Introduction

Official recognition of the role of communities in the response to HIV/AIDS is no longer enough. In Africa and the MENA region, participation is often formal, lacking real power. This structural tokenism undermines the effectiveness of interventions and reinforces the inequalities they are supposed to correct. It is time to move from passive representation to community co-leadership, in line with recent international commitments (UNAIDS, 2021; Global Fund, 2021).

Why does community tokenism weaken the HIV response?

Community involvement in HIV governance is too often based on a formal logic with no real impact. Tokenism, or superficial inclusion without power, feeds on consultations that render the voices of community representatives ineffective. Community representatives sometimes sit alongside institutional actors, but do not have timely access to strategic documents or budgetary information for informed participation (Global Fund, 2021; UNAIDS, 2019).

Another structural bias is the assimilation of CSOs with affected communities. Too often, community representation is delegated to institutionalized CSOs with no direct connection to the realities of key populations. This disconnect fuels a growing crisis of legitimacy. A recent study in the MENA region reports clear mistrust among IDUs, SWs, MSM, and PLHIV toward certain NGOs: lack of consultation, limited impact, lack of transparency on funding, and a sense of disembodied and top-down activism (Noralla & Achary, 2025).

This architecture of symbolic and ineffective participation prevents the identification of systemic barriers, rights violations, and programmatic inefficiencies. As long as community voices are not followed by effective access to analysis, power, and resources, they will not generate structural change.

Challenges specific to community leadership in Africa and the MENA region

In countries in Africa and the MENA region, structural factors exacerbate tokenism. The criminalization of key populations—IDUs, SWs, MSM, migrants—prevents them from organizing legally, speaking out publicly, and accessing sustainable funding (UNAIDS, 2022; WHO, 2022). These populations are sometimes represented by CSOs by default, but rarely by leaders from their own ranks.

Health governance mechanisms remain highly centralized. Few countries have put in place mechanisms where populations can co-chair, vote, or influence decisions. Representation is consultative, with no power to block or propose. This centralization consolidates institutional control over processes that are supposed to be participatory (Note on Decentralization, PNLS/IQVIA).

Access to strategic information remains difficult. The timing of dissemination, the language used, and the level of technicality make the content difficult for community actors to use. This hinders their ability to develop reasoned positions and undermines their credibility in multi-stakeholder discussions (ASF Tunisia, 2023).

Finally, the crisis of confidence between CSOs and directly affected communities is increasingly well documented. Lack of transparency, accountability, and voice, as well as poor access to services, fuel a sense of dispossession. Several participants in the MENA study mentioned above criticize the growing distance between NGOs and the people they claim to represent, to the point of questioning their legitimacy (Noralla & Achary, 2025).

 Tunisia: an example of formal inclusion without real power

In Tunisia, HIV governance bodies formally include community representatives. They are allocated seats in several national bodies, and their presence is mentioned in strategic planning documents. But this official recognition masks a reality of functional exclusion. Several recent studies highlight a gap between declared participation and real power (ASF Tunisia, 2023; PNLS/IQVIA, 2023).

Meetings are often held without prior access to working documents. Once communicated, the content remains of little use to community organizations: written in French or technical language, sent at the last minute, it does not allow for in-depth preparation. This linguistic and semantic barrier creates an imbalance in exchanges to the detriment of non-institutional actors (Revue PSN VIH Tunisia, 2023).

In addition, the procedures for appointing representatives are unclear. Several community organizations denounce a closed, opaque process that is monopolized by certain long-standing CSOs. This lack of transparency fuels growing mistrust between the populations most affected—IDUs, SWs, MSM—and the structures that are supposed to represent them. There is strong resentment among young people and those in precarious situations, who say they do not identify with the official spokespersons (RAPPORT TS ASF, 2023; ETUDE JEUNES SSR, 2024).

The obstacles are not only organizational. The lack of structural funding for community groups, the lack of technical support, the impossibility of obtaining clear legal status, and regular tensions with certain administrations block any dynamic of co-leadership. In reality, important decisions are still made in closed circles, far from the people concerned (SROI Tunisia, 2023; Note 2 Social Contracts, IQVIA).

The Tunisian case is a typical example of depoliticized participation. It shows that without redistribution of power, access to resources, and institutional recognition of community knowledge, formal presence in decision-making bodies is nothing more than an illusion. The current system reproduces, rather than corrects, the logic of exclusion.

 Clarifying the commitment: co-leadership or service delivery?

All too often, community engagement is confused with community-led service delivery or community-led monitoring. While these approaches are essential, they do not constitute participation in the sense recognized by international frameworks . Co-leadership means effective sharing of decision-making power, the right to co-determination in strategic bodies, and the power to influence policy—none of which are guaranteed by outsourcing services or isolated community monitoring (UNAIDS, 2021; Global Fund, 2021).

A frequently cited example is that of numerous community organizations in East Africa (Kenya, Uganda, Tanzania) involved in the provision of HIV services. These mechanisms have proven to be highly effective, but without access to national priority setting or budgetary decisions, their place is in the field, not at the decision-making table (UNAIDS, 2025, p. 25).

In South Africa, community collaborations have been established in rural areas to improve HIV care. Although these projects have proven effective in terms of access and adherence, they remain institutionally controlled, with communities having no say in programmatic decisions or funding (Campbell et al., 2007).

In other words, people can deliver, testify, and alert—but they cannot govern. It is this distinction between execution and co-decision that must now be made visible and unacceptable.

 5 pillars of effective community leadership

Moving from formal representation to effective community leadership requires structural change. International standards, including UNAIDS' 10-10-10 targets, set out conditions for meaningful community participation. Five pillars emerge.

1. Shared decision-making power
Communities must have voting rights and co-chairing power in strategic bodies. Inclusion must go beyond consultation and ensure the power to act. This principle is now enshrined in the Global Fund and UNAIDS, but is rarely applied on the ground (Global Fund, 2021; UNAIDS, 2021).

2. Direct, flexible, and sustainable funding.
Communities cannot lead without financial control. Direct access to core funds—without intermediaries—is essential for conducting independent advocacy, documenting rights violations, and organizing responses on the ground. Existing mechanisms are too often based on subcontracting one-off services to CSOs or technical partners. This approach reduces room for maneuver, depoliticizes missions, and prevents populations from organizing themselves into sustainable movements. True community leadership requires multi-year, non-earmarked funding focused on the priorities of those concerned (Africa CDC, 2022; DIAL COMM ITPC Compilation, 2021).


3. Access to strategic information.
Budget documents, national plans, and performance reports must be communicated in a timely manner, in simple language, with support if necessary. Without this, the community is left out of the analysis and therefore out of the action.

4. Plurality of voices
Generic "community representation" is not enough. Inclusive mechanisms are needed to ensure the participation of the most marginalized populations: IDUs, SWs, MSM/ , transgender people, and migrants. This active participation is the only guarantee of realistic advocacy.

5. Accessible accountability mechanisms.
People must be able to monitor promises, question choices, and denounce abuses. These mechanisms must be present at all levels—national, regional, local—and be well-known, public, and easily accessible.

These five pillars are neither a luxury nor a utopia. They form the backbone of shared governance. Without them, participation is just a word.

 Conclusion

Ending the HIV epidemic as a public health problem requires more than biomedical advances. As long as governance remains closed, top-down, and disconnected from reality, the inequalities that fuel transmission and access to services will remain. People living with HIV, key populations, and community actors will remain excluded from the places where decisions that affect them are made.

Establishing genuine community co-leadership is not a dream. It is a strategic imperative, based on factual observations, to strengthen the relevance, equity, and impact of the response. The standards are there. The foundations have been laid. What is still lacking is the willingness to share power, to invest in community movements, and to consider them as full decision-makers.

Sticking to a logic of symbolic representation means repeating the same dead ends. Opting for a genuine redistribution of power means building a response based on the legitimacy of experience, expertise in the field, and social justice.

 

References