The community-based response to HIV/AIDS has evolved significantly over the past 30 years. From bake sales to AIDS walks, from kitchen table meetings to board rooms, from helplines to one-stop health centers, and, in some cases, from HIV-only to integrated services, the response to the epidemic itself has shifted. These shifts are due in part to the advent of new testing technologies and treatment options, as well as changes in policy, funding and service provision contexts.
In response to the myriad of questions arising from these shifts, teams of community-based organization representatives and academics from British Columbia and the Atlantic region (covering Nova Scotia, New Brunswick, Prince Edward Island, Newfoundland and Labrador) secured an HIV/AIDS Planning Grant from the Canadian Institutes of Health Research in order to do some initial research and to work collectively to develop a research agenda that will enable communities to best respond to these changes.
These two regions share many common challenges in addressing HIV/AIDS, including: providing community-based services across a mix of urban and rural areas, heavy reliance on federal funding by AIDS Service Organizations, growing demand for services from people mono-infected with HCV or co-infected with HIV and HCV, shared concerns about pervasive HIV-related stigma and its impact, as well as the limitations organizations are facing when doing advocacy work.
Our goal for this project, called Rethinking ASOs? Responding to the End of AIDS Exceptionalism through East-West Collaboration, was to collaborate in sharing our understanding of the shifting roles of ASOs. The goals of Rethinking ASOs? were process-based – to foster dialogue, to share knowledge, and to develop priorities for further research that can be acted upon together or separately, and ultimately benefit the HIV/AIDS sector. And as the title suggests, our process was grounded in a question – do AIDS Service Organizations (ASOs) need rethinking within the current policy context?
To achieve these objectives, we held two simultaneous, one-day Deliberative Dialogue meetings on November 24, 2014 – one in the Atlantic region and one in BC – where participants explored the future of HIV/AIDS service delivery in the context of the end of AIDS exceptionalism.
In advance of these meetings, the team conducted an initial literature review examining how the mandates of ASOs have changed over the past 30 years, including professionalization, the relationship with advocacy, and service provision shifts away from exceptionalism to integrated service delivery. We also mapped out regional and national policy landscapes and developed a timeline of significant policy shifts over the past 30 years, relating to implications for advocacy, and shifts to integrated models, HIV as a chronic disease, and/or AIDS exceptionalism.
And, we recorded three videos and developed online resource pages featuring the findings from the above reviews, as well as from AIRN’s PHAC-funded Exploring the Landscape of Communicable Diseases in Atlantic Canada report. These are publicly available:
The Deliberative Dialogue events held in both regions (November 24, 2014) were an opportunity to share information and host conversations on what further research could be done to support communities to respond to these changes. We engaged diverse group of stakeholders in each region, including people living with HIV/AIDS, representatives of community organizations, representatives from the policy sector, and university-based academics, to participate. While resource and process limitations meant that the events needed to stay small, we sought to bring as much diversity as possible into the room, and recognized this event as the first or second step in what is hoped to be a longer-term process where many more voices will be able to participate in the next steps.
Overall, the Rethinking ASOs? process was successful in bringing together a cross-sector team of leaders in HIV research, service delivery and policy in both the Atlantic and BC. The deliberative dialogues events provided the opportunity to have similar discussions across both regions in order to foster cross-sectoral collaboration and opportunities for knowledge sharing, set priorities for action as we move out of an era of AIDS exceptionalism and towards integration, and identify key research (or information gathering) priorities to help us navigate through the current policy/funding and advocacy contexts.
A project report is now available, which provides an overview of the process, a summary of the dialogues in Vancouver and Halifax, as well as outlining proposed next steps for keeping this important conversation moving forward.
Questions? Feedback? Get in touch!
Director, Community-Based Research [email protected]