Breaking the chains: Supporting Community Leadership and Human Rights for a Sustainable HIV Response
Part 1
Slide 3
The topic of the NGO Delegation to the UNAIDS PCB 55th meeting is ‘Breaking the chains: Supporting Community Leadership and human rights for a Sustainable HIV response. Here we present a summary of key points from the NGO Delegation report, and we invite delegates to read the full report, which goes into much greater depth.
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We can not overcome or end the AIDS epidemic without strong and systematic community leadership in HIV responses. But its full potential is being held back.
This report of the NGO Delegation presents evidence of how the leadership of communities most affected by HIV is being impacted by shrinking civic space, attacks by the anti-gender and anti-rights movements, and inadequate funding. Based on our analysis, we offer recommendations for addressing these threats.
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The report was developed using a qualitative, mixed methods approach, which centred the voices of HIV-affected communities and builds on a number of previous NGO Delegation reports and PCB decision points. Some of the most relevant are highlighted in the full report.
The lack of funding, which delayed the start of the research, could be a standing challenge unless funding for the NGO Delegation to produce a report is protected going forward.
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The communities referred to in the report are people living with HIV, key populations, women and girls and other affected groups, depending on context.
With this in mind,
- Community-led AIDS responses are actions and strategies that seek to improve the health and human rights of their constituencies, that are specifically informed and implemented by and for communities themselves and the organisations, groups and networks that represent them;
- Community-led organizations are entities for which the majority of governance, leadership, staff, spokespeople, members and volunteers, reflect and represent the experiences, perspectives and voices of their constituencies and who have transparent mechanisms of accountability to their constituencies
There is no agreed definition for community leadership per se. Responses from the regional dialogues included
- ‘Giving voice to the people who can’t reach the policymakers and donors’ (Asia-Pacific)
- ‘Having people involved in responses that impact their lives and helping to shape those responses because we are the ones that know how the issue affects us. Not having external people make decisions on our behalf without our input’ (Western Europe and North America)
- ‘Being listened to. Having the power to sit at the table, not just be consulted.’ (Latin America and the Caribbean)
Based on these responses, we can say that community leadership goes beyond representing community members on decision-making bodies; it assumes that communities most affected by HIV have access to both the resources they need and the necessary independence to use them that will enable them to organize and to carry out work, and the accountability for this work at different levels.
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Current global Frameworks are reflective principles enshrined early on in the global AIDS response, such as the Denver principles of 1983 and the GIPA principle of 1994
The centrality of community leadership is embedded in the results and objectives of the current global AIDS strategy, the Global Fund strategy and the PEPFAR strategy presented on the slive,
Other global health frameworks, such as the WHO Health Sector Strategies on HIV, viral hepatitis and sexually transmitted infections, 2020–2030, also highlight that “[c]ommunities must be empowered and resourced to enhance their indispensable role in delivering people-centred services with strong linkages to health services, and in promoting accountability”.
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Advances in HIV prevention and treatment have transformed the response and made ‘the end of AIDS as a public health threat’ an achievable goal. However, community leadership remains a vital ingredient for the ‘last mile,’ where we see that most affected communities are still being left behind. Communities have a role to play in HIV prevention education, linkage to testing and care, access to treatment and retention in care, psycho-social support, health service and human rights monitoring and advocacy, preventing and responding to gender-based violence, addressing HIV-related stigma and discrimination, and driving a decriminalization agenda, among many other things.
The 30-80-60 targets on community leadership recognise this vital role.
Linked to these are the 10-10-10 targets on societal enablers that are critical for an effective HIV response. These targets are also a proxy measure of communities’ abilities to fully participate in the decision-making that affects their lives.
However, none of these targets is on track to be achieved by 2025 (according to the latest UNAIDS update). That is all the more reason not to abandon them. Having ambitious targets like these is important for determining what gets done and by whom. In addition, we need stronger accountability systems, including prioritised, costed work plans, M&E frameworks and systems for data collection, and financial commitments.
Part 2 / Slide 9
In this section, we look at three obstacles standing in the way of community leadership.
- Increasingly restricted civic space
- The ‘anti-gender / anti-rights’ movement, and
- Lack of adequate funding for community-led organizations
Slide 10 – restricted civic space
According to CIVICUS, in 2023, 60% of countries have obstructed, repressed or closed civic space – the highest number since monitoring began.
The report includes examples from around the world of laws being introduced to control and limit civil society activities, such as those that curtail the activities of LGBTQI+ organisations in Malawi, Ghana and Zimbabwe, among others.
Foreign agent laws in some countries in Eastern Europe and Central Asia are impacting negatively on harm reduction programmes and the ability of people who use drug networks – among others – to organise.
There are also examples of countries in Latin America (such as Nicaragua) and Asia (e.g. Bangladesh) where there is shrinking civic space, including in the context of political turmoil.
Slide 11 – anti-gender / anti-rights movements
Global Civil Society has noted that the rise of a well-coordinated, well-funded movement of state and non-state actors opposed to ‘gender ideology’ is driving a backlash on gender equality, sexual and reproductive health and rights, and the rights and safety of LGBTQI+ people, and pushing regressive and harmful policies on drugs and sex work.
Some of the Delegation’s observations on how anti-gender / anti-rights mobilisation undermines community leadership include
- A wave of punitive anti-LGBTQI legislation and sentiment worldwide, but most notorious in sub-Saharan Africa, created an extremely hostile environment.
- A rollback on CSE, SRHR and women’s rights, including in UN normative language
- Mis- and disinformation regarding the work of community-led organizations, including co-option of child protection language to support a pushback on CSE, LGBTQI rights and reproductive rights
- A tightening of drug laws, including in some places, re-criminalization of drug possession or use
- A growing attack on sex workers’ rights, with increased criminalization and stigmatization
- The development of alternative non-binding normative frameworks such as the ‘Geneva Convention’ and the use of ‘first lady advocacy’ to gain traction for its launch and implementation
- And the reinforcement of conservative gender norms and binarisms, including HIV-related stigma and discrimination
Slide 12 – Who is afraid of gender?
This study by ISDAO and Queer African Youth Network is one of several attempts by community-led organizations to monitor the rise of the anti-gender / anti-rights movements; it is described in more detail in the report
Slide 13 – Lack of sustainable funding for CLOs (1)
Funding going to community-led organisations is currently inadequate to support their work, especially in the current climate of hostility towards the communities they represent. This situation is likely only to get worse as the 2030 target of ending AIDS as a public health threat approaches and then passes, particularly if HIV is not seen as a priority in the global health and/or development architecture that follows.
Most funding for community-led organisations is project-based and tied to specific deliverables, leaving no money for strategy development, communications, partnership building, administrative staff, fundraising, and human resource management, among others.
This ‘projectisation’ exacerbates the voluntarism that has characterized the AIDS response since the beginning. Smaller organisations often experience indefinite periods of unpaid work to mobilise resources between projects. This can create mental and physical stress and burnout.
Furthermore, criteria for receiving funding (such as minimum annual budget thresholds, audited accounts, financial management systems, etc.) tend to favour larger international or national NGOs. Paradoxically, the administrative burdens associated with project-based funding (such as due diligence, compliance and reporting) can also hinder smaller organizations from delivering on their core mandate.
Slide 14 – Lack of sustainable funding for CLOs (1)
The negative impact of the barriers to accessing funding on women-, youth- and key population-led organisations is likely to continue as funding for the HIV response shifts to domestic financing, especially in a context of increasingly restricted civic space and hostility towards key population communities.
There are already huge shortfalls in funding aspects of the HIV response, such as harm reduction programmes for people who use drugs.
Slide 15 – Section divider
In this section, we look at ways to address these barriers and make recommendations for how we move forward.
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Funding for communities needs to be more flexible, responsive, context-specific and accessible. It should go directly to community-led organizations and include core funding.
The consultation also highlighted the need for communities to start seeking support from non-traditional sources of funding, some examples of which are included in the report.
While domestic financing is essential to sustain gains made in the HIV response, some ring-fenced external funding for communities should also be maintained. CLM must continue to be supported to ensure that government-provided HIV services are accessible, affordable and acceptable to all who need them.
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The Robert Carr Fund for civil society networks was highlighted by a number of community members during the consultation as ‘a lifeline’ for regional and global networks and consortia.
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As we have seen, there are strong commitments to community leadership in the global AIDS policy framework; but stronger accountability is needed to make sure these commitments are met.
Communities’ knowledge and expertise need to be valued, not sidelined as “grey literature” or “anecdotal”, and community leaders must be meaningfully involved in strategy development at global and national levels. This means starting the process early, co-creating the roadmap and listening to communities most affected by HIV.
An example described in the report is the Office of National AIDS Policy in the US, which has an open door policy for community representatives and holds regular ‘listening sessions’ to make sure the next strategy reflects the lived reality and diversity of people most affected by HIV.
Slide 19
The Rise Study supported by L’initiative and AmfAR highlighted ways in which community engagement and participation in CCMs could be strengthened and made safer for community representatives.
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In addition to financial resilience, the delegation found that to counter the anti-gender and anti-rights movement, solidarity and alliances between actors in the HIV ecosystem need to coalesce around a counter-narrative that is grounded in science and evidence. Support for mental health and mentorship of a new generation of leaders will also help avoid burnout and ensure the continuity of the work.
UNAIDS Cosponsors and the Global Fund can play a more intentional, informed, courageous and coordinated role in facilitating the building of alliances between communities and national governments and normalizing the meaningful engagement of community-led organizations in decision-making spaces, while also challenging policies and practices that threaten to undermine an effective HIV response.
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Rise and Decriminalize is an example of communities coming together to coalesce around a common advocacy agenda.
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The report offers a set of concrete and practicable recommendations in the areas of sustainable and equitable financing, centring community leadership in the HIV response, and building resilience to counter the shrinking of civic space and the backlash on gender equality and human rights. We believe these constitute the minimum investment in community leadership that is required to meet targets in the global AIDS strategy and – more importantly – to safeguard the needs, rights and priorities of people living with HIV, key populations and women and girls.
These recommendations are distilled in the decision points that the PCB will be invited to consider.