AIDS 2024 Preconference Highlights

AIDS2024, this year’s annual conference of the International AIDS Society opened with a spotlight on troubling trends. A series of preconferences took on critical topics including supporting key populations in a time of increasing discrimination; new and novel research and implementation of STI prevention and treatment, witnessing a soaring rise in incidence; and the importance of implementing new PrEP options to create more choice for people who need HIV prevention most.  

Key Populations at the Center of the Response

Breaking Barriers: Insights and Realities from Key Populations in HIV Prevention, organized by Global Black Gay Men Connect (GBGMC) and AVAC, featured the voices of speakers representing migrants, people who inject drugs, sex workers and LGBTQI+ people and the release of a new report, Making Rights a Reality: A GBGMC Roadmap. GBGMC executive director and former AVAC staffer, Micheal Ighodaro said the report challenges the “misinformation and complacency that assume the world can achieve HIV sustainability, biomedical HIV prevention progress and global health security without key populations’ leadership and insight.”

AVAC’s Cindra Feuer offered context on impending reductions in global spending on the HIV response, occurring not because resources are limited but because of waning interest. Inform your advocacy with AVAC and GBGMC’s 2023 Global HIV Prevention Roadmap for Key Populations.  

AVAC’s Kenyon Farrow presented on why researchers, implementers and community advocates can and should all play a role in shaping the PrEP pipeline, and how innovation in the pipeline should be implemented.  

Why STIs Matter

The preconference, Mobilize for Action on Sexually Transmitted Infections addressed the urgent need to confront the global spike in STI rates, particularly syphilis, gonorrhea, chlamydia, and trichomoniasis. Epidemiological data shows alarming growth in STI rates, and speakers discussed the morbidity and mortality that they’re causing, and an underfunded infrastructure for researching new diagnostics, antibiotics, vaccines and other treatments.  

Perhaps no more sobering of a statement was made than by Dr. Jeanne Marrazzo, director of NIAID, when discussing the number of global deaths from something as treatable as syphilis. “I think some of the more staggering statistics here, in addition to the sheer number of new infections, is the fact that we had in 2022 over 200,000 syphilis-associated deaths, which to me is practically medieval.”  

In addition to research for new treatments and increases in STI program funding, Alison Footman, AVAC’s senior program manager of STIs said it’s equally important to strengthen the capacity and role of community advocates in fighting STIs. 

“AVAC partners with many organizations across East and Southern Africa who are raising the profile of STI advocacy. From their guidance, we know there’s a need for community advisory boards [to be] involved in STI research. It can and will improve essential research.” 

Alison Footman, AVAC

A rigorous debate explored the question of implementing DoxyPEP, given there’s no efficacy data for cisgender women in light of fears of creating drug resistant strains of STIs from wider use of doxycycline. Strong arguments were made on both sides, but this controversy is one of the reasons AVAC recently published an Advocate’s Guide to Doxycycline to Prevent STIs. 

Cure and the Next Berlin Patient

With researchers announcing what appears to be the seventh person potentially cured of HIV following a stem cell transplant, a preconference on cure research, Towards a Truly Global HIV Cure, captured a feeling of momentum driving cure research today. Donors discussed new investments in African-based infrastructure and initiatives. Scientists explained where cure research is headed in both adult and pediatric populations. But none of these topics were more important than comments from a South African participant in the FRESH cohort trial that includes an analytic treatment interruption, one of the first in Africa, emphasizing that a strong commitment to communication was the foundation to building the trust necessary for these trials. ”Sharing strategies for communication and advocacy across the field of HIV cure research will be essential for it to advance.” 

PrEP Choice

With interim results of the PURPOSE 1 HIV prevention study of injectable lenacapavir (LEN) for PrEP among cisgender women and adolescent girls recently announced, the expanding landscape of PrEP options was the focus of Welcome to the Era of PrEP Choice. Organized by the Gates Foundation, Unitaid, USAID, and the World Health Organization, the message from this session echoed throughout the various presentations: Everyone has a role to play in expanding access to real choices for all who need and want them. Putting in place the right programs, policies and investment to deliver choices at scale and bend the curve of the epidemic utterly depends on a commitment to integrated, equitable, people-centered, and community-led approaches. See the latest quarterly update from The Coalition to Accelerate Access to Long-Acting PrEP, AVAC’s recent webinar on monitoring for PrEP choice to improve and simplify data, and the new Lens on LEN, an advocates guide explain the findings from Purpose 1 and next steps for advocacy.

Stay tuned for more highlights from AIDS 2024 and visit our curated conference webpage for new resources and ways to navigate #AIDS2024 including our roadmap.

Global HIV Prevention Advocates Call for Accelerated Timeline for Widespread Access to Injectable Lenacapavir for PrEP

A Joint Statement

Today a global cadre of HIV prevention advocates is calling for an accelerated timeline for access to the HIV prevention drug lenacapavir. Gilead, the developer of the drug, announced topline results from a large study among cisgender African women on 20 June, followed shortly thereafter with a statement about access. 

There is much to do before this twice-yearly HIV prevention option can be included in comprehensive prevention programs, and this coalition of civil society groups is calling for all stakeholders to urgently come together to apply lessons of past PrEP introduction to accelerate the timeline for this important new option to become widely available to those who need and want to use it.

“This is an incredibly important day for African women. Twice-yearly injectable lenacapavir will be an important addition to HIV prevention choices and has the potential to expand access to more women who need and want effective prevention options.”

Ntokozo Zakwe, Community Media Trust in South Africa and a member of the PURPOSE 1 Global Community Advisory Group (GCAG)

“African women need and want new HIV prevention options. We need everyone who has a role to play in bringing lenacapavir to our communities to prioritize the most progressive timeline the world has seen for rollout of a new prevention option, while collaborating with civil society and advocates to ensure introduction plans will result in uptake and impact.”

Chilufya Kasanda Hampongo of Treatment Advocacy and Literacy Campaign in Zambia and a co-leader of the Civil Society Caucus of the Coalition to Accelerate Access to Long-Acting PrEP

Leaders of the PURPOSE 1 Global Community Accountability Board (GCAG), the Civil Society Caucus of the Coalition to Accelerate Access to Long-Acting PrEP, the African Women Prevention Community Accountability Board, and the Coalition to Accelerate and Support Prevention Research (CASPR) have partnered with AVAC to identify the following actions for Gilead, regulators, normative agencies, funders and national policymakers:

  • All stakeholders must prioritize and uplift community voices and community choices for including lenacapavir in the range of HIV prevention options that offer the widest choice to the most people.
  • Gilead should prioritize and quickly share analysis of the data from PURPOSE 1 and begin submission to multiple regulatory agencies on an accelerated and parallel schedule, with the potential to add data from PURPOSE 2 (among other studies) on a rolling basis to the regulatory portfolio. At the same time, national regulatory agencies need to be ready to review the data once submitted and act swiftly in making regulatory decisions.
  • WHO must begin preparations now for including lenacapavir, once approved, in HIV prevention guidelines as swiftly as possible, in time for regulatory approval.
  • Gilead should transparently share clear plans for pricing of lenacapavir and access for communities most in need, and commit to providing enough drug to support early launch and rollout.
  • Following Gilead’s announcement last week that they are developing a direct voluntary licensing program for lenacapavir, it is imperative that Gilead grants non-exclusive licenses to multiple generic manufacturers in multiple geographies before the end of the year; that license agreements are made publicly available; and that the licenses include access to finished product based on public health imperatives, and not on World Bank country classifications or geographical location. 
  • PEPFAR and the Global Fund should work urgently with other donors and Ministries of Health to negotiate price and volume guarantees with Gilead to ensure there is a sustainable supply for the initial introduction period until generics are registered and readily available.
  • Funders, Ministries of Health, implementers and civil society partners need to collaboratively ​​design a comprehensive introduction strategy that breaks the sequential nature of traditional approaches to scale and speed up introduction. Part of accelerating speed is moving toward a parallel approach where research, implementation science, and scale-up programs are designed, funded and implemented in parallel. All stakeholders, working through the Coalition to Accelerate Access to Long-Acting PrEP, should commit to developing a robust introduction strategy ahead of regulatory approvals and WHO guidelines to ensure time is not lost.
  • Ministries of Health and policymakers must work together and with donors to ensure lenacapavir is integrated swiftly into national guidelines and prevention programs and made available to all populations for which the drug is approved and recommended.
  • Ministries of Health, policy makers and donors must work to ensure strategic demand creation and health-systems strengthening to support robust HIV prevention programs that provide a full range of HIV prevention options that allow people to choose what works best for them.
  • All stakeholders must commit to speeding long-term access to lenacapavir to trial participants and to the women in the communities that hosted the study in parallel with increasing access to a full range of HIV prevention options to those who need and want them.

Advocates know that there are many more actions that will be needed to ensure lenacapavir and other HIV prevention options are widely available. Transparency, speed, scale and cooperation are essential as we work to end HIV as a public health threat.

“We have never seen such a good outcome from an HIV prevention trial, and to see such a result first among African women is groundbreaking. Gilead listened to advocates and followed Good Participatory Practice Guidelines to include two of the populations most in need of  HIV prevention – adolescent girls and pregnant women – in the study. National prevention programs must also prioritize these populations in PrEP programs that will provide lenacapavir.”

Lillian Mworeko, ICW East Africa and a leader of the African Women Prevention Community Accountability Board

“Results like this are what we’ve been waiting for throughout decades of HIV prevention research. We know what is needed now to move this drug swiftly to communities. Civil society stands ready as watchdogs of the process and as essential partners in a successful rollout.”

Stacey Hannah, director of the Coalition to Accelerate and Support Prevention Research (CASPR) and AVAC’s director of research engagement

Results from the ongoing PURPOSE 2 study among cisgender men who have sex with men, transgender men, transgender women and gender non-binary individuals who have sex with partners assigned male at birth are expected in late 2024 or early 2025. This second pivotal study will provide data, not just for gay men, but for trans and gender non-binary people, populations that have often been ignored by HIV prevention studies. Data for PURPOSE 2, along with PURPOSE 3, 4 and 5 studies, will provide the most comprehensive range of data across populations that has been seen to date. A schematic of the suite of studies is here.

“We eagerly await the PURPOSE 2 data and hope to see similar results for the populations represented in that study who also need new choices for HIV prevention. Lenacapavir has the possibility of transforming the HIV prevention landscape and changing the lives of millions of people around the world. There must be no delays in making it available globally. Now more than ever, we need speed, scale and equity to ensure we get impact.”

Mitchell Warren, AVAC’s executive director.

About

  • PURPOSE 1 Global Community Accountability Board (GCAG): The PURPOSE 1 and 2 efficacy trials each include Global Community Accountability Groups (GCAGs). Members of the GCAGs include leaders in HIV advocacy and experience with engagement in research and  development. Individual trial sites also have their own community-specific community advisory board, creating multiple layers of advocacy feedback.
  • Civil Society Caucus of the Coalition to Accelerate Access to Long-Acting PrEP: Established in 2022 to ensure civil society expertise influences the rollout of long-acting PrEP options, this Caucus includes representation from many civil society groups working on longer-acting PrEP introduction. These include, but are not exclusive to, the following: African Women Community Prevention Accountability Board; AfroCAB; APCOM; AVAC; Coalition to Accelerate and Support Prevention Research (CASPR); Frontline AIDS; Global Black Gay Men Connect (GBGMC); the Global Key Population Advisory Group; and ITPC.
  • African Women Prevention Community Accountability Board: The Accountability Board led the development of the Choice Manifesto and works ensure that the manifesto is translated into reality for all women, and is composed of 12 women from 7 countries representing East and Southern African nations.
  • Coalition to Accelerate and Support Prevention Research (CASPR): CASPR is an Africa-led coalition of 13 partners, funded by USAID and supported by AVAC, working together to change how HIV prevention is pursued and delivered. CASPR activities are focused primarily in key African countries with the highest burden of new HIV infections, and where biomedical HIV prevention research is ongoing or planned.
  • AVAC: AVAC is an international non-profit organization that provides an independent voice and leverages global partnerships to accelerate ethical development and equitable delivery of effective HIV prevention options, as part of a comprehensive and integrated pathway to global health equity.

GPP Body of Evidence Webinar Series

Good Participatory Practice Guidelines have been shaping and improving clinical research since 2007. They provide a global reference guide for ethical and effective stakeholder engagement, helping ensure the priorities of trial participants and their communities are centered in clinical trials and broader research agendas.  

However, GPP implementation is far from easy—it looks different in every context, outcomes can be difficult to quantify, engagement work is often seen as secondary to clinical processes, and therefore, undervalued and under-resourced. 

To help solve for this, last year AVAC introduced the GPP Body of Evidence, a new resource that brings together a set of tools highlighting the value of GPP, as well as the nuts and bolts of how to get it done.  

Now join us for a series of webinars in collaboration with The Global Health Network, Wellcome Trust, and WHO, to analyze the current state of GPP and discuss areas of growth and further development as we chart the way forward.

It’s Not Just about the Trial: GPP from discovery to delivery in TB research

GPP enhances every stage of the research lifecycle. In this webinar, our partners at TB Alliance, SMART4TB, and THINK will shared experiences, lessons learned, and innovative approaches in integrating GPP at the organizational, network and situational level, from drug development through delivery.

Moderators:

  • Stacey Hannah, AVAC
  • Dr. Michele Tameris, University of Cape Town

Panelists:

  • Stephanie Seidel, TB Alliance
  • Erica Lessem, SMART4TB
  • Masingita Lambane, THINK

Recording / Stephanie Seidel Slides / Erica Lessem Slides / Masingita Lambane Slides

The GPP Body of Evidence: GPP Monitoring and Evaluation Frameworks, REAL and REAL2

GPP is an essential part of clinical trials research, and an ethical imperative to creating equitable and effective clinical trials. GPP is created by and for communities, so it necessarily looks different and takes multiple forms in different cultural contexts. This kind of responsiveness is inherent to GPP, but it also makes it difficult to measure and evaluate.

In this webinar, we learned from the Realist Review of Community Engagement and the REAL2 review of participatory research that both examined frameworks for evaluating community engagement efforts, as well as the Global Health Network’s new course on evaluation, and other evaluation efforts in the field of GPP.

Moderator:

  • Jessica Salzwedel, AVAC

Panelists:

  • Alun Davies, The Global Health Network
  • Sassy Molyneux, KEMRI-Wellcome Trust
  • Dr. Robin Vincent, Oxford University

Recording / Alun Davies Slides / Sassy Molyneux Slides / Dr. Robin Vincent Slides

Advocates’ Guide for PPPR

Pandemic Prevention, Preparedness and Response in 2024

If you’re having trouble making sense of all of the initiatives around pandemic prevention, preparedness, and response (PPPR) this year, don’t worry—you’re not alone! This Advocates Guide provides a reference for the relevant information all in one place. The contents explain the major initiatives, key dates for involvement, how to get involved and make sure your priorities are heard by decision makers.

Avac Event

Responding to Project 2025’s Threats to Science, Rights and Resources

Project 2025 is part of an ongoing multi-pronged backlash to the sexual and reproductive health, gender and LGBTQ+ movements. This has serious implications for both domestic and foreign policies and programs for our communities and beyond. Building on the experience of the HIV movement in fighting these same far-right forces, this webinar discussed potential responses through the lens of HIV affected communities and programs.

Speakers:

  • Sean Cahill, The Fenway Institute
  • Aleksei Lakhov, EuroNPUD
  • Will Ramirez, Southern AIDS Coalition
  • Beirne Roose-Snyder, Council for Global Equality
  • Olabukunola (Buky) Williams, AKINA MAMA WA AFRIKA

Moderators:

  • Anne-christine d’Adesky, Stop the Coup 2025
  • Allan Maleche, KELIN

Co-sponsors:

  • AVAC
  • European AIDS Treatment Group
  • EuroNPUD
  • The Fenway Institute
  • Funders Concerned About AIDS
  • GSSG Foundation
  • KELIN
  • Southern AIDS Coalition
  • Stop the Coup 2025

Recording / Slides / Resources / Chat

Pride and a Transnational Anti-LGBTQ+ Reaction

For five decades LGBTQ+ communities and their allies have come together in June to celebrate Pride, to demand recognition of our human rights, and to honor Queer lives. It was movement that ignited out of a climate of fear and ignorance, one that de-humanized trans people and same-gender loving people and made possible their continual persecution.   

As we mark the 54th anniversary of the New York City Stonewall Uprising of 1969, we celebrate the diversity and resilience of LGBTQ+ communities around the world and we must call out the transnational anti-LGBTQ+ reaction that is propelling gay-hate legislation, systemic violations of human rights, and violence against Queer people in countries across Africa, Asia and the US.  

Read on for details on an important advocacy movement against the anti-LGBTQ+ legislation in Uganda, a new podcast capturing the highlights and personal story of one advocate’s work, and the work of a cross-country collaboration strengthening advocacy for key populations.  

New Report

UNWANTED, OUTLAWED AND ILLEGAL: THE CRY OF LGBTIQ+ UGANDANS

It’s been one year since the Ugandan legislature passed one of the most draconian gay-hate laws in the world, the Anti Homosexuality ACT (AHA), which has since been approved by a Ugandan court ruling, now on appeal. The AHA intensifies the criminalization of LGBTQ+ people, including up to life imprisonment for consensual same-sex conduct, and even the death penalty in certain circumstances. A new report by the Strategic Response Team (SRT), UNWANTED, OUTLAWED AND ILLEGAL: THE CRY OF LGBTIQ+ UGANDANS, documents evictions, arrests, imprisonment, forced anal exams, and community violence against LGBTQ+ people since the passage of AHA. 

New Podcast

PxPulse: The Advocacy Chronicles

In a new edition of PxPulse: The Advocacy Chronicles, Allan Mwasa of SMUG International in Uganda discusses the Anti-Homosexuality Act (AHA), rising violence against LGBTQ+ communities in Uganda, how advocates are organizing, and what allies can do now. A donation to SMUG supports the work of the Strategic Response Team documenting civil rights violations and intensifying persecution of LGBTQI+ Ugandans. Click here to donate to SMUG. 

On the Radar

The Key Population Trans National Collaboration (KP-TNC)

And follow the work of the Key Population Trans National Collaboration (KP-TNC), a cross country collaboration strengthening advocacy for key populations. Working in Ghana, Kenya, Malawi, Nigeria, South Sudan, Tanzania, Zambia and Zanzibar, the KP-TNC strengthens relationships between KP-led organizations and development partners, regional organizations, the African Union, PEPFAR, The Global Fund and country governments, and develops strategies to advance advocacy for global health equity at large, and for HIV prevention and treatment among key populations. 

This moment requires global solidarity to push back against the lies, prejudice and discrimination that imperil LGBTQ+ people everywhere. Here’s to a powerful Pride! 

PxPulse: The Advocacy Chronicles with SMUG’s Allan Mwasa

On this episode of The Advocacy Chronicles, we’re speaking with Nsubuga Allan Mwasa, a Ugandan activist, clinical psychologist and an advocate for mental health and LGBTQ+ rights. Allan serves as Strategic Initiatives Manager at Sexual Minorities Uganda, or SMUG, which has been at the forefront of the fight for LGBTQ rights, often facing severe challenges including legal battles and violent opposition.

Despite these challenges, SMUG continues to advocate for the fundamental human rights of the LGBTQ community. It does this through legal action, public awareness campaigns, and international advocacy. SMUG is also part of Convening For Equality Uganda, or CFE, a coalition of civil society groups dedicated to challenging Uganda’s Anti-Homosexuality Act. The Anti-Homosexuality Act (AHA), signed into law in May 2023, significantly increased discrimination and violence against the LGBTQ+ community. Despite widespread international condemnation and ongoing legal challenges, the law was upheld by the Constitutional Court in April 2024. Petitioners have since filed an appeal to the Supreme Court seeking to overturn the law, which remains one of the strictest in the world, including life imprisonment and death penalty for certain offenses.  

Listen

Resources

Follow the Conversation at Convening For Equality Uganda’s Social Media Accounts

Avac Event

The GPP Body of Evidence: GPP Monitoring and Evaluation Frameworks, REAL and REAL2

GPP is an essential part of clinical trials research, and an ethical imperative to creating equitable and effective clinical trials. GPP is created by and for communities, so it necessarily looks different and takes multiple forms in different cultural contexts. This kind of responsiveness is inherent to GPP, but it also makes it difficult to measure and evaluate.

In this webinar, we learned from the Realist Review of Community Engagement and the REAL2 review of participatory research that both examined frameworks for evaluating community engagement efforts, as well as the Global Health Network’s new course on evaluation, and other evaluation efforts in the field of GPP.

Moderator:

  • Jessica Salzwedel, AVAC

Panelists:

  • Alun Davies, The Global Health Network
  • Sassy Molyneux, KEMRI-Wellcome Trust
  • Dr. Robin Vincent, Oxford University

Recording / Alun Davies Slides / Sassy Molyneux Slides / Dr. Robin Vincent Slides

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.

Avac Event

Using the COMPASS Campaign Advocacy Assessment Tool (C-CAAT) to assess the effectiveness of advocacy campaigns

This webinar is for all COMPASS coalition members, partners, stakeholders and individuals taking on advocacy in various fields.

By the end of the webinar participants are expected to have an improved capacity on how to reflect on advocacy outcomes (positive and negative) individually and collectively with relevant stakeholders and partners; enhanced ability to identify, describe and document advocacy outcomes in a clear and structured manner; and an improved capacity to identify follow up actions/tactics needed to achieve the advocacy goal or respond in the event of a setback.