I recently wrote about how difficult it was to change my HIV treatment. Better options existed, yet reaching them required a struggle that should never have been necessary. I have been thinking of my own personal experience as I have been following the debate about the future of UNAIDS. Scientific progress can change our lives, but only when the systems around us make that progress available.
I have lived with HIV since 1995. I know how much has changed. Effective treatment allows people to live long lives. Prevention options now include long-acting medicines, and a person on treatment with an undetectable viral load does not transmit HIV sexually. We still do not have a cure that can be offered to people living with HIV. Sustaining access to prevention and treatment remains essential. WHO HIV and AIDS fact sheet
The scale of that responsibility should prevent any complacency. An estimated 41 million people were living with HIV in 2025. Around 1.2 million people acquired HIV that year, and 570,000 died from AIDS-related illnesses. Behind those estimates are people who should have had the opportunity to live, receive care and plan a future. UNAIDS global HIV statistics
This is why I believe the HIV response needs a strong UNAIDS Joint Programme, bringing together its co-sponsoring organisations and a dedicated Secretariat. Their work must evolve. Their responsibilities must be clear, and their performance must be scrutinised. But the case for changing how they work cannot rest on an assumption that their collective contribution will survive simply because individual functions have been reassigned.
What UNAIDS meant to us in Belize
When I was living in Belize, there was no national network of people living with HIV when we began coming together to discuss establishing one. We wanted to organise and strengthen our voice in decisions about our lives. The UNAIDS country office supported us in that process.
I remember that support when I hear the language of institutional restructuring. Before we were an established network, we were people trying to find a way to be heard. We needed relationships that could help us carry our concerns into the national response. UNAIDS worked with us as we developed that collective voice.
Our advocacy concerned matters as concrete as treatment options and the ability to monitor our health. We were organising in a context where viral load testing was not available to us. Building a network helped us make those needs visible and press for improvements. The work belonged to people living with HIV, alongside the partners who supported us. UNAIDS helped create the conditions in which we could organise and advocate more effectively.
Communities bring knowledge, leadership and determination. Institutions should support that leadership and help remove the barriers that prevent it from being heard. In my experience, UNAIDS offered that kind of relationship. We could reach out, explain what was happening and receive support to act.
I do not expect every person's experience of UNAIDS to have been the same. Mine is a reason to take its community relationships seriously when assessing its future. Another organisation could provide some of that support. Before responsibilities are transferred, however, communities deserve to know where they can turn, who will respond and whether that person has the authority and resources to help.
The community trying to establish a network should not have to navigate a complicated UN structure to discover which agency now considers its concerns part of its mandate.
Financing reflects political choices
The financial pressures facing the HIV response extend across international development. Preliminary OECD figures show that official development assistance from its Development Assistance Committee members fell by 23.1% in 2025. UNAIDS reports that international resources for HIV declined by 18%, even as domestic HIV funding increased. Those are figures for the wider response, not the UNAIDS Secretariat's budget. OECD development assistance data, UNAIDS financing figures
At the same time, global military expenditure reached US$2.887 trillion in 2025, increasing in real terms for an eleventh consecutive year. These figures do not describe identical groups of governments or prove that each aid cut financed a weapon. They do show that the world's capacity to mobilise public resources has not disappeared. SIPRI military expenditure research
I find it deeply troubling that sustaining lives so often requires us to beg for resources, while enormous military expenditure is treated as a necessity. I want the security of a person who needs uninterrupted HIV treatment to matter in those political choices. I want preventing illness and protecting human dignity to carry weight when governments decide what they can afford.
Financial constraints require difficult decisions. They also require scrutiny of what is being counted. A smaller institutional budget is an incomplete measure of efficiency if countries must recreate coordination elsewhere, communities lose accessible support, or unresolved gaps make other investments less effective. Those possible costs belong in the assessment of reform.
Why the Joint Programme matters
HIV reaches across the boundaries that institutions use to divide their work. A person may need treatment while also facing a punitive law, violence or exclusion from services. A health intervention can be clinically effective and still fail to reach someone whose circumstances make accessing it unsafe.
The Joint Programme brings together mandates that address different parts of this reality. WHO leads the health-sector response and contributes standards, guidance and support for quality care. UNDP works on governance, legal environments and human rights. UNFPA connects HIV with sexual and reproductive health, while UNODC works on HIV among people who use drugs and people in prisons. Their expertise and institutional relationships are part of what UNAIDS brings to the response. WHO's role, UNDP's role, UNFPA's role, UNODC's role
The point of bringing these organisations together is to make their work answer to a shared HIV strategy. The person facing several barriers needs those responsibilities to connect. Separate commitments from different agencies do not, on their own, establish who will address a gap between them or resolve a disagreement about priorities.
A functioning Joint Programme should make that responsibility explicit. Co-sponsors must contribute through their own mandates and budgets, take responsibility for agreed results and work with national institutions and communities. The Secretariat needs to connect those contributions, identify what remains unresolved and maintain attention to the response as a whole.
Supporting this model does not require freezing its composition or working arrangements. The revised model already distinguishes six lead co-sponsors from five affiliate co-sponsors. The relevant question is how that arrangement serves countries and communities, and whether each participant can deliver its agreed contribution. PCB decisions on co-sponsor roles
The case for retaining both components was explicit in the 2025 report of the High-Level Panel on a resilient and fit-for-purpose UNAIDS Joint Programme, which I co-chaired. We recommended a smaller, focused model retaining the Secretariat and co-sponsors through 2030, warning that removing either could weaken the Joint Programme. This was a recommendation for reform made before the Secretary-General's September 2025 sunset proposal. High-Level Panel final report, recommendation 1.1
Why a dedicated Secretariat remains necessary
The argument for the Secretariat begins with responsibility. Someone must have an explicit mandate to consider whether the combined response is reaching people, where it is failing and what needs to change across institutional boundaries. That work requires staff, expertise and sustained relationships. It cannot depend entirely on what individual agencies can spare after meeting their other obligations.
Research on international institutions helps explain why. In a study of UNAIDS and the Global Environment Facility, Erin Graham examined how organisations can agree to coordinate while continuing to protect their own resources and autonomy. She argued that coordination requires administrative capacity and consistent support from Member States across the participating organisations' governing bodies. This is also a responsibility for governments: the commitments they make within UNAIDS must be reinforced in the other institutions they govern. Graham, Global Policy, 2017
In June 2025, the UNAIDS Board identified the Secretariat's core functions as leadership and advocacy, convening and coordination, accountability through data, targets and strategy, and community engagement. Addressing inequalities was to run across all of them. These are connected responsibilities. 56th PCB decisions, decision 8.3
Community relationships can reveal a barrier that routine reporting misses. Data can establish its scale and help direct attention towards people who are being excluded. Advocacy can bring that evidence into political discussions. Coordination is needed to turn agreed priorities into action across the organisations responsible. The 2026 transition working group's interim report also recognises that these functions reinforce one another. Transition working group interim report
A plan that distributes them among several organisations needs to explain how those connections will continue. It must identify who holds the overall responsibility, who can bring the relevant organisations together and where communities can raise concerns when the response fails them. Calling an arrangement a coordinating hub will not resolve those questions unless its mandate and resources make coordination possible.
The Secretariat also contributes evidence used beyond UNAIDS itself. MOPAN's 2023 assessment recognised the authority of its epidemiological reporting and the importance of HIV data for partners including the Global Fund and PEPFAR. Shared evidence helps institutions make decisions on the same basis and provides a means of examining whether commitments are being met. MOPAN assessment of the UNAIDS Secretariat
That wider value was expressed plainly at a UN General Assembly event reported on 24 September 2026. Julia Martin, the Global Fund's Head of Strategy, said: "The Global Fund depends on UNAIDS." Her statement is a partner's assessment, and it points to something reform must examine carefully: the Joint Programme's contribution to the effectiveness of institutions with much larger financing roles. UNAIDS account of the September event
The political dimension matters just as much. Scientific evidence cannot, by itself, make a government willing to address criminalisation or protect an unpopular population. The response needs a dedicated institution able to keep those issues on the agenda, work with communities and support difficult dialogue. Other UN organisations also defend human rights. The value I want preserved is the sustained focus on how those rights determine the HIV response, connected to the joint capacity to act.
Recent independent evidence supports that concern without excusing the organisation's weaknesses. The evaluation of the Joint Programme published in September 2026 found continuing value in its convening, data and work with communities, including in politically sensitive settings. It also identified duplication, unclear responsibilities and difficult relationships between the Secretariat and co-sponsors. Its findings were primarily qualitative, and limited resources prevented a robust contribution analysis. It cannot tell us how many lives UNAIDS alone has saved or prove that every aspect of its current structure is necessary. Independent evaluation of the Joint Programme
I take both sides of that assessment seriously. The weaknesses require clearer responsibilities and accountability. They also make it essential to examine whether a proposed alternative would actually coordinate better. Removing the dedicated centre does not, by itself, resolve competing mandates or create a shared obligation to address what falls between them.
Communities need a lasting place in governance
UNAIDS has given communities an institutional place through the NGO Delegation to its Programme Coordinating Board. That place has limits: NGO representatives participate without voting rights or the formal decision-making rights of Member States. Even so, a continuing place in the governance structure gives communities opportunities to raise concerns and challenge priorities beyond a one-off consultation. UNAIDS Board composition and rules
This is extremely important and the heart of the response because the people most affected by policy need a continuing way to influence it. Consultation is useful, but communities must also be able to return when promises have not been implemented or new barriers emerge. Their participation needs resources and an institutional basis that survives changes in leadership.
I think of the thematic segment on key populations, especially transgender people, at the UNAIDS Board in June 2023. I spoke about my experience as a trans person living with HIV. The Board discussed inequalities affecting populations whose needs can be politically difficult to name. UNAIDS account of the 52nd PCB
That discussion did not end discrimination. It created space within a formal intergovernmental process for our lives and the barriers we face to be considered. I want that space protected and strengthened. A future arrangement should be judged partly by whether trans people and other communities facing exclusion can still enter it, speak for themselves and challenge what is being done in their name.
Country ownership is essential to a sustainable response. It must include the people living in that country who are excluded from political influence. Where community organisations face hostility, an international partner with a clear mandate and established relationships can help them engage institutions that would otherwise be difficult to reach. Any transition towards stronger national systems must account for that need.
Reform must demonstrate that it can protect people
I will never argue that an institution should operate in the same way indefinitely because it was once necessary. The epidemic has changed. National capabilities have developed. The UN must adapt to those realities, and UNAIDS must be accountable for the value it adds.
The debate has also changed since the September 2025 proposal to sunset UNAIDS by the end of 2026. Official UNAIDS records describe a subsequent shift towards transition and integration, with the aim of protecting the HIV response. The Board has scheduled consideration of the transition plan for 26 October 2026. The final institutional arrangement is therefore still a matter for decision. May 2026 PCB Bureau record, 58th PCB decisions
That shift deserves recognition. It also leaves a practical question: will the chosen arrangement retain a dedicated Secretariat capable of carrying its responsibilities, within a Joint Programme whose co-sponsors are equipped and accountable to contribute?
My position is that it should. The evidence supports preserving those capacities while improving how they work. A proposal to transfer responsibilities must demonstrate that the receiving institutions have the mandate, staffing and financing to perform them. Communities need an accessible point of contact and a protected role in governance. Country-level arrangements need to reflect actual capacity and political conditions. These are obligations to establish before support is withdrawn.
The assessment must also consider transition costs, the risk of losing experienced staff and the time required to rebuild trusted relationships. A function can survive in a document while becoming inaccessible in practice. A country can retain a formal point of contact who no longer has time or resources to respond. Those are risks that a responsible plan must examine and address openly.
Integration can improve people's experience of care when services connect around their needs. It must also preserve the expertise and community relationships that make services accessible to people facing stigma. The people affected should help judge whether a change is working, alongside evidence on access, continuity and the ability to respond to problems.
Nor does the 2030 ambition remove our continuing responsibilities. Ending AIDS as a public health threat will still leave people living with HIV who need treatment and support. The High-Level Panel recognised the need to sustain those responsibilities beyond 2030. Any future institutional model must be designed with that continuing reality in mind. High-Level Panel final report
When I return to the question of UNAIDS, I return to Belize and to the people we were before we had a network. I think about what it meant to find support as we began to organise. I want people in that position today to have someone they can reach, and an institution capable of responding.
We owe that care to the people who have died from AIDS-related illnesses, including those whose opportunities to receive care were diminished by exclusion and hate. We owe it to those living with HIV now, and to those who could be protected from acquiring it. Our decisions should reflect the value of their lives.
Shame on us if we know what must be protected and allow it to disappear without securing its continuation. Reform should make it easier for people to receive care and exercise their rights. I want a UNAIDS Joint Programme, with a dedicated Secretariat, that can help make that happen and be held accountable for doing so.