47th PCB - Presentation - Agenda 1.4 - Report by the NGO Representative

Delivered by Aditia Taslim Lim, Asia and the Pacific


Good afternoon, colleagues.

My name is Aditia and, among the many things that make up my identity and my life, I have been a proud member of the NGO Delegation for the past three years. This year, our annual report to the PCB is entitled ‘Engagement, Evidence and Impact’ and is about 25 Years of the NGO Delegation to the PCB. The report is informed by a survey among our constituents and interviews with a wide range of stakeholders, sharing their perspectives on our two and a half decades’ of work. It is also informed by an extensive desk review, including of the formal minutes and Delegation communiqués from the 1st PCB meeting to date.


Before continuing, I would like to share that this report is dedicated to everyone – those still with us and those who have passed on – who has served on or supported the NGO Delegation, from the first meeting of the UNAIDS PCB to the present day. You are remembered and your contribution is acknowledged and deeply appreciated.
Back in 1995, when UNAIDS was established, the new Programme included a NGO Delegation in its governance structure - an unprecedented move within the UN system. Our Delegation has five members and five alternates from Africa, Asia Pacific, Europe, Latin America and the Caribbean and North America. To date, we have had a total of 108 Delegates from 85 organizations from across the world. The majority are people living with HIV and members of other key populations.

The 2020 NGO Report focuses on six key areas where the NGO Delegation has made a significant or catalytic contribution to the PCB,in collaboration with other PCB members, NGO Observers and wider civil society. I will discuss the six areas of contribution briefly, giving a snapshot – while more details are provided in the full report. I will also share some conclusions.

The first key contribution is that the NGO Delegation brings the face of HIV to the PCB and persistently advocates for the priority issues of communities and civil society. A fundamental role of the Delegation is to bring the lived-experience of HIV to the highly political deliberations of the PCB. Without such a presence, there is a risk of Board discussions becoming overly administrative or theoretical, without a sound understanding of its practical implications. Over 25 years, the NGO Delegation has been represented by, among others, people who are: living with HIV; sex workers; people who use drugs; gay, bisexual or other men who have sex with men; people with transgender experience; young people; women; indigenous people and people with experience in specific areas, such as migration, people in closed-settings, and SRHR. At all times, the majority of the members have been people living with HIV and other key populations. Each representative has brought their personal and professional experiences, as well as the issues and challenges of their respective constituencies. Examples of key issues that have been championed by the NGO Delegation include the Meaningful engagement of communities and civil society in the response to HIV, and the Importance of addressing the social enablers that, for communities and civil society, ‘make or break’ effective responses to HIV. Examples include gender equity, stigma and discrimination, and human rights violations.
The second key contribution is that the NGO Delegation brings evidence, profile and passion to neglected and contentious issues for the PCB. The Delegation has frequently raised subjects, which are important for communities and civil society, but which may be overlooked or regarded as sensitive. An example is HIV prevention – an issue that requires nuanced understanding of people’s lives, risks and social and sexual behaviours. A further example is key populations, such as with NGO Delegation pushing for supportive and rights-based PCB Decision Points and UNAIDS policies for sex workers and people who use drugs. The NGO Delegation has also highlighted issues that cut across communities. Examples include the “equity deficit”. Such work has been backed-up by the Delegation catalyzing ground-breaking debates and negotiations on intellectual property rights, leading to concrete decision points.
The third key contribution is that the NGO Delegation brings a regional perspective to the PCB – profiling priority issues for specific geographic areas and sociopolitical contexts, reinforcing the importance of “knowing your epidemic” and highlighting issues that might be neglected at the global level.The Delegation has highlighted fragile and emergency situations in individual countries, such as human rights abuses against people who use drugs in the Philippines and the ongoing public health crisis in Venezuela. In addition, the Delegation has drawn attention to issues that are of concern in specific regions, such as migration (e.g. a priority for Asia-Pacific); harm reduction for people who use drugs (e.g. a priority for Eastern Europe and Central Asia); HIV prevention for gay, bisexual and other men who have sex with men (e.g. a priority for the Middle East and North Africa); and SRHR for adolescent girls and young women (e.g. a priority for Eastern and Southern Africa).
The fourth area of contribution is supporting the PCB to connect the response to HIV to wider issues and processes. Here, the NGO Delegation has played a key role in moving the narrative and global response to HIV forward, by questioning “business as usual” approaches and strategizing around next steps.
Over the past 25 years, the NGO Delegation’s work has included:
• Supporting the PCB and UNAIDS to conceptualize different frameworks for the global response, from universal access to the ‘Three Ones’ and Strategic Investment Framework.
• Promoting the UN General Assembly High-Level Meetings on AIDS and resulting Political Declarations, advocating for their commitments to be inclusive and ambitious.
• Supporting the PCB’s positioning of HIV in the 2030 Agenda, including in relation to Universal Health Coverage.
In 2020, the NGO Delegation is also supporting UNAIDS' action on COVID-19 – urging that communities’ lessons and models from action on HIV are used in responses.
The fifth key area of contribution is to the effectiveness, efficiency and accountability of UNAIDS governance. Here, the NGO Delegation has been an engaged and committed member of the PCB that is willing to push boundaries in the interests of their constituencies to hold the Joint Programme and Member States accountable.
Examples of our work in this area include supporting:
• The work of the PCB Bureau
• The development of the UBRAF – such as calling for: more attention to issues like human rights and gender equality; more explicit reporting on resourcing and engagement of civil society; more refinement of indicators for meaningful engagement; and more transparency on the funding of civil society.
• UNAIDS reviews, evaluations and strategy development.
• Action on challenging aspects of UNAIDS governance .
The NGO Delegation has shown that it is willing to be transparent, and to learn from its own strengths and weaknesses. This includes that it has undergone two comprehensive and independent evaluations.
The sixth and final area of contribution is influencing the governance of other global health institutions and fostering partnerships with them. The inclusion of an NGO Delegation in the UNAIDS PCB has influenced the governance, decision-making and partnership structures of other global health institutions and initiatives. The Global Fund is an example, alongside the Boards of UNITAID and GAVI, as well as the civil society engagement mechanisms for the UHC 2030 partnership and the Global Action Plan for Healthy Lives and Well Being for All.
In conclusion, the NGO Delegation has brought 25 years of engagement, evidence and impact to the UNAIDS PCB. The Board can be proud of that history. The NGO Delegation has brought multiple, concrete results. Many discussions would not have been held and many Decision Points would not have materialized (in the same way or perhaps even at all) without the Delegation’s resolve and work. The NGO Delegation has brought communities and civil society issues such as human rights, gender equity and meaningful engagement to the heart of the PCB’s deliberations. That work has also extended beyond the issues directly affecting constituents and has helped ensure that UNAIDS is a well-governed, principle-based and accountable Joint Programme within the UN.
It is critical to note that the stability and quality of the NGO Delegation’s work has been significantly enhanced by its Communication and Consultation Facility. This entity has multiple important roles and responsibilities, including providing high-quality organizational systems and processes, as well as strong communications and institutional memory. It can also facilitate essential opportunities for members of the Delegation, to meet and strategize in-person beyond the biannual PCB meetings. However, we must also acknowledge that these important strategizing meetings are structurally underfunded and should be incorporated into the standard funding package for the support of the NGO Delegation. These invaluable capacities and assets enable the members of the Delegation (who are situated across the world and who work in a voluntary capacity) to function professionally and efficiently, with a united voice.

In 2020, the environment for the response to HIV is more complex than ever. There are ongoing challenges, such as reduced funding, punitive legal environments and shrinking space for civil society. They are compounded by evolving global crises (such as COVID-19) and are influenced by vital global movements (such as on Black Lives Matter and climate change). This highlights that the work of the NGO Delegation is far from done. As attention to HIV waivers, the voices of communities and civil society are needed more than ever – to keep HIV on the agenda, hold decision-makers to account and advocate for the needs of real people and real communities.

Going forward, as UNAIDS moves forwards with its next Strategy, the NGO Delegation to the UNAIDS PCB remains essential. It has more than proven its worth, value and impact. It must be protected, resourced and enabled to flourish in the future.

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