: trans-specific barriers and facilitators to PrEP acceptability among transgender women. Global Public Health. 2016;11:1060-75.
  21. Gotsche CI, Steyn PS, Narasimhan M et al. Integrating pre-exposure prophylaxis of HIV infection into family planning services: a scoping review. BMJ Sexual & Reproductive Health. 2023 Jul 1;49(3):210-8. 
  22. Scott RK, Deyarmond M, Marwitz S et al. Implementation of an educational intervention to improve HIV pre-exposure prophylaxis services for women in an urban sexual health clinic. AIDS Patient Care and STDs. 2023 Sep 1;37(9):447-57. 
  23. Orser L, Elmekki M, Francoeur M et al. HIV prevention for women: exploring the uptake of pre-and postexposure prophylaxis (PrEP and PEP) among cis and trans women accessing nurse-led HIV prevention services in Ottawa, Canada (PrEP-RN). Canadian Journal of Human Sexuality. 2023 Dec 1;32(3):289-97.
  24. Haines M, O’Byrne P. Nurse-led safer opioid supply and HIV pre-exposure prophylaxis: a novel pilot project. Therapeutic Advances in Infectious Disease. 2022 Apr;9:20499361221091418. 
  25. Roth AM, Tran NK, Felsher M et al. Integrating HIV preexposure prophylaxis with community-based syringe services for women who inject drugs: results from the project SHE demonstration study. Journal of Acquired Immune Deficiency Syndromes. 2021 Mar 1;86(3):e61-70.
  26. Sevelius JM, Glidden DV, Deutsch M et al. Uptake, retention, and adherence to pre-exposure prophylaxis (PrEP) in TRIUMPH: a peer-led PrEP demonstration project for transgender communities in Oakland and Sacramento, California. Journal of Acquired Immune Deficiency Syndromes. 2021 Dec 15;88(S1):S27-38. 
  27. Nelson LE, James L, Coleman T et al. A recipe for increasing racial and gender disparities in HIV infection: a critical analysis of the Canadian guideline on pre-exposure prophylaxis and non-occupational post-exposure prophylaxis’ responsiveness to the HIV epidemics among women and Black communities. Canadian Journal of Human Sexuality. 2019 Apr 1;28(1):1-4. 
  28. Seidman D, Logan R, Weber S et al. Reimagining preexposure prophylaxis provision for women in the United States. Clinical Infectious Diseases. 2022 Jun 15;74(12):2243-8. 

Externally reviewed by: Lauren Orser, Omar Ramcharran & Jaymie Sampa

About the author(s)

Mallory Harrigan is CATIE's knowledge specialist, HIV testing. She has a master’s degree in community psychology from Wilfrid Laurier University.