Even a baseline level of meaningful civil society engagement within international for a will do

We cannot build effective health infrastructure by erecting barriers to civil society and community leadership.

By Sam Rick, Multilateral Engagement and Pandemic Preparedness Advocacy Specialist at AVAC

From the beginning of the global HIV/AIDS response movement, often before governments and policymakers became engaged, civil society and communities have led the charge. In addition to providing direct prevention and treatment services – particularly to those often excluded from the health system due to discrimination, stigma, affordability, and physical access barriers – civil society organizations (CSOs) serve crucial roles holding governments and policymakers accountable, leading activists to demand essential services, and building trust within the community. 

This legacy is felt in the operations of the President’s Emergency Program for AIDS Relief (PEPFAR) and the Global Fund to Fight AIDS, TB, and Malaria (GFATM). Both give civil society and affected community groups explicit roles in their governance and operation and provide direct funding to support their efforts or build capacity where needed. These programs have contributed to the growth of CSOs across HIV-burdened countries and increased recognition of the impact that strong civil society and community engagement can have on health outcomes. They support government program implementation by monitoring delivery at the local level, use their knowledge and expertise of hard to reach populations to inform program design, and urge public and private partners to act on emerging issues where political will and commitment falls short. The transformative impact of strong CSO and community engagement is the most important and enduring lesson from the global HIV/AIDS response.

Despite the hard-fought battles to secure the legitimacy and recognition of the baseline requirement of civil society engagement in the HIV/AIDS response over decades, new initiatives in other health areas have failed to meaningfully build upon existing engagement mechanisms and fully integrate CSOs as an essential driver of policy and programming. While some initiatives have opened up limited room for CSO engagement, the space at the table has only been secured after public criticism and organized campaigns. Advocates continue to be forced to have the same fight over and over with each new program or fund or secretariat, fighting to secure the absolute minimum of two voting seats and consultation before decisions are made. 

This is not a complete surprise. Globally, civic spaces are shrinking as global anti-rights movements are gaining momentum. Growing insecurity in the wake of international conflict flare-ups gives policymakers justification for rationalizing the limitation of meaningful civil society engagement. This dynamic has plagued international negotiations that had previously instituted meaningful engagement structures, including in the scaling back of civil society representation at the World Health Assembly, refusal to sanction a formal engagement mechanism for UN High Level Meetings, continuously dismissed requests for even observer status during Pandemic Accord negotiations, and hostility toward civil society and community advocates at international fora such as ICASA. For many governments, the global circumstances necessitate bypassing consultation and opting for rapid, decisive action, resulting in severely missed opportunities to improve health outcomes and program effectiveness. Beyond just a more limiting environment, the fiscal environment is shrinking as well, and meaningful engagement is costly. Bringing people to the table and giving them the space to truly influence decisions takes time and effort. Gathering wide input can often change scope and plans, sometimes throwing champions of a given initiative back to the drawing board.

Yet the cost of doing business and delaying start up in order to be sufficiently inclusive is an essential investment – what good is it to get money out the door quickly if it doesn’t go where it is needed? If services aren’t used, products expire, and disease spreads further? The short-term trade-offs of meaningful engagement are real, but they can be mitigated. We have over 20 years of experience to build on and leverage, and civil society and community advocates have decades of expertise in direct global health governance and service delivery to draw from. And as anyone who has spent any time in a Global Fund board meeting will tell you, there is little basis in some of the fears governments have around open, consultative processes. They do not descend into petty squabbles or dead-ends. They do not slow action or stymy decisions – for example, the Global Fund, with three voting seats allocated to civil society and communities, was among the most agile institutions during the COVID-19 crisis.

We call on decision makers, government representatives, and multilateral institutional leaders to enshrine a baseline level of meaningful civil society engagement practices within international fora, and to fight back against the growing tide of penning in valuable and essential expertise and networks.

We have seen in the 40 years of HIV/AIDS that meaningful engagement really turns the tide where biomedical interventions have plateaued in their usefulness. Preventing, preparing, and responding to disease outbreaks necessitates population trust, understanding of regional or cultural ways of working, geographical limitations, and true community needs. We cannot build effective health infrastructure by erecting barriers to civil society and community leadership.

New issue of POSITIVELY AWARE points the way towards a more equitable future

By Kenyon Farrow

In many ways the world is entering an era of HIV prevention that many of us have spent the last 40 years fighting for— there now exists multiple options for preventing HIV that are safe, highly effective and easy to use. 2012 saw the introduction of the first ARV-based prevention option—daily oral PrEP. And over the past two years, WHO recommended, and several national regulatory agencies have approved, injectable ARVs for treatment and prevention, as well as the dapvirine vaginal ring.  

While these advances are something to celebrate, this is far from the end of the road. Technological gains only go as far as people’s awareness of them, desire to use them, and access to them. And this is where we — as a public health community and as a planet of humans — struggle. Just like with the first ARV therapies in the mid 1990s, and the first PrEP pill for prevention a decade ago, we’re now four years into the FDA approval of the first long-acting ARV therapy and we are several years away from scaling up these long-acting medications and truly seeing the impact they can have on the lives of people (whether living with HIV or in need of PrEP), and on the HIV epidemic itself.  

It takes the HIV response far too long to move these innovative inventions to the point where they become medical miracles, experienced by everyone who needs and wants them, regardless of race, ethnicity, national origin, religion, sexual orientation, gender identity, sex assigned at birth, pregnancy status or income. 

There is a new special issue of the magazine POSITIVELY AWARE, co-edited by Kenyon Farrow, AVAC’s communications director, and Jim Pickett, AVAC’s senior advisor and lead of the Choice Agenda, that explores the impact of long-acting injectable treatment and PrEP. The articles, including a piece co-authored by John Meade, AVAC’s senior policy manager, and Danielle Campbell of PrEP in Black America and longtime AVAC partner, speak to the humans involved in downstream research, and what their experiences as patients, researchers, advocates and medical providers of long-acting treatment and PrEP teach us about how these products could be transformative. These stories make clear how far we still have to go to change our health systems so that they can meet their maximum potential. 

AVAC will continue our work to advocate for global equity in access to prevention and treatment in all their current and future forms. We celebrate this issue of POSITIVELY AWARE as one collection of voices helping to point the way towards a more equitable future. 

New COMPASS Governance Structure to Accelerate HIV Policy and Advocacy

Pangaea Zimbabwe selected as new Secretariat

AVAC and Pangaea Zimbabwe are thrilled to announce Pangaea Zimbabwe’s new leadership of the Coalition to build Momentum, Power, Activism, Strategy & Solidarity (COMPASS) Africa, a historic milestone in the development of innovative models for power-sharing in coalition and an important step toward decolonizing global health.

Launched in 2017, COMPASS Africa is a civil society coalition with 29 organizations working in three countries as well as regionally and globally, using data-driven advocacy to improve the HIV response with high-impact campaigns. Its achievements to date have set new standards for mobilization and advocacy, improving laws and policies, increasing investment in programs, elevating the leadership of affected communities in the HIV response, and holding all stakeholders to account for targets, commitments and impact.

In December 2023, Pangaea Zimbabwe signed a new two-year, $4.9 million grant agreement with the Bill & Melinda Gates Foundation as the new secretariat of COMPASS Africa. For the first 6 years, AVAC served in this role, and worked with a coalition-wide governance committee to develop a clear transition plan for COMPASS to be led by African civil society organizations.

“Since 2017, we’ve been breaking new ground under COMPASS Africa. We’ve expanded our networks and brought together the superpowers of new and seasoned advocates who have diverse strengths and have joined together to develop and share technical expertise and winning strategies,” said Imelda Mahaka, executive director of Pangaea Zimbabwe. “This is a foundation of collaboration, knowledge-exchange and trust that can and will accelerate innovative advocacy under African leadership. We are so proud to take this step with AVAC and with support and collaboration of the entire consortium.”

COMPASS Africa supports coalitions and organizations based in Malawi, Tanzania, the United States and Zimbabwe, and COMPASS Africa members are currently leading more than two dozen active campaigns to advance HIV prevention and treatment. 

“From its founding, COMPASS Africa pursued a vision of collective power and shared decision-making that planned for a future in which an African-based organization would assume leadership as a vital step to sustaining this essential work,” said Mitchell Warren, executive director of AVAC. “The communities who are most affected by HIV uniquely understand their context, challenges and opportunities—their leadership is essential to developing solutions that work. With inclusive governance structures formalized, including Pangaea Zimbabwe as the new secretariat, that leadership is in place, and we are excited that AVAC will continue to be part of the coalition in its new form.”

“As planned from the inception of COMPASS Africa, coalition members are taking their highly successful model to the next level. We are jointly investing in the long-term success of African leadership because it is absolutely essential to breaking cycles that perpetuate inequity and that stall progress in the HIV response,” said Justine MacWilliam, senior program manager and COMPASS Africa partner at AVAC. 

Along with the handover of the secretariat from AVAC to Pangaea Zimbabwe, COMPASS Africa has developed a new governance manual strengthening operating structures for the growing coalition. AVAC will continue as a COMPASS Africa sub-grantee and technical partner focused on advocacy strategy and tactics, including ensuring community priorities are influencing global-level HIV policies, funders and programs.

“This effort put a premium on creating structures to deepen and sustain transparency, accountability, effectiveness and continuing growth within the coalition. COMPASS has a track record of remarkable achievements, this new leadership structure ensures we leverage lessons learned, scale up our advocacy, strengthen each other, and set ambitious goals for impacting the HIV response,” said Dr. Lilian Benjamin Mwakyosi, executive director of DARE Organization in United Republic of Tanzania and co-chair of the COMPASS Governance Working Group.

COMPASS Africa has been unparalleled in testing and succeeding with new models for transnational collaboration. The results have brought campaign after campaign that have marshalled the power of data-driven advocacy to advance community priorities and have convinced policymakers to do the right thing. With these latest innovations, COMPASS Africa is now pioneering a leadership structure that offers the field a sustainable model for decolonizing global health.

New Resources to Support Understanding of Scientific Research

We are delighted to share our new Translation Index, a resource for journalists and advocates, to help bridge the gap between scientific research and community understanding. The Translation Index offers health journalists and advocates accurate translations of commonly used and essential scientific and medical terms in 10 African languages.

Journalists and community health workers are often at the forefront of helping people understand complicated science and health terms in their own languages. Providing information in the language it will be reported minimizes errors and helps journalists reach a wider audience. AVAC is grateful for the Sabin Vaccine Institute‘s support in the development of the Translation Index.

“Since many journalists in community radios may not be highly specialized, the translation of technical science terms into vernacular languages is essential for audience comprehension. This becomes particularly relevant during crises, as witnessed during the pandemic when different radio stations provided varying names for COVID-19 in the same language.”

—Esther Nakkazi, founder of the Health Journalists Network in Uganda

Since 2012, AVAC has collaborated with health journalist associations in East and Southern Africa through its Media Science Café Program to strengthen the capacity of journalists to report on HIV prevention research. In 2020, AVAC and partners  expanded this work to include COVID-19 science. Today, AVAC partners with health media associations in Kenya, Malawi, Tanzania, Uganda, Zambia and Zimbabwe to bring journalists together with researchers, implementers, civil society, policy makers, regulators and policy makers to build relationships that will foster accurate reporting of HIV, COVID-19 and other science or health stories in those countries.
Join us, Tuesday, January 23 for a webinar, Reporting the African Science Story: Decoding scientific research to support public health in Africa where we will share highlights from our Media Science Café Program. Click here to register.

“Having a platform in Malawi for communicating science in local languages is a great innovation that will also enable more of the population to be able to follow science, research and other innovation in global and public health from a scientific perspective and participate in the discourse.”

– Dingaan Mithi, journalist and JournAIDS program manager

We hope you will visit the Translation Index and join us on the 23rd.

Remembering a Legacy and Celebrating AVAC Fellow Alumni

For over a decade, the AVAC Advocacy Fellows Program has played a role in shaping the landscape of HIV prevention by strengthening leadership skills and building a growing and evolving network of fierce and unstoppable advocates. Last year, AVAC released A Legacy of Impact: The power and reach of AVAC’s Advocacy Fellows to tell the story of the Fellows program and to share testimonies of impact from research to policy, and beyond.  

Today, on Martin Luther King Jr. Day, a day dedicated to the importance of advocacy to influence change, AVAC honors its nearly 100 Fellow alumni and applauds our most recent class which closed out their fellowship in December.  

Read on for testimonies from the AVAC 2022/2023 Fellows and explore their work in their individual pages. 

AVAC 2022/2023 Fellows in their words

Learn about Ruth’s work around the approval and rollout of the dual prevention pill (DPP) in Uganda here

Learn about Onward’s work with engaging religious institutions on adolescent sexual and reproductive health in Zimbabwe here.

Learn about Prince’s work ensuring access to injectable CAB for PrEP for trans people in Malawi here

Learn about Catherine’s work in the rollout and implementation of the dapivirine vaginal ring for adolescents and young women (AGYW) in Tanzania here

Learn about Natasha’s advocacy for the approval of the dapivirine vaginal ring and injectable CAB for PrEP in Zambia here

Learn about Peter’s work with differentiated service delivery of PrEP and expediting new PrEP tools in Lesotho here

Learn about Elizabeth’s work advocating for sex workers and people who use drugs (PUD) here

Learn about Liyema’s work on advocating and implementing the decriminalization of sex work in South Africa here.  

Get to know the full AVAC Fellows community by exploring the full alumni database and stay tuned to meet the 2024/2025 class to be announced in April! 

New Year, New PrEPWatch Resources

In 2024 we look forward to continuing to provide advocates with tools to support our collective work to ensure access to PrEP in all its forms to all who can benefit from it.  

PrEPWatch.org has grown significantly in the past year, reaching a growing number of implementers, policy makers and advocates with continually updated tools and information that are instrumental to delivering the growing range of HIV prevention options. Throughout 2023, visitors from every country in the world have used PrEPWatch.org, a one-stop online clearinghouse of data, guidelines, tracking tools and other resources to help the global community speed the delivery of every proven method of PrEP to everyone who needs it. Check out what’s new and updated on PrEPWatch.org! 

New on PrEPWatch

Modelling the Scale-Up of Injectable CAB for PrEP 

Our Biomedical Prevention Implementation Collaborative (BioPIC) teamed up with the HIV Modelling Consortium to produce this analysis of the potential impact of scaling up injectable cabotegravir (CAB) for PrEP, What can modelling tell us about the scale-up of CAB for PrEP? The findings can help implementers and policymakers understand what to expect and guide early policy decisions to maximize the impact of CAB for PrEP on the HIV epidemic. 

Country Pages 

PrEPWatch has added 35 new country pages where you can find the status of drug registration for PrEP products, data on PrEP initiations by product, country-level PEPFAR targets, and links to key policy documents and guidelines.  

The Integrated Study Dashboard  

Produced under the BioPIC project, the Integrated Study Dashboard tracks all currently known activities relating to implementation research, modelling, clinical research, and landscaping for new biomedical HIV PrEP options, including CAB for PrEP and the dapivirine vaginal ring (DVR), and has been recently expanded to include links to study results and study websites. The dashboard is updated in real time, and links to results will be added as they become available. 

More Essential Resources on PrEPWatch.org

Tracking Country Planning for Product Introduction 

The Country Planning for Product Introduction Matrix tracks key indicators for the introduction of injectable CAB and the DVR by country, including regulatory status, late-stage clinical trials and implementation research, procurement plans, and recent oral PrEP provision. 

Training PrEP Champions  

Among the most popular resources on PrEPWatch, the HIV Prevention Ambassador Training Package and Toolkit prepares potential and current PrEP users to be leaders – and “Ambassadors” – in the rollout of PrEP for HIV prevention in their communities. Developed as part of the MOSAIC project, it includes a training manual and resources for Ambassadors to use in peer outreach and community education.  

Trends in PrEP Initiations  

The Global PrEP Tracker provides quarterly updates on global trends in PrEP initiation by geography, delivery models, and more. The Global PrEP Tracker has become an indispensable resource for following the state of the field in delivering PrEP.  

We hope these tools, created through strong partnerships and joint effort, support your work to accelerate the delivery of HIV prevention options. We are always interested in collaboration to ensure needed resources are developed and up to date.  If you have information to share or resource needs, please let us know by reaching out to janki@avac.org and catherine@avac.org.  

Upcoming Webinars and Workshops You Won’t Want to Miss!

Happy New Year! We hope you had good holidays and are ready for all that we need to do in 2024. To get started, kick-off the new year with an exciting lineup of webinars and workshops that will set a foundation for our collective advocacy in the year ahead. Read on for details! 

PrEPVacc: An in-depth look at the trial, and what’s next

January 11, 9:30-11:00 am EST 

Join the PrEPVacc team and AVAC to review the PrEPVacc trial, which is testing two different vaccine candidates and two daily oral PrEP regimens. Join us to learn about PrEPVacc’s innovative study design and implementation, how the trial integrated social and behavioral science, details on the latest decision to discontinue vaccinations, and what the results mean to the field. Register here

January is Cervical Cancer Awareness Month and AVAC is sponsoring a series of webinars to help advocates who care about sexual and reproductive health and rights to understand who is impacted by cervical cancer, what it means for key populations, its intersection with HIV, and the status of treatment and prevention. Register here for topics that interest you most or the full series.   

Cervical Cancer: What, where, and prevention and treatment options 

January 11 8:00-9:00 am EST 

Register here 

Advocacy and Cervical Cancer: Voices that are creating change 

January 18, 8:00-9:00 am EST  

Register here 

Screening and Treating Cervical Cancer 

January 25, 8:00-9:00 am EST  

Register here 

Cervical Cancer Among Key Populations 

February 1, 8:00-9:00 am EST  

Register here 

Reporting the African Science Story: Decoding scientific research to support public health in Africa 

January 23, 9:30-11:00 am EST 

The Media Science Cafés bring together journalists, researchers, implementers, civil society, policy makers, and regulators to build relationships that will foster accurate reporting of HIV, COVID and other science or health stories in those countries. Learn more about this model, lessons learned and why relationships across these fields are a must for advancing HIV prevention and global health.  

Register here

African Workshop on HIV & Women 2024 

February 22-23, 8:30 am-4:30 pm EAT 

This regional workshop sponsored by the Academic Medical Education platform of Virology Education is for healthcare providers, researchers, government, industry, and community representatives to increase their knowledge of issues related to HIV and women living in Africa. Early-career investigators will also have opportunities to present their research and meet with experts. Organizers will use this hybrid workshop as a launch for ongoing participant engagement, identifying partnerships, projects and continuing collaboration.   

Regular fee deadline, February 8. 

Register here