From India to Eswatini, Kenya to Georgia, Nepal to South Africa, people living with HIV and TB survivors warn that slogans and declarations alone will not deliver the 2030 goals. Only real people-power, funding and partnership will.
With just 54 months left until the global deadline to end AIDS and TB, community leaders from more than a dozen countries delivered a blunt message: nothing will change if people living with HIV remain mere consultees. They must be trusted to design, deliver and drive the response.
The warning came during the Naresh Yadav Memorial PLHIV Leadership Summit, part of the AIDS 2026 Affiliated Independent Event organised by National Coalition of People living with HIV in India (NCPI+), Global Network of People living with HIV (GNP+), CNS and partners around the 26th International AIDS Conference (AIDS 2026).
2030 is not just a date
His closing words cut deeper. "Nothing changes when communities are merely 'consulted.' At the UN General Assembly High Level Meeting on HIV/AIDS in June 2026, everyone was saying that 'we need to engage communities.' But nobody was talking how to do so. Nothing will change when communities are only consulted or just mentioned in declaration or in strategy papers or slogans. Everything will change when communities are trusted to lead, allowed to play a role in designing, delivering and driving the response."
We are not beneficiaries alone - we are the solution
She reminded participants that treatment works, prevention works, and community-led responses work. "I proudly say that I, living with HIV, have never transmitted the virus to anyone. I am one of the persons who is preventing HIV. Positive prevention works."
Patel’s call was practical and urgent. “What we need now is the courage to put people first. Rethink - let’s start to rethink the HIV response. Stop designing programmes for us but take us in the designing process. We are not merely beneficiaries, we are partners, leaders and part of the solution.”
Do not count the next 54 months - make the next 54 months count
She listed clear demands: rebuild trust so no one fears a health facility because of stigma; integrate HIV and TB services; protect human rights; fund what works; and listen to lived experience. "Do not count the next 54 months - make the next 54 months count. The world does not need another declaration. It needs implementation, accountability and leadership that puts people first."
Leadership that reaches where systems cannot
"Nothing about us without us," she declared. Communities understand local realities, build trust, reduce stigma, improve adherence, identify service gaps, influence policy and strengthen health systems. In Eswatini her organisation mobilises women, sensitises parliamentarians and traditional leaders, runs outreach on undetectable equals untransmittable (U=U) and TB case finding, and creates support groups that reduce isolation.
The results are measurable: more HIV and TB cases found, higher viral suppression and treatment success, lower loss to follow-up, and reduced stigma. What is still missing, Nyatsi said, is government funding for community-led organisations, recognition of people with HIV as leaders, stronger community systems, mental health services, and true integration of HIV, TB, sexual and reproductive health and social protection services.
Youth impacting change
"Viral suppression not only improves individual health outcomes but also plays a critical role in preventing HIV transmission in advancing the national 95-95-95 targets," Mishra said. The model works because young people reach other young people who formal systems often miss. She was referring to the goals of 95% of persons living with HIV should know their status, 95% of them should be receiving lifesaving antiretroviral therapy, and 95% of them should be virally suppressed. Government of India has set an even higher goal of 95-95-99, thankfully.
From emergency to sustainability
149 countries voted in favour of the Political Declaration - an achievement she credited to community pressure working alongside UNAIDS and other partners. Multilateralism, she argued, is still alive for HIV.
It is important to note that the historic first ever UN General Assembly High Level Meeting on any health issue was held on HIV 25 years back in 2001 (formally called then as UN General Assembly Special Session on HIV/AIDS).
But the next phase requires a shift. “We are in a moment of transformation… The HIV response is transitioned now. We are away from emergency. We are moving to sustainability.” People living with HIV must lead across the life course - beyond diagnosis to reproductive ambitions, ageing, disability and innovation. Lived experience is data, Anam insisted, and communities must lead with it, especially as HIV services integrate into primary healthcare and universal health coverage.
She issued a direct challenge on financing: "Everyone was talking about investment in communities… I do not think anyone talked about how they will be funded." If countries want to reduce donor dependence, they must help community networks develop sustainable business models that survive beyond external grants. Treatment innovation, self-testing and long-acting options are available; communities need the skills and market access to ensure they reach the people who need them.
It is important to note that the historic first ever UN General Assembly High Level Meeting on any health issue was held on HIV 25 years back in 2001 (formally called then as UN General Assembly Special Session on HIV/AIDS).
But the next phase requires a shift. “We are in a moment of transformation… The HIV response is transitioned now. We are away from emergency. We are moving to sustainability.” People living with HIV must lead across the life course - beyond diagnosis to reproductive ambitions, ageing, disability and innovation. Lived experience is data, Anam insisted, and communities must lead with it, especially as HIV services integrate into primary healthcare and universal health coverage.
She issued a direct challenge on financing: "Everyone was talking about investment in communities… I do not think anyone talked about how they will be funded." If countries want to reduce donor dependence, they must help community networks develop sustainable business models that survive beyond external grants. Treatment innovation, self-testing and long-acting options are available; communities need the skills and market access to ensure they reach the people who need them.
Community-led integrated health responses
Women left behind across regions
Women across Asia Pacific still face stigma in clinics, gender inequality, violence and economic insecurity. When community-led organisations are under-funded, one of the strongest forces for better outcomes disappears. Shahi’s four demands were unambiguous: meaningful involvement at every stage (not token consultation); integrated, person-centred services; elimination of stigma, punitive laws and gender inequality; and sustained funding for community-led organisations.
"We cannot expect communities to lead when they are constantly fighting for survival," Khmelidze said. Community-led monitoring produces evidence that improves programmes even when formal accountability mechanisms are weak. These responses are not 'complementary extras'; in many places they are the only trusted points of care. Long-term, flexible, direct funding and a safe operating environment are non-negotiable if the 2030 promise is to be kept, she said.
Bridging the Know–Do Gap
Community systems are essential
Community systems, she said, are essential. Communities are often the first to know who is being missed. Key and vulnerable populations face the widest gaps. Human rights and gender equality are not optional add-ons; they determine whether services are used. Integration must be practical and organised around people’s actual lives, not programme silos, says Anna.
The Global Fund’s Grant Cycle 8, she noted, prioritises greater investment in community systems even in difficult fiscal times. The requirements now are clear: sustainable financing for community-led organisations; genuine engagement in planning, budgeting and review; scaled-up community-led monitoring; stronger human rights and gender programming; and data that reveals who is still left behind.
"As we approach 2030, the question is not whether we know what works. We already do," Anna Maalsen concluded. "The question is whether we can act with the scale, focus and partnership required. If we put people and communities at the centre, we can move from evidence to equity, from access to dignity, and from knowing what works to doing what works."
With 54 months remaining, the science, the tools and the lived expertise already exist. What is still missing is the political will to stop treating communities as 'afterthoughts' and start treating them as the leaders they have always been.
published in:
