The continuing role of communities affected by HIV in sustained engagement in health and rights

INTRODUCTION: The meaningful involvement of persons affected by a disease is a unique aspect of the HIV response that places people living with (PLHIV) and those directly affected by HIV (peers) at the centre of the design, development and implementation of service delivery and research and policy making. The principle of greater involvement of PLHIV (GIPA) has and will increasingly ensure equitable access to services and engagement of marginalized groups in the HIV response, and to health services more broadly. This paper describes the history, current place in the HIV response and potential future role of PLHIV and communities in health responses. DISCUSSION: Historically, the role of communities of PLHIV and peers in service delivery, research and drug development, advocacy, social and political accountability, resource mobilization and social and human rights protection is well documented. Their leadership and engagement have contributed directly to improved outcomes in access to HIV treatment, prevention, support and care services around the world. Their continued and expanded role is especially important for the future success of HIV responses in sub‐Saharan Africa, where the HIV burden remains the greatest. The lessons learned from the leadership and involvement of communities of PLHIV and peers in the HIV response hold value beyond HIV responses. The models and approaches they have efficiently and effectively utilized have relevant applications in addressing shortfalls in health systems in the COVID‐19 era, as well as broader, more integrated health challenges as countries move to develop and operationalize universal health coverage (UHC). However, neither HIV nor other health and development targets can be met if their contributions are not adequately recognized, valued and funded. CONCLUSIONS: The past three decades have demonstrated that communities of PLHIV and their peers are instrumental in sustaining engagement and advocacy for health equity and financing for health and ensuring that the human rights of all people are recognized and upheld. Quality and effective integration of health systems and UHC can be more effectively designed, implemented and sustained with communities of PLHIV and peers at the centre.