Michelle Rugamba

Grassroot approaches to HIV are key to reducing stigma and discrimination, and improving the quality of life of people affected by HIV. The session highlighted the challenges with grassroots approaches to HIV and the opportunities that exist for Governments and other corporations to work collaboratively with community organizations.

Speakers in this session included Dr. Harpreet Kochhar, President of the Public Health Agency of Canada, and four activists: Sbongile Nkosi, Harlan Pruden, Jody Jollimore and Maureen Owino. Dr. Kochhar highlighted the work taking place at the frontlines through community-based initiatives, which is central to our collective efforts to achieve the global HIV/AIDS targets. He also highlighted the Government of Canada’s five-year action plan on sexually transmitted and blood-borne infections and how community partnerships are key to working around the action plan. Sbongile, Harlan, Jody and Maureen touched on the importance of communities in responding to HIV, supporting Indigenous communities, LGBTQIA+ communities, and women living with HIV. If these key populations are not supported and funded for their activism work, we will not achieve the global HIV/AIDS targets. Governments and donors should know that without communities, the HIV response will not succeed. Sbongile also noted how the failure of the COVID-19 response, such as the low intake of vaccines in lower and middle-income countries, was because of the lack of engagement with community members and those who represent these communities. We must decolonize research and structurally question some of the premises of basic science.

Grassroots organization is heavy work. It is not safe to work, yet activists consistently choose to engage in this work despite not having the backing it needs. Commitments from Governments must not come with caveats because you cannot do genuine activism when your funder is the Government and you sometimes must fight the hand that feeds you. Governments need to work hand in hand with grassroots organizations and meaningfully support communities in the HIV response. With the new generation, we should not stop talking about HIV despite the treatments available. We have to continue to do our part and educate.

Nicolas Ritter

COVID-19 has highlighted the central role played by communities in providing equitable access to HIV services. Community organizations continue to support underserved populations, despite the lack of support from governments. Speakers shared their insights on community advocacy, leadership, and mobilization, and how to take community-led initiatives further.

Dr. Kochhar of Public Health Agency of Canada introduced the session as Canada's 5 years plan on HIV places communities as one pillar to the action plan. Community project is central although much more needs to be done to sustain efforts. Sibongile Nkosi (South Africa) talked about the need to engage with people most affected by HIV to achieve global targets. She stressed that “there is no HIV response without communities… we are the best allies in a successful response.” Harlan Pruden (Canada), a first Nation Cree community leader known for his work in the two-spirit community, talked about the work currently ongoing to decolonize research to improve reconciliation. Jody Jollimore (Canada) shared how as a young gay man arriving from the countryside to a big city, he was coached by the older community: “You can take out our rights, put us in prison, but you won’t get rid of us. Each generation has a queer generation and will carry on ... prevention and support” In the final intervention, Maureen Owino (Canada) spoke about the isolation of women living with HIV: “When I arrived in Canada there were two organization of Canadian women living with HIV – they shut down.”

Carrying over messages from the opening ceremony, participants in this session stressed that communities living with and affected by HIV are at the heart of the response. The growing consensus about community health-led projects to prevent, treat, test, follow up, deliver harm reduction services, and provide support is that there is no possible efficient HIV response without us. However, this recognition is not followed by funding, policy change or the necessary transformation that can made a difference if we really want to end AIDS by 2030.