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The United Nations Member States’ commitments of 2016 and 2021 to end AIDS by 2030 recognize the importance of community leadership in the HIV response. Through the Greater Involvement of People Living with HIV/AIDS (GIPA) principles, the meaningful inclusion of networks of people living with HIV and affected communities in the HIV response is necessary in decision-making, planning, implementation and monitoring (1).
Communities of people living with or affected by HIV have been at the forefront of delivering HIV-related health services and critical social inclusion responses since the start of the HIV pandemic. They deliver health services (e.g. health promotion, retention, screening and testing, antiretroviral therapy), encourage community mobilization, create demand for services, and increase legal literacy. At the same time, they facilitate social inclusion, social justice and social protection, and promote the rights of people from marginalized populations by addressing health determinants and enhancing opportunities and access to resources and services (2).
In the context of universal health coverage, all people should have access to the full range of good-quality health services they need, when and where they need them, without financial hardship. This covers the full continuum of essential health services, from health promotion to prevention, treatment, rehabilitation and palliative care across the life course (3).
Not every country in eastern and southern Africa has achieved universal health coverage, but 75% have integrated universal health coverage as a goal in their national health strategies (4). Translating resources for health and development assistance into equity, good-quality health services and financial protection has been slow (5). Universal health coverage cannot be reached by delivering health services in clinics without considering political, social and economic factors. Community-led organizations have challenged pervasive social and economic inequalities to protect the right of communities to health.
Community responses to HIV can contribute significantly to achieving universal health coverage. With more than two decades of experience in HIV service delivery, communityled organizations hold duty-bearers accountable and shape the ecological systems of health delivery processes. When health systems are people-centred, communities make the most of the critical decisions in the system by accessing services as clients; setting rules and allocating resources as policy-makers; or dealing with those rules as implementers, managers, providers and service users (2).
Community-led services have several benefits, including demand creation, rapid scale-up of interventions, and improved health outcomes (3). Community-led services are critical to achieving universal health coverage and beyond. Achieving universal health coverage means that “all people have access to the full range of quality health services they need, when and where they need them, without financial hardship” (5).
Many people in developing countries have substandard access to health services. The World Health Organization (WHO) and the World Bank estimate that at least half of the world’s population is underserved (5). Health is not the only concern for these people—for example, socioeconomic conditions may push people into poverty, and they may have to pay for health-care services out of pocket.
The eastern and southern African region struggles with huge health inequalities along sociocultural, economic and political fault lines (6). The region needs to reach people from marginalized communities with health services. About 20.8 million people in the region were living with HIV in 2023 and 450,000 people newly acquired HIV. About 83% of these 20.8 million people were receiving antiretroviral therapy. Treatment coverage in the region ranges from 22% in Madagascar to 96% in Rwanda (7).
Punitive laws that criminalize people from key populations marginalize many communities (8). This reality and the high disparities in treatment coverage between countries reflect the disparities across countries and among the diverse populations of people living with HIV in each country.
The increasing burden of chronic lifestyle-related conditions is alarming. The advent of health emergencies such as COVID-19, Ebola and yellow fever underscores the vulnerability and fragility of public health systems.
The role of non-state actors and civil society in expanding access to HIV services remains central to achieving health outcomes. The success of universal health coverage depends on delivering services closer to where people are, and for services to meet people’s needs without them having to pay. It is critical to learn lessons from HIV communities in delivering community-led and people-centred health services.
Whether formally or informally organized, UNAIDS describes community-led organizations, groups and networks as “entities for which the majority of governance, leadership, staff, spokespeople, membership and volunteers reflect and represent the experiences, perspectives and voices of their constituencies and who have transparent mechanisms of accountability to their constituencies. Community-led organizations, groups, and networks are self-determining and autonomous, and not influenced by government, commercial, or donor agendas. Not all organizations that are based in community settings are communityled” (9).
Community-led responses are “actions and strategies that seek to improve the health and human rights of their constituencies, that are specifically informed and implemented by and for communities themselves and the organizations, groups and networks that represent them” (9).
Through community-led and people-centred approaches, services relevant to the needs of affected populations can be delivered to where people are—thus challenging the notion of “difficult-to-reach” populations.