It all started in 2007...
The seeds of the Trans Women HIV Research Initiative (TWIRI) took root in 2007 with just 4 people who wanted to support trans women in Toronto and recognized that in order to do that, they needed to talk to the community. The initial [team] included Dr. Mona Loutfy, Dr. Carmen Logie, Ms. Wangari Tharao, and Ms. Yasmeen Persad. Together, they developed a Women Community-Based Research (WCBR) Project entitled “The Women CBR Project” to learn about the issues women living with HIV were facing and wanted researched. They conducted 11 focus groups and one of them was with trans women; this was the first focus group in Canada with trans women with HIV. It superseded everyone’s expectations: 10 trans women living with HIV were invited to participate in a focus group to discuss their experiences, and 20 trans women actually arrived. Clearly, there was a need for change and trans women wanted the support. The team did not take this lightly.
After analyzing and reflecting on what they had learned in that initial focus group, the team began to tackle the challenges they heard from the participants by implementing changes to their own healthcare delivery models and conducting further research. Wangari, the Executive Director of Women’s Health in Women’s Hands (WHIWH; community health centre in Toronto), implemented trans inclusive care practices at WHIWH by having the staff and care providers that work there participate in intensive training regarding care for trans women. Carmen began digging deeper into the issues that were raised by trans women to tease out specific issues and to gather additional empirical evidence to create change at broader levels. This initial work informed an Intersectional Stigma Model.
As both a clinician and a researcher, Mona began to implement changes to her own care practices at Maple Leaf Medical Clinic (MLMC), a busy primary and HIV care clinic in downtown Toronto. In her role as a researcher, she recruited a national team to address gaps in healthcare for women living with HIV. In 2011, the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) was launched and Yasmeen, hired as a Peer Research Associate (PRA) for the study, led the way to ensure that the surveys were sensitive to the needs of trans women, and that trans women were purposefully sought out to contribute to transforming care for women living with HIV.
As the baseline CHIWOS data collection period neared completion, Ashley Lacombe-Duncan expressed her interest in health care access and quality experienced by trans women with HIV. Ashley, Yasmeen and Mona became a team and met frequently to discuss how to best approach the analyses involving trans women in CHIWOS. Informed by her own experiences and her connections to the community, Yasmeen led the research questions and analyses and first began presenting on the CHIWOS trans women data at the [International Workshop on HIV and Women] in Boston in February 2015. Following this presentation, Mona sought out additional funding and received a Canadian Institutes of Health Research grant for PRA-led knowledge translation. Yasmeen was the first PRA to take this challenge on – TWIRI was finally born on May 1, 2017!
TWIRI has been overwhelmed with student interest and support from the community, researchers, students, and clinicians. What started as the vision of 4 people has blossomed into a large, diverse team that is taking a community-driven, interdisciplinary approach to optimizing the health and wellbeing for trans women living with HIV.
At the heart of TWIRI is Yasmeen Persad, a trans woman and a strong advocate for the trans community. Yasmeen continues to ground the TWIRI team and push everyone to think deeply about the knowledge they have gained and where we go from here – we are only beginning and we thank Yasmeen for her leadership.