One of the most powerful highlights from the June 2025 HIVE Strategic Planning Meeting was from the recipient-of-care community. While community representatives acknowledged progress with ministries of health involving recipients of care in HIV program implementation, they emphasized the urgent need to be actively involved in planning and decision-making processes.
“Where is the community’s participation in all these discussions and engagements?” said Robinah Babirye, program officer with Uganda’s AY+ youth organization, in a passionate plea to meeting attendees. “While we have our country action plans, let us have at least a community representative, not just sitting at the table and listening, but having their ideas and opinions put into action.”
In addition to the call for participation in decision-making processes, recipients of care representatives also called for investment in community engagement. There was also a consensus among meeting participants, based on presentations and discussions, that allocating resources for community-led work is a crucial step toward sustaining impact and empowering continued community advocacy.
“We do community mobilization. We go to the community. We sensitize. And in some cases, we use our own resources to do that,” said Stella Kasone, a community advocate and technical director for the National Council of People Living with HIV in Tanzania. “But we are not paid. We are volunteers. We go to find the mothers, refer them, and do follow-ups, but still, we receive no support. So, we are saying that if you want us to continue this work, we need support. This is the reality on the ground.”
The meeting also reinforced the pivotal role of civil society as a bridge between communities and health facilities. Through community-led monitoring, civil society organizations gather feedback from recipients of care about barriers to adherence or engagement with services, such as antiretroviral therapy (ART) or Pre-exposure prophylaxis (PrEP). This feedback is then shared with health facilities and policymakers to strengthen service delivery and accountability.
“The struggle to save lives continues,” said Anele Yawa of the Treatment Action Campaign (TAC-SA). “That is why we must make sure that we work together with the government to make sure that whatever services are provided to our people are in their best interests.” The takeaway was a resounding “Nothing for us without us”— a slogan and recipient-of-care clarion call for inclusion at every level of the health care system. But more than that, it is a strategy for success. By doubling efforts and investing in meaningful community engagement, country teams can progress toward eliminating vertical transmission of HIV.
