By Maureen Owino, Director, Committee for Accessible AIDS Treatment
By around 1998 in community health centres in Toronto, service providers found an increasing number of immigrants and refugees, including those without formal legal status in Canada living with HIV /AIDS (IRN-PHAS) were facing treatment access barriers and presenting late for care. These barriers, all of which continue to exist 16 years later include, but are not limited to:
- Lack of access to medications without documentation of legal residency
- Fear of deportation
- Complexity of system & difficulty to understand and negotiate access
- Multiple dimensions of systemic discrimination which compounds vulnerabilities
- Marginalized status, stigma and fear preventing access to information & services & self advocacy
- Lack of culturally competent and appropriate legal, settlement & health services
- Other barriers leading to differential and extremely negative health impacts on both physical and mental health e.g the frightening environment created by criminalization for alleged non-disclosure of HIV status
In 1999 the service providers from the community health centres met to strategize on ways of addressing this challenges.
The Committee for Accessible AIDS Treatment was then formed by the service providers to reduce service access barriers for immigrants, refugees and non-status people living with HIV/AIDS (IRN-PHAs)
This was critical work in itself, but what happened next was even more remarkable.
CAAT was founded by service providers — however, in the past 15 years, CAAT has intentionally transformed from a service provider driven program to a program driven by people living with HIV with a governance structure set up to ensure majority IRN-PLHIV representation including at least one co-chair who is an IRN-PHA .
The outcomes show the real difference that is made when people living with HIV are central partners in decisions and programmes that affect us. These outcomes include:
- Innovative meaningful involvement in research by people living with HIV, where people living with HIV participate as partners and not subjects and are meaningfully involved in all aspects of research studies as employed and paid associates.
- Pioneering PLHIV mentorship in the HIV sector and building the Greater and More Meaningful Involvement for People Living with HIV (GIPA/ MIPA) through structured mentorship
- Leadership in cross- sector collaboration with multiple stakeholders that includes health,social,legal,settlement and HIV sectors
- Service provider training across the province
- Peer treatment literacy training for Immigrant, Refugee, and Non-Status persons living with HIV with over 200 graduates with almost half of them currently in employment or back to school HIV medication access program
- PHA engagement program to Increase PHA professional, communal and social engagement in life goal pursuit and role transitions via 3programs addressing :employment preparedness,sustaining employment and retirement planning
This was extremely sensitive work because immigrants living with HIV are particularly vulnerable and were initially fearful of taking on positions of leadership within CAAT.
it’s very challenging to broker positive changes when affected communities are so marginalized and not able to access services or power structures.Through our work, however, we have have learnt that it is possible to meet this challenge. When communities are involved, invested in and inspired we can foster shared leadership and collective empowerment in the third space of research, policy and practice.
When we involve meaningfully people living with HIV/AIDs,invest by collaborating with our communities, and inspire through shared leadership,equitable and inclusive partnership, and ensure accountability, then communities can dialogue, interact and develop new thinking, hybrid cultures and innovative practices that change the status quo and power relations.