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. 

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 [email protected] and [email protected].  

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

Px Pulse: A season of listening

As we look ahead to 2024 and the vital work AVAC and partners will be carrying forward, the conversations from 2023 offer guidance and insights. Px Pulse, AVAC’s podcast on critical issues facing HIV prevention research, hosted several not-be-missed conversations in 2023 that will reverberate into the year ahead.  

From a stalled PEPFAR reauthorization to LGBTQIA+ voices fighting persecution in Uganda; from efforts to bring equity to a new global architecture for pandemic readiness to advances in HIV vaccine science and advocacy to include pregnant people in research—we hope that all of these conversations can inform our advocacy in 2024. Click on the episode for both recordings and resources.

PEPFAR at 20: Keeping the promise (23:16)

Considered one of the greatest US foreign policy and global development achievements of the century, the program has saved upwards of 25 million lives since it launched in 2003. But PEPFAR is marking its 20th anniversary while fighting for its future. LISTEN HERE.

LGBTQIA+ Advocacy in Uganda: Facing down fear and fighting for justice (24:19)

In March 2023, the Ugandan Parliament moved forward broad-reaching legislation to further criminalize LGBTQIA+ people. This podcast features Ugandan advocates and AVAC partners discussing the specifics of how these attacks have gained momentum and their ties to US-based religious extremists. The advocates discuss what needs to happen next. LISTEN HERE.

The Shape of Pandemic Preparedness is Being Decided. Now is the Time for Collective Action (15:14)

Health leaders around the world are in the midst of creating a new architecture to deal with pandemics. Chris Collins, the CEO and President at Friends of the Global Fight Against AIDS, Tuberculosis and Malaria, talks about what’s at stake, which policymakers get it already, why this year matters so much, and what advocates can do about it. LISTEN HERE.

PPPR Advocacy 101: Find out what it means to you (19:05)

Over the coming months, global leaders will make key decisions about several initiatives to prepare for the next pandemic. This podcast explores what they commit to, how much they will spend and how well these plans safeguard equity. LISTEN HERE.

Inclusion of Pregnant and Lactating People in HIV Research: What you need to know (34:28)

AVAC’s Manju Chatani-Gada takes us through conversations with a trial participant who became pregnant, researchers, policymakers and donors to understand why this population gets excluded, the impact it has and what to do about it. LISTEN HERE.

Evolving Strategies for an HIV Vaccine: One researcher explains where the field is going and why? (21:23)

Evolving Strategies for an HIV Vaccine: One researcher explains where the field is going and why? Dr. Katy Stephenson explores the implications of recent trial results, the big questions driving next generation vaccine development, and new strategies underway in early phase research. LISTEN HERE.

Happy listening—and let us know what topics you want to hear more about in 2024! 

Introducing From the Lab to the Jab: A new series of advocates’ guides

AVAC is excited to launch From the Lab to the Jab, a new series of advocates’ guides that highlight key advocacy issues to ensure equitable access to safe, effective, and affordable vaccines.

Co-created as part of our USAID-supported Coalition to Accelerate and Support Prevention Research (CASPR), with additional support from the New Venture Fund, From the Lab to the Jab issue briefs provide a roadmap for advocacy to advance the development and delivery of essential vaccines for HIV, COVID-19, tuberculosis, and other global public health threats, and approaches to ensure equitable access to these life-saving vaccines.

Go to avac.org/FromLabToJab to learn about next generation vaccine research and development; the basics of mRNA technology; initiatives that support local manufacturing; and understanding and overcoming barriers that undermine equitable access to vaccines. Each brief also highlights the advocacy needed to keep these efforts on track and in line with what communities need and want. 

Stay tuned for an invitation to join the From the Lab to the Jab Webinar in January 2024, and be part of the conversation that will use these briefs to strengthen advocacy and create a roadmap to achieve key transformational priorities in global health. 

On Transgender Day of Remembrance AVAC Announces TG ROAR 2023

By Jason Rosenberg

Today, on Transgender Day of Remembrance (TDOR), as communities across the globe memorialize trans and gender nonconforming (TGNC) people targeted by violence and state-sanctioned bigotry, AVAC honors the trans community—those lost and those among us. We are committed, now more than ever, to fight these ongoing injustices and support TGNC advocates to lead on issues facing their communities.  

Riding the momentum of the release of the No Data No More Manifesto and the Trans-Inclusivity Scorecard, AVAC is relaunching TG ROAR, a program from our larger PxROAR initiative, dedicated to supporting TGNC HIV advocates in Eastern and Southern Africa. The new eight-member cohort will campaign for trans-centered, HIV research and service delivery while addressing the social, political and economic barriers that all too often stand in the way. 

Crimes against TGNC are on the rise as are rates of HIV incidence in trans populations. TGNC face unique barriers to testing, adherence to pre-exposure prophylaxis (PrEP) and maintaining viral suppression. Without meaningful trans inclusion in advocacy efforts there will be no epidemic control.  

Learn more about AVAC’s new cohort of TG ROAR advocates here

We continue to fight for transgender rights and invest in TGNC leadership to create a more equitable and just future for all.

Announcing the Good Participatory Practice Body of Evidence

We are thrilled to announce the Good Participatory Practice (GPP) Body of Evidence, a new online clearinghouse of case studies and analyses demonstrating the power of GPP, along with tools, templates and trainings for GPP implementation. The resources we’ve gathered for this much-needed “one-stop GPP shop” can be used to show the impact of GPP to date, how it can be measured going forward, and its practical application in real-time.  

The Good Participatory Practice Guidelines have been shaping and improving HIV prevention 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.  

Over the past 16 years, the original GPP guidelines for HIV prevention have been issued in 10 languages and adapted to other disease areas, including tuberculosis, COVID-19, and emerging pathogens. GPP has given rise to a robust global community of practice, with an expansive history of lessons learned and success stories for the world to build upon. 

But GPP implementation is far from easy. Because GPP looks different in every context and outcomes can be difficult to quantify, engagement work is often seen as secondary to clinical processes, and therefore undervalued and under-resourced. The GPP Body of Evidence demonstrates the contribution of GPP to the research enterprise, and the professionalization of GPP implementation. 

Rest assured that this is not a one-off effort! Stay tuned for a webinar series in 2024 with key partners including WHO and Wellcome Trust that will highlight critical issues in stakeholder engagement in research, linking to corresponding resources from the Body of Evidence. And we’ll be keeping the Body of Evidence up to date – so please reach out if you have resources to add.  

It’s time for GPP to become an international standard for clinical research. Making that case and making it happen, using the GPP Body of Evidence, has never been easier.  

New Episode of the Px Pulse Podcast

The intersection of HIV research and pregnancy

AVAC’s Px Pulse podcast has a new episode: Inclusion of Pregnant and Lactating People in HIV Research: What you need to know. 

People who are pregnant or lactating (PLP) have historically been excluded from research because of concerns for the developing fetus. But this has led to a dearth of data on new interventions against health threats for this population. In the case of HIV, pregnancy raises the risk of acquiring HIV by up to three times, but providers often do not have the data to know whether a new intervention is safe or how it will work for pregnant patients. As a result, PLP and their physicians are left to make difficult decisions around the use of proven HIV prevention products as they await more data specific to pregnancy and lactation. 

But change is in the air. Champions for the inclusion of PLP in research are paving the way for a paradigm shift— one that will redefine this population from needing protection from research to being better protected through research. In this episode of Px Pulse, AVAC’s Manju Chatani-Gada takes us through conversations with a trial participant who became pregnant, researchers, policy-makers and donors to understand why this population gets excluded, the impact it has, and what to do about it.   

Tune in to hear

  • Dr. Anne Drapkin Lyerly, Principal Investigator of the PHASES Project to advance equitable inclusion of pregnant women in HIV research and its follow-on project, PREPARE, focused on ethical HIV research in adolescents who are pregnant.  
  • Elisia Madende, Trial participant in the HPTN 084 trial in Zimbabwe
  • Dr. Ashley Lima, Health Science Specialist and Lead Technical Advisor for Socio-behavioral Research – USAID Office of HIV/AIDS Research Division 
  • Dr. Takunda Sola, HIV Prevention and Key Populations Medical Officer- Zimbabwe MoH AIDS/TB Unit 

Advocacy resources 

Vital Conversations in October and November: So many webinars, so little time!

The October and November calendar of webinars offers a wealth of conversations on cross-cutting issues facing advocates who care about global health equity and HIV prevention. From discussions on PEPFAR reauthorization, to an evolving picture on sexually transmitted infections, to case studies on new interventions at the intersection of HIV prevention and family planning, to research on barriers to care and health priorities for Black gay men in the US; it is a season for advocates to engage in shaping an agenda for 2024.  

Scroll down for details and see you online! 

October 26, Practicality over Panic: What happens if PEPFAR isn’t reauthorized? 

At 11:00 AM ET: Join the Global AIDS Partnership (GAPP) for a candid assessment of the current landscape around PEPFAR, including the implications for work on the ground. It is intended to redirect anxiety into action and provide a reality check: PEPFAR is not going anywhere any time soon.

REGISTER

October 31, Boo, Syphilis is Really Back!

At 1:00 PM ET: Syphilis rates have increased drastically in recent years. Learn how others are addressing these rising rates and the techniques clinicians are using to detect, treat, and prevent infections. Co-hosted with NACCHO and NNPTC.  

REGISTER

November 7, Results from STI Landscaping Analyses in East and Southern Africa—Part 1 

At 9:00 AM ET: Hear results from STI landscaping projects conducted by AVAC partners in seven different East and Southern African countries that explored needs for STI vaccines and diagnostics.  

REGISTER

November 9, Results from STI Landscaping Analyses in East and Southern Africa—Part 2

At 8:00 AM ET: Hear results from STI landscaping projects conducted by AVAC partners in seven different East and Southern African countries that explored needs for STI vaccines and diagnostics. 

REGISTER

November 9, Pioneering Self-care Solutions to Drive Access to HIV Prevention and Family Planning 

At 8:00 AM ET: This session will amplify lessons from five self-care interventions in family planning and HIV prevention — with case studies on specific interventions— DMPA-SC; the Caya Diaphragm; the Dual Prevention PillHIV self-testing; and Triggerise; an mHealth platform. Learn more about how these successful self-care strategies can be applied across diverse settings and join the discussion on the future of self-care in sexual and reproductive health. This session is part of the 2023 Self-Care Learning and Discovery Series. Learn more here

REGISTER

November 15, HPTN 096: Building Equity Through Advocacy – An Integrated, Status-Neutral Approach for Ending the Epidemic Among Black Gay Men in the South

At 10:00am ET: Join The Choice Agenda and partners for a fascinating discussion about a novel, much-needed HIV prevention research study – HPTN 096. Currently in the field, the study addresses social, structural, institutional, and behavioral barriers to HIV prevention and care. Visit the study website here. See the speakers list here. Co-sponsored by PrEP in Black America and Federal AIDS Policy Partnership Research Working Group 

REGISTER