Communities know how to end epidemics. We need to back them.

When activists in Africa fought for access to HIV treatment in the early 2000s, we did so with a desperation few outsiders could comprehend. We held ‘die-in’1 protests on the streets, we risked arrest, because we didn’t know if we would be alive tomorrow. Our persistence, and that of many others, changed history: medicines that once cost a fortune now come as an affordable single daily pill. Millions are alive today because communities refused to be silent.

That lesson should guide us now. Yet too often, community voices remain sidelined — treated as rubber stamps rather than as partners. In global health, experts in Geneva may draft frameworks, but it is women in rural Malawi who know whether medicines reach the clinic, or whether stigma keeps people away. When those voices are missing, policy becomes blind.

This reality was clear when Unitaid’s Communities Delegation gathered in Malawi in August this year. We met grassroots groups, health workers, implementers and officials, and what we heard was inspiring but also alarming.

At a rural clinic in Mitundu, women supported by the Coalition of Women Living with HIV and AIDS (COWLHA) spoke with clarity about their needs: access to cervical cancer screening, consistent supplies of antiretrovirals, and dignity in care. They were not passive recipients of aid but leaders, organizing support groups, and demanding accountability. Yet even as they built solutions, they faced shrinking resources. Global funding cuts mean longer lines at clinics, tests that once were free now carry costs, and patients dropping out of treatment because they cannot afford a day away from work.

These are not abstract problems—they determine who lives and who dies. That is why community voices matter.

We know from experience that inequity shapes survival. In some countries, high-quality treatment is free; in others, people with the same virus face far fewer chances of survival. Geography, not biology, decides life expectancy. That injustice is why we insist lived experience must stand alongside technical expertise.

Unitaid’s Communities Delegation shows what meaningful engagement looks like. It gives us not just a seat at the table, but a voice respected alongside governments and technical partners. Its model works because it listens to communities.

But too often elsewhere, dignity is missing. Communities are still expected to give their time for free while others are paid. Our insights are welcomed, but our labor goes unrecognized. That imbalance weakens the health response. Communities don’t just echo policy—we change it. We speak in ways that are trusted, we see the gaps others miss, and we make sure innovations actually work in the places where need is greatest.

Programs cannot be judged by glossy frameworks and ambitious targets alone. They must answer the questions communities ask every day: Do people feel safe disclosing their HIV status? Do women have the power to insist on condoms? Can patients afford to reach the clinic? If not, then the system is failing.

The future of activism depends on mentorship. Veteran campaigners remind newer members that their power lies not in mimicking technical experts, but in speaking from lived experience. Delegates are not representing themselves — they are carrying the voices of their communities into global spaces.

This exchange—elders offering hard-won perspective and newcomers bringing fresh urgency—keeps the movement alive. It ensures that when one generation grows weary, another is ready to carry the fight forward. The future of public health investment lies in the leadership of the very communities these programs are meant to serve.

Our retreat in Malawi was not all strategy and debate. There was also dancing, cultural exchange, and moments of joy. That, too, is part of the story: communities fighting for dignity and equity carry not just trauma but resilience, creativity, and hope. We are not simply beneficiaries. We are the drivers of progress.

Global health leaders say they want to “end AIDS by 2030.” That will not happen without communities at the center—not as unpaid consultants, but as equal partners with real power, fair compensation, and respect.

If we don’t push, one day we could wake up and find there is no treatment. That is why we keep going. Until everyone who needs prevention or treatment has access, there is no space for fatigue. Our work is about survival, solidarity, and justice.

Communities know what works. We have already built solutions, often with few resources and against great odds. The question is no longer whether communities can lead. It is whether the world will finally back us — with the finances, training, and resources needed — to end epidemics for good.

Nothing for us, without us!!

Wim Vandevelde is a treatment activist and liaison officer for the Communities Delegation. Diagnosed in Portugal, he accessed world-class treatment and care for free — a reality starkly different from the experience of people in many African countries. He has since spent more than two decades advocating for equitable access to care.

Carol Nawina Maimbolwa is a TB/HIV/cervical cancer advocate with many years experience in public health and community engagement. She is the Executive Director of CITAMplus, a community advocacy organization based in Lusaka, Zambia. Carol uses her lived experience with TB, HIV and diabetes, as well as working directly with affected communities, to advocate for policy change at national, regional and international levels.

Mona Balani is a HIV/TB community activist and advocate for women’s health and rights, based in Delhi, India. She is currently Program Manager at India HIV/TB Alliance.

• Grant Proposal Review Workshop: Led by Maurine Murenga, delegates reflected on how proposals must be judged through community realities, not just technical frameworks.

• Country & Civil Society Engagement (CCSE): Itumeleng “Tumie” Komanyane from the Unitaid Secretariat emphasized making investments more community-centric.

• Field Visit to Mitundu: Delegates met the COWLHA Women Support Group, who highlighted needs for cervical cancer screening and reliable medicine supply.

• Media Skills Training: David Kamkwamba from JONEHA trained participants in storytelling and technical skills to amplify community voices.