When Community-Led HIV Infrastructure Disappears

For four decades, the global HIV response has relied on community-led organizations to reach populations that formal health systems often can’t. Community groups supply LGBTQ+ communities with testing in countries where homosexuality is criminalized, provide pre-exposure prophylaxis (PrEP) to sex workers, and offer free testing to remote groups.

Much of that work, however, is being shuttered, reversing the HIV gains the world has made in the past 40 plus years.

The Effect of Funding Loss

New research from health nonprofit amfAR reveals that nearly three-quarters of organizations serving key populations have permanently ended at least one service following disruptions to the US President’s Emergency Plan for AIDS Relief (PEPFAR) funding.

PEPFAR was created in 2003 under the George W. Bush administration in an effort to reduce the approximately three million AIDS deaths happening each year. In the years since, its funding is estimated to have saved over 26 million lives in over 50 countries.

“People like me have survived because communities are organized, because we organize care for one another, because we challenge the governments, and we have refused to disappear.”

In 2025, the Trump administration implemented a series of executive orders that saw thousands of global health awards terminated. PEPFAR lost 25 percent—the equivalent to $2.1 billion—of its funding. The filter-down effect of that funding loss has had the biggest impact on local partners, including community-based organizations, according to amfAR’s report. Sixty-three percent of local partners amfAR surveyed had an award terminated, and 23 percent had to close service delivery sites.

“We’re seeing a move toward facility-based care and the termination of grants for community-based delivery of services and testing,” Jennifer Sherwood, director of Research and Public Policy at amfAR, said in an interview with NPQ. “That is really worrisome because facilities don’t work for everybody,”

Since the height of the AIDS outbreak in the 1980s, community groups have been crucial in reaching those who may be deterred from entering a formal health service for fear of discrimination or arrest. Research shows the work of community groups also improves HIV awareness, access and adherence to treatment, and access to services.

“People like me have survived because communities are organized, because we organize care for one another, because we challenge the governments, and we have refused to disappear,” said Erika Castellanos, executive director of Global Action for Trans Equality and a person living with HIV.

The Blue Diamond Society in Nepal, for example, offered HIV treatment and testing in 20 clinics to sex workers; the Africa Queer Network in Uganda provided sexual health services for the LGBTQ+ community; and Society for Women and AIDS in Africa in Burundi supported female sex workers with HIV. Much of this work has had to stop.

Communities Are Essential Infrastructure

“When health systems fail people, communities meet them. They are essential infrastructure. Investing in [communities] makes services more effective, resilient, and cost effective,” Winnie Byanima, executive director of UNAIDS, said at the 26th International AIDS Conference in July in Rio de Janeiro. The US government, however, doesn’t see it that way.

Without such community organizations, Sherwood said there will be a resurgence in HIV and AIDS.

Twenty-one countries so far have recorded an increase in new HIV infections since 2025.

“I would anticipate that if we don’t have a concerted effort to reengage those partners that are doing community-based service delivery and actually reaching the people who are outside of the general health system, that we are going to see outbreaks,” according to Sherwood. “That should be a concern for every government and for all of us worldwide.”

Since 2004, HIV-related deaths have fallen by 73 percent worldwide. But 21 countries so far have recorded an increase in new HIV infections since 2025, according to UNAIDS.

Remilekun Peregrino, program director at the Aurum Institute, an African health organization focused on reaching vulnerable communities, is seeing this crisis in action. The door-to-door visits and rallying of people to seek care has stalled in places such as the Democratic Republic of Congo.

“Fewer people are being tested so fewer people are being captured early,” Peregrino said, adding that this is leading to more cases of advanced HIV disease. Some people, she added, have also stopped being able to access their antiretroviral therapy (ART) to suppress the virus and are falling sick.

Eroding Trust

Without these grassroots-level groups, detection and treatment of HIV are impacted—but so too are decades of trust, peer networks, advocacy, and community leadership that go beyond health.

Community clinics and spaces, such as those run by the Tajikistan Network of Women Living with HIV, Positively UK, the Group for Prevention of AIDS in Brazil, and Buddies Society of Ipoh in Malaysia, often provide more than health care services. They also offer a sanctuary free from stigma, a place of mental health support, and a connection to a like-minded community. Groups such as ACT UP in the United States, Treatment Action Campaign in South Africa, and the National Empowerment Network of People Living with HIV and AIDS in Kenya (NEPHAK), have successfully campaigned for better laws and access to drugs.

While amfAR’s data cites only three organizations that closed directly as a result of PEPFAR’s funding cuts, Sherwood warned this is an extreme undercount. The report only reached a small percentage of PEPFAR implementing partners—and those that have closed were unable to respond to the survey.

At the International AIDS conference this year, the dominant topic was finding the funding to maintain the gains made and to get the innovations recently brought to market to communities.

“The scientists have done their job,” said Byanima, referencing the likes of lenacapavir: a long-acting antiviral medication that was recently recommended by the World Health Organization but is yet to be made widely available. Such innovations mean that the global goals of ensuring 95 percent of people living with HIV know their status, receive ART, and achieve viral suppression, are possible—but cutting off community funding places a large stumbling block in the way.

“We need strong community systems to get from innovation to communities,” said Thea Willis, equity advisor of the Community Rights and Gender Department at the Global Fund.

To Preserve the Decades of Community-Led Power

With fewer resources at their disposal, community organizations globally are scrambling to maintain services.

Thiago Jerohan Albuquerque da Cruz, an activist and former project advisor at Brazilian HIV NGO Gestos and UNAIDS, is choosing to see the moment as a time to innovate. “We have the opportunity to push it forward, to create new responses, to create new methodologies, and to not let this go behind,” said da Cruz, who also lives with HIV.

For Byanima, that means going back to grassroots movement building and knitting many movements together. “We have to strengthen the alliances that have always driven this progress,” she said. “Apartheid wasn’t won by NGO checks. It was won by people’s movements.”

For Amaranta Gómez Regalado, a social anthropologist and HIV prevention activist, a key step is ensuring that community members are in leadership positions. “We need to ensure that sex workers, people living with disabilities, people living with HIV, LGBTQ+ people are leading the movement,” she said.

But it’s not just on the community to take action. Willis believes as the global health sector refinances amid the loss of US funding, it should do so with specific budget lines for community. “We need to do it so that it puts community systems as the central infrastructure, not an add-on, not the nice to have, not short-term delivery,” she said.

This could be through social contracting or by expanding health insurance policies to encompass community-based organizations, according to Willis.

But for this to happen, governments need to change the way they see communities, said Peregrino. “They fail to see how useful [communities’] insights are in terms of sustaining the gains or any new approach when it comes to new technologies or new innovation because communities actually are the ones that own any intervention,” she said.

The Aurum Institute is working with communities to develop advocacy plans to use with local companies and governments to ask them to fill the US funding gap..

Despite the battle ahead, da Cruz remains positive that communities can organize to claw back the gains made in HIV. “Together we can build a response, and we can show that yes, we’re going to make a change,” they said.