December 1st marks World AIDS Day. First established in 1988, it aims to honour the lives and advocacy of individuals living with HIV and to remember those we have lost to diseases related to AIDS. This year’s theme is “Let Communities Lead.” Using community-based approaches, the Women and HIV Research Program (WHRP) at Women’s College Hospital is committed to conducting research that aligns with the priorities of those living with or at risk of HIV.
The Canadian HIV Pregnancy Planning Guidelines
The Canadian HIV Pregnancy Planning Guidelines (CHPPGs) is a community-informed, evidence-based clinical practice guideline designed for healthcare providers, which aims to support individuals living with and affected by HIV in their path to parenthood. While resources were initially developed to aid clinicians in implementing the CHPPGs, there was a need for comprehensive parenting and reproductive health planning for positive individuals and communities.
In a commitment to fostering a community-led approach, three community members were engaged to formulate a project framework. Collaborating with the academic CHPPG team, this collaboration gave rise to a co-design project. By the spring of 2021, 11 community members from various regions in Canada joined the initiative. For World AIDS Day, the CHPPGs team has launched a new online platform for Canadians living with HIV interested in exploring parenting, reproductive choices, and rights. Visit: https://hivparentingchoices.ca/.
The Women-Centred HIV Care Model
In collaboration with community members and partners, WHRP released the Women-Centred HIV Care (WCHC) Model in 2018, an initiative designed to promote comprehensive delivery of HIV care for patients. The model is a tool that equips healthcare practitioners with resources to enhance their understanding of the distinct needs of women and gender-diverse individuals with HIV. To guide the delivery of the WCHC Model, WHRP, in collaboration with the Centre for Effective Practice, developed complementary toolkits that provide individuals with the information they need to advocate for and make informed choices about their healthcare.
The community has shared a need for additional tools to facilitate individuals in applying the WCHC Model. Under the sponsorship of a WCH AFP Grant, endeavors are in progress to produce a user-friendly pocketbook designed to improve communication between patients and providers.
The Trans Women HIV Research Initiative
The Trans Women HIV Research Initiative (TWIRI) was co-founded and is co-led by community activist Yasmeen Persad. TWIRI recently led a review of the WCHC Model from the perspective of trans women and gender diverse people. Recommendations for care providers include familiarizing themselves with inclusive language for trans individuals, educating themselves on the broader social factors impacting the health of trans women and gender diverse individuals, as well as establishing supportive care practices like developing a network that understands and advocates for the needs of the trans community.
Join the Virtual Streaming Party at the TWIRI Conference on January 17, 2024, where the 2023 conference sessions will be broadcasted along with essential conversations aimed at fostering positive change and advancement in trans women’s healthcare. Register today.
What’s next?
Dr. Mona Loutfy, founder of WHRP, and national colleagues secured $840,000 in funding from the Pan-Canadian Women’s Health Coalition, supported by the Canadian Institute of Health Research and Women and Gender Equality Canada. This funding will aid in establishing the WCHC Hub, comprising a team of over 100 researchers, community leaders and women with HIV.
Despite the call’s requirement for tripartite leadership (Research, Clinician and Community-Based Organization), the WCHC Hub has expanded its leadership team to include a fourth member: a woman living with HIV.
For Dr. Loutfy and WHRP staff, prioritizing community leadership is essential. As echoed by the community, their guiding principle remains: “nothing about us, without us.”