For World AIDS Day on 01 December, Palladium’s Zach Bernsten explores how community organisations are the key to ending the HIV epidemic around the world.

The UN estimates that there are 37.9 million people living with HIV worldwide, and an estimated USD 26.2 billion in investments will be required for the continuing AIDS response effort in 2020 alone. While great strides have been made towards ending the epidemic, challenges persist in many countries for marginalised groups, which include sex workers, people who inject drugs, members of the LGBTQ community, and others.

But these groups and their needs are just beginning to be understood by service providers, researchers, and policymakers. It is at the community level that these groups can be best reached and connected. “Where communities are engaged, we see change happen,” says UN Secretary-General Antonio Guterres. “We see investment lead to results. And we see equality, respect and dignity. With communities, we can end AIDS.”

Communities’ Reach

In Vietnam, where 211,996 people were living with HIV as of mid-2019, community-based services and grassroots prevention efforts play a crucial role in supporting key population groups that are frequently not served by the country’s public health system.

“At its core, these organisations have the local knowledge, expertise, and reach to connect these ‘last-mile’ groups with services and treatment,” says Ron MacInnis, a director in Palladium’s Health practice and an expert on HIV. “If we can’t reach these groups, we can’t end HIV.”

These community organisations have worked closely with government AIDS programs to develop and reinforce prevention policies, provide behaviour change communications, and deliver home-based care to people living with HIV — all services that they are uniquely capable of providing. They distribute guidance on HIV prevention, refer people to other trained workers and services, and provide outreach and counselling.

But many of these organisations lack funding and legal status — often, they’ve been funded by international organisations and will need domestic support to stay sustainable.

Social Contracts

There is a tool that can help domestic governments fund and support community organisations to continue providing the necessary services to end the HIV epidemic: social contracts. These are legally binding agreements between a government and a community organisation, whereby the government agrees to pay for requested services provided by the community group.

“These agreements are simple on the surface,” says MacInnis, “but they take a lot of negotiation, trust building, and behind-the-scenes work to ensure governments have their own domestic resources secured and available for appropriate use.”

The government of Vietnam has signed various social agreements, helping community organisations obtain legal status, receive technical assistance to improve their administrative capabilities, and achieve more sustainable funding. As a result, organisations in Vietnam have been able to provide information and counselling to people living with HIV, distribute condoms and safe syringes, and support enrolment in social health insurance plans.

“These organisations are giving communities a voice in HIV prevention efforts,” says MacInnis. “They are the solution to the remaining challenges for Vietnam to control HIV — and other countries can follow suit to achieve more sustainable, locally-owned HIV epidemic control.”

Data from Communities

Communities can also help collect the data that is crucial to ending HIV. Data collected at the client, facility, and community levels are crucial for functioning information systems. This data can be used strategically to track patients across community and facility services to improve care and measure progress.

Data solutions can be both low and high tech. “We are using geospatial modelling and analysis, which lets us predict high-risk population groups so we can target community services,” says Liz Nerad, Senior Advisor for Digital Solutions at Palladium. “We are even exploring the use of machine learning to create patient profiles, which inform individualised interventions.”

“To end the epidemic, we must re-emphasise the role of communities. They are reaching the people, and the data, that are outside traditional public health services.”

Palladium implements the Health Policy Plus (HP+) project for USAID, which works with the government of Vietnam and around the world to support social contracts.

Palladium also implements the Data for Implementation (Data.FI) project, USAID’s global strategic information and data use project for HIV programs. Click here to learn more about Data.FI.