Community engagement in the provision of culturally competent HIV and STI prevention services: lessons from the French experience in the era of PrEP

Communities have been a driving force in the response to the HIV epidemic, advocating for research, the access to treatment and healthcare, and human rights for key populations (KP) and people living with HIV (PLHIV). The importance of community engagement (CE) in the development and implementation of pertinent programmes throughout the HIV care continuum has been widely recognized 1, 2, 3. In the context of increasing pre‐exposure prophylaxis (PrEP) research, interest and access (though still limited), there is an opportunity to have a fresh look at CE regarding HIV/STI research and care delivery. France, where PrEP has been authorized and fully reimbursed since 2016, may provide key lessons for CE in the provision of comprehensive, culturally adapted HIV/STI prevention and treatment services.

Community involvement in HIV/AIDS is political and ethical. Community‐based organizations (CBOs) such as Gay Men's Health Crisis (US), Terrence Higgins Trust (UK), the Grupo Pela Vidda (Brazil), AIDES (France), or international organizations such as ACT‐UP, have historically played important roles in advocating for suitable information on prevention tools and adequate access to health for PLHIV and most‐at‐risk populations 2, 3, 4. PrEP research is not an exemption 5. For example, Act Up‐Paris and others advocated for the early termination of two PrEP studies due to, among other reasons, the lack of medical services for those who seroconverted on study 6, 7, 8, 9. While implementation of “Good Participatory Practice Guidelines” 10, 11 and community advisory boards 12 in research studies are steps forward, further effort is needed to ensure more meaningful CE throughout the entire life course of research studies 13, 14. For example, by building the evidence‐base for CE and evaluating its success in meeting community needs 15.

In 2008, AIDES adopted a unique strategy to invest financial and human resources for the creation of a community‐based research unit. Working in partnership with research institutions and funding bodies, community‐based studies have identified community needs and contributed to the development of innovative and adapted services: rapid HIV testing, educational sessions for injection drug users, and PrEP counselling.

While medical providers may lack the time, skill and/or motivation to address sexual health issues 16, 17, CBOs are well‐placed to identify the sexual health needs of KP and provide comprehensive and adapted care 18. The Fenway Community Health Center in Boston provides comprehensive “culturally competent” care 19. The 56 Dean Street clinic in London offers a succesful well‐being programme and an “express” service for self‐sampling HIV and STI tests 20. In Bamako, the CBO ARCAD‐SIDA's night sexual health clinic provides testing and treatment services for MSM and sex workers 21. Finally, results of a community‐based testing satisfaction survey conducted by AIDES 22 partially led to the creation of two community‐based sexual health structures that integrate sexual and mental health consultations (SPOT Beaumarchais in Paris and SPOT Longchamp in Marseille). Community‐based clinical programmes are important examples of how communities and medical professionals may work together to develop and provide effective services.

PrEP provision is an opportunity to provide comprehensive sexual health services, engage individuals on their needs, and to equip them to better evaluate and reduce their HIV/STI risk. AIDES has been a full partner in two PrEP studies: ANRS‐Ipergay 23 and ANRS‐Prévenir 24, 25. Peer counselling, provided by AIDES counsellors, was constructed collectively with social science researchers (GRePS and Inserm). Based upon individual needs and expectations, discussions go beyond purely medical aspects regarding PrEP to include questions such as “What risks can you identify related to your sex life?” and “Is your sex life as fulfilling as you would like?.” Therefore, PrEP is not an end in itself, but rather an opportunity to empower communities regarding sexual health.

As PrEP protects from HIV but not STIs, appropriate and adapted risk reduction methods such as prophylactic antibiotics 26 should be considered. Follow‐up appointments, required in the provision of PrEP, allow for STI information, regular screenings and early treatment. However, this regular hospital medical follow‐up can represent a barrier, and respondents to a European community‐based survey felt that PrEP should be available at community‐based health settings or at the general practitioners’ 27. Provision of HIV and STI services outside of traditional medical structures is essential to reach populations who are most exposed and face access barriers. Community‐based initiatives such as community‐based testing have reached at‐risk populations as well as those who have never been tested 18, 28 and have identified individuals at an earlier disease stage 29. More innovative partner notification strategies, such as CheckOut™ developed by the Checkpoint LX in Portugal 30, may be used in the context of PrEP 25.

All communities particularly affected by HIV and STIs must be involved in the development of adapted and inclusive information and programmes regarding provision of PrEP and/or other services (e.g. PEP, STI prophylaxis) which reach KP other than MSM. Regarding transgender people, for example, concerns related to finding “trans‐competent” providers and potential interaction with hormones should be addressed 31. The Thai Red Cross Tangerine Health Center is one example of a community‐engaged model providing comprehensive services for transgender women 32. Women may experience barriers to PrEP, indicating a need for adapted services. Several community‐based initiatives are increasingly providing tailored PrEP information to increase awareness among women 33, 34. CE is also critical for the development of adapted and sustainable prevention programmes among sex workers 35, 36. Finally, it is necessary to address stigma related to sexual preferences, drug use, sex work and PrEP use 37, 38, 39.

Communities have the knowledge, skills and motivation to provide culturally adapted information and services for PLHIV and KP. Community‐based initiatives can and must go further. For example, community‐based ART delivery, already implemented in some southern countries 40, needs to be expanded to northern countries. Partnerships between communities and traditional health structures will require the support of governments and international bodies to implement and enforce policies for task shifting in addition to significant funding. We call for a united effort amongst government bodies, health providers, and CBOs to make a comprehensive, positive approach to sexual health for PLHIV and for those most exposed to HIV a reality.

Competing interests

The authors declare that they have no competing interests.

Authors’ contributions

BS, DRC, RMD, SM and DM conceptualized the commentary. SM and DM provided content on AIDES’ community‐based approach and activities. BS, DRC, RMD, SM and DM discussed key ideas and concepts forming the basis of this commentary. RMD and DRC reviewed the literature and wrote the manuscript. All authors reviewed and approved the final version.

Castro, D. R. , Delabre, M. R. Morel, S. , Michels, D. , Spire, B. , Community engagement in the provision of culturally competent HIV and STI prevention services: lessons from the French experience in the era of PrEP . J Int AIDS Soc. 2019; 22(S6):e25350