“No other actor can deliver what communities can”

AIDS can be ended as a public health threat by 2030, but only if communities most affected by HIV get the support they need from governments and donors, UNAIDS has warned.

What is the report about?

For World AIDS Day (1 December), UNAIDS has released evidence on the critical role communities play in the HIV response, and how underfunding and other barriers are harming their work.

Why is it important?

Evidence shows it is possible to end AIDS as a public health threat by 2030. But only if people with HIV and the groups most affected by it can lead programmes and support services.

Commenting on the report, Winnie Byanyima, UNAIDS Executive Director, said: “Too often, communities are treated by decision-makers as problems to be managed, instead of being recognised and supported as leaders. Communities are not in the way, they light the way to the end of AIDS.”

What does it say?

The report provides examples from around the world to show that, in every area of the HIV response, “no other actor can deliver what communities can”.

Services

Communities often lead the way in finding ways to make HIV services more effective. It was community-led organisations that came up with the idea of antiretroviral treatment (ART) adherence clubs, making ART refills available in community settings, and multi-month dispensing. Innovative, people-centred support like this is now central to many countries’ HIV strategies.

Community-led responses improve service uptake too. In areas of rural Nigeria, for example, programmes delivered by community-based organisations were linked with a 64% increase in uptake of HIV treatment, and a doubling of interest in HIV prevention services. In Kenya, people who engage with community-based organisations were four times more likely to use condoms consistently. In Tanzania, where sex workers had access to peer support, HIV prevalence was half the national average for sex workers. In Uganda, peer support for women with HIV to prevent parent-to-child transmission halved the drop-out rate. In Zambia, peer support more than doubled PrEP uptake among female sex workers.

Laws and policies

Community-led advocacy has changed laws and policies that have improved the lives of people from communities most affected by HIV and strengthened public health. Community-led advocacy was central in improving access to generic HIV medicines, reducing the cost of treatment from US$25,000 per person per year in 1995 to less than US$70. In South Africa, in the early 2000s it was community-led advocacy which ensured antiretroviral medicines were finally made available for HIV treatment and for prevention of parent-to-child transmission. This influenced other countries to follow.

More recently, community-led advocacy has led Côte d’Ivoire to remove user fees for HIV testing and treatment. It has resulted in the Malawi government making ART more widely available and removing identification requirements that were stopping sex workers from getting HIV services. Community-led advocacy has also led Togo to scale up multi-month ART dispensing.

Crisis situations

Communities are often the first responders in crisis situations. Communities most affected by HIV played a central role in keeping the HIV response going during COVID-19 in many countries. They have been key to keeping HIV services going during humanitarian situations, such as Cyclone Idai in Mozambique, landslides in Uganda and the war in Ukraine.

HIV research

The People Living with HIV Stigma Index, conducted by and for people with HIV in more than 100 countries, is now the world’s largest and most-respected information source on HIV-related stigma and discrimination. In South Africa, community-led monitoring of 400 health clinics networks involving around 33,000 people with HIV led to new appointment protocols being introduced to reduce clinic wait times and multi-month dispensing of ART medication.

The barriers hampering community-led efforts

Despite their effectiveness, community-led responses are often unrecognised and under-resourced. In some places they are under attack.

In 2012, over 31% of HIV funding was channelled through civil society organisations. But in 2021, only 20% of funding was.

Other key barriers include:

• people in community organisations are often under-paid or not paid at all
• community-led organisations lack long-term core funding, so they often have to rely on short-term programme-based funding
• it can be difficult for community-led organisations to become legally registered and this can block access to essential funding
• community-led organisations are often excluded from decision-making and health systems, particularly criminalised and stigmatised groups
• a growing anti-rights backlash is undermining community leadership (for example, in some countries the idea of female leadership has been compromised).

What does this mean for HIV services?

This new report can be used to push for further recognition, support and funding for community-led organisations.

The report has three main calls which can be used as advocacy focuses. These are:

1. Community-led groups should be central to the design, budgeting, implementation, monitoring and evaluation of all plans, policies and programmes that affect the HIV response.
    
2. Community-led organisations need long-term core funding so they can scale up programmes, and staff can be properly supported and paid. Funding application processes should be simplified.
    

3. Barriers to community leadership must be removed. This means recognising and protecting the rights of people from marginalised and criminalised groups. Governments should ensure access to decision-making as well as safe and meaningful spaces for communities to do their essential work.

Any government that has signed the 2021 Political Declaration on HIV and AIDS has committed to enable community-led organisations to deliver 30% of testing and treatment services, 80% of HIV prevention services for people at high risk of HIV, and 60% of programmes to support societal changes that enable an effective and sustainable HIV response. These targets are for 2025.

This declaration can also be used to hold governments to account on the commitments they have made to support community-led responses.