Fighting the Same Fight Again

Civil Society and Community Engagement in Global Health Initiatives
Authors: Samantha Rick (AVAC), Quentin Batreau (GFAN), Eolann MacFadden (Frontline AIDS)

Pandemic Accord negotiations have so far failed to effectively engage advocate and civil society voices. With key parts of the Pandemic Accord moving toward further negotiation over the next few years, the Coalition of Advocates for Global Health and Pandemic Preparedness calls on advocates in and around the World Health Assembly to continue to rally for meaningful engagement with civil society and community and leadership roles for both in the ongoing multilateral process for pandemic prevention, preparedness, and response (PPPR).

For decades civil society and community organizations have been recognised and legitimately engaged as vital stakeholders and leaders in the HIV response. But this principle of inclusion has been inadequately upheld in other health areas, and vitally important initiatives, including the negotiations of the Pandemic Accord, have failed to build on the success of the HIV response and fully utilize existing models and mechanisms for engagement. Without them, these efforts exclude critical stakeholders when they should integrate civil society organizations (CSOs) as a crucial driver of policy and programming. Although certain initiatives have created some opportunities for CSO involvement, organized campaigns and public outcry have been necessary to garner a seat at the table. With every new program, fund, or secretariat, advocates are compelled to engage in the same repetitive battle to obtain a minimum of two voting seats and consultation prior to decision-making.

Civil society representation at the World Health Assembly has been reduced, a formal mechanism for engagement at UN High Level Meetings has been rejected, requests for even observer status during Pandemic Accord negotiations have also been rejected, and civil society and community advocates have experienced hostility at international convenings such as International Conference on AIDS and STIs in Africa (ICASA). Preventing, preparing, and responding to disease outbreaks requires public trust, understanding of regional or cultural ways of working, geographical limitations, and the true needs of communities. We cannot build effective health infrastructure by erecting barriers to civil society and community leadership. 

It is absolutely crucial that civil society and communities band together to demand meaningful engagement in the processes that follow and refuse to permit governments and institutions from rolling back CSO access and decision-making power even further. 

We have seen throughout the 40 years of the HIV/AIDS response that meaningful engagement  turns the tide when biomedical innovations fall short of their potential because of real-world challenges. Decision makers, government representatives, and multilateral institutional leaders must enshrine a baseline level of meaningful civil society engagement practices where and when international decisions are made. As lessons from the global HIV response show us, it is possible, if not probable, that many of the outstanding issues in the Pandemic Accord could have been solved with civil society input and influence, as knowledge-brokers who bring unique insights, find solution, and foster trust where it’s needed most.

The Coalition of Advocates for Global Health and Pandemic Preparedness is a group of organizations advocating for an integrated and holistic approach to preparedness that emphasizes equity, inclusion, and synergies of multiple global health programs in advancing preparedness. We believe that all global health initiatives should be centered on the key principles of community leadership, equity, access, and human rights and that efforts to fight current epidemics and strengthen health systems are central to equitable pandemic preparedness.

The biggest lesson from the fight against HIV, TB, and malaria is that if space is not reserved for civil society, we must take it – “Nothing For Us Without Us”. Join us at the World Health Assembly or watch the recording of our side event focused on civil society engagement if you can’t make it to Geneva, and keep demanding meaningful engagement in every global health initiative.

Join us as we Commemorate HIV Vaccine Awareness Day

As we prepare to commemorate HIV Vaccine Awareness Day (HVAD) on May 18, the field continues to see some modest scientific breakthroughs, while still facing extraordinary challenges.

Avac Event

HIV, Viral Hepatitis and Sexually Transmitted Infections: Progress and gaps

13:00 – 14:30 CEST PM

Please join this webinar being held in the run up to the 77th World Health Assembly.

The World Health Organization (WHO) will launch a publication, which describes progress and gaps identified during the first two years of implementing the global health sector strategies on HIV, viral hepatitis and sexually transmitted infections (STIs) for 2022-2030.

Moderators will ask key leaders in the responses to HIV, viral hepatitis and STIs how we can increase visibility, political will and community activism to accelerate action.

Panelists include:

  • Jérôme Salomon, WHO, Switzerland
  • Jessica Hicks, World Hepatitis Alliance, United Kingdom
  • Maureen Luba, AVAC, Malawi
  • Meg Doherty, WHO, Switzerland
  • Patty Garcia, Cayetano Heredia University, Peru
  • Philippe Duneton, Unitaid, Switzerland
  • Sabin Nsanzimana, Ministry of Health, Rwanda (TBC)

The conversation will be moderated by Charles Gore from the Medicines Patent Pool (MPP) and Birgit Poniatowski from IAS – the International AIDS Society.

The webinar is organized by IAS – the International AIDS Society – and its partners, WHO, Medicines Patent Pool and Unitaid.

Avac Event

What’s Next for the Pandemic Accord? A civil society and communities perspective

13:30-15:00PM Geneva Time

This side event will feature expert panelists discussing what’s promising in the Pandemic Accord, what we expect from governments, and what’s missing for successful implementation. Our panelists come from different health areas but all have experience in pandemic prevention, preparedness, and response. We intend for this panel to also help civil society prepare for the coming year and gain capacity to meaningfully engage in advocacy around implementation of the Accord. 

This event is co-sponsored with Care and Frontline AIDS. This in-person meeting will be recorded and the recording will be posted on this page following the event.

Will the Pandemic Accord Fail to Learn the Lessons of the HIV Response?


In their statement at the 8th Intergovernmental Negotiating Body (INB) meeting, the Office of the United Nations High Commissioner for Human Rights (OHCHR) highlighted that from the HIV experience we know that if public health measures do not take human rights into account, we will leave marginalised populations behind, fail to address structural barriers to access to quality healthcare, and miss essential interventions altogether.

At the final negotiation meeting of the Pandemic Accord, Member States risk failing to learn these key lessons from the HIV response. 

Over the last two years we’ve seen the limited references to human rights further reduced with each version of the proposed Pandemic Accord text. In the revised text published in April 2024, Member States propose the Agreement is guided by the principle of ‘full respect for the dignity, human rights, and fundamental freedoms of all persons, and the enjoyment of the highest attainable standard of health of every human being’. Beyond this, key provisions including the need to develop and implement policies to respect, protect and fulfil the human rights of all people has been removed and the text fails to recognise or support the critical role of communities. 

Local communities are pivotal in advancing the HIV response, leveraging local knowledge to enhance policy execution, and reaching groups left behind by government-led responses.This is true in the HIV response, and is true in public health programs more broadly: participation from communities and civil society is crucial to minimise the gaps of public programs, ensuring that they reach all vulnerable populations, including the most marginalised. Engagement at the community level also ensures that large-scale policies are effectively translated for local contexts, reducing barriers to access and strengthening impact. To not include organisations that already have a plethora of expertise in the areas the Accord aims to help with would be irresponsible, and would be ineffective on behalf of the communities they aim to serve. The HIV response is globally recognised for its inclusion of communities in governance and decision-making and it is critical the Pandemic Accord replicates this inclusion in the implementation and governance of this instrument. 

At the final negotiation meeting, we must see Member States agree a Pandemic Accord that is grounded in human rights and supports the critical role of communities. We urge Member States to:

Download the full statement here.

Avac Event

Analysis & Impact of the Ugandan Constitutional Court Ruling on HIV Services

Please join us for a deep dive into the recent ruling on the Anti-Homosexuality Act by the Ugandan Constitutional Court, with a focus on implications for HIV programs in Uganda and beyond, and connections to the US Supreme Court Dodds decision.

Speakers Include:

  • Andrea Gillespie, Associate Director of Global Advocacy, Human Rights Campaign
  • Maureen Milanga, Director International Policy and Advocacy, Health GAP
  • Ugandan activist TBC

AVAC Fellows Program

Capability Statement

The AVAC Fellows program empowers advocates to create lasting impact within their communities and beyond. Alumni often pursue further training, lead advocacy movements, and play significant roles in shaping health policies and national strategies.

Our Work with Key Populations

Capability Statement

AVAC advocates for effective HIV prevention, supports Key Population-led research participation, fights against criminalization policies, accelerates access to innovative prevention tools, and champions broader health equity issues.

Avac Event

Just What is Discovery Medicine? And What Does it Mean for HIV Vaccine Research?

Participants joined to gain a broad understanding of Discovery Medicine including an overview of the current landscape for HIV vaccines. We also discussed what it means for HIV vaccine research and development moving forward, with a focus on community and advocacy priorities.


  • Dr. Betty Mwesigwa, Makerere University Walter Reed Project
  • Tian Johnson, BRILLIANT HIV Vaccine Discovery Consortium
  • Dr. Cathy Slack, HIV AIDS Vaccines Ethics Group
  • Dr. Sandhya Vasan, Henry M. Jackson Foundation for the Advancement of Military Medicine, US Military HIV Research Program


  • Stacey Hannah, AVAC
  • Louis Shackelford, HIV Vaccine Trials Network (HVTN) & COVID-19 Prevention Network (CoVPN)

Recording / Full Slides / Resources

Introducing Advocacy Chronicles: A new AVAC podcast takes you behind the scenes with leading advocates

AVAC is thrilled to announce our new PxPulse podcast series, The Advocacy Chronicles, featuring conversations with leading advocates who take us behind the scenes on critical issues at the forefront of global health equity. In each concise conversation, a leading advocacy champion will talk about a priority community issue they identified, the tactics they used to address it, and the wins and outcomes they achieved.   

Our debut episode of PxPulse: The Advocacy Chronicles is with Yvette Raphael, the Executive Director of Advocacy for Prevention of HIV and AIDS (APHA), and one of South Africa’s leading human rights activists. Yvette co-chairs the African Women Prevention Community Accountability Board (AWPCAB), which launched The HIV Prevention Choice Manifesto in September 2023. Yvette discusses the manifesto – a global call, developed and implemented through support from the CASPR project, for increased political and financial commitment to ensure every proven method of HIV prevention is integrated into the HIV response. She lays out why The Choice Manifesto matters, how advocates are leveraging it, and what tactics will advance its priorities.  

Find the full episode here. Follow The Advocacy Chronicles on PxPulse to hear about the issues that advocates are taking on to advance HIV prevention and what they are learning in the process. Upcoming episodes will feature champions behind campaigns to decriminalize sex work; new advocate-created platforms for ongoing engagement between government and young women; successful efforts to set targets and secure funding from PEPFAR; advocacy to challenge anti-gay hate laws and protect communities of key populations, and more!  

Subscribe on Apple Podcasts to catch every episode! 

Save the Date!

Discussing Early Results from the SEARCH Dynamic Choice Study

Join AVAC and SEARCH in conversation with Professor Moses Kamya of Makerere University to find out why the early results of the SEARCH Dynamic Choice study were some of the most exciting news to come out of the CROI meeting in 2024. The webinar will consist of a presentation by Professor Kamya, followed by a robust discussion about the role of choice in HIV prevention.

Register Here!