Activism in Action: Week 1 reporting from the frontlines of the PEPFAR planning process

Every year, representatives from programs under the US Government’s President’s Emergency Plan for AIDS Relief (PEPFAR) meet to make plans, set targets and define approaches for more than 50 countries around the world. This year, the meetings began on February 17, and will run for three weeks in Johannesburg, with countries arriving for the Regional Planning Meetings (RPM). At the RPMs, PEPFAR country and Washington staff, national ministry of health representatives, national and international civil society groups, WHO, UNAIDS and Global Fund gather for three consecutive five-day meetings to lay out the priorities for the PEPFAR program for the next year, which starts the following October.

The first week, which wrapped this past Friday, focused on PEPFAR countries in West Africa and Ukraine. AVAC was there, along with civil society partners from around the world, to make change in real time. We are there to hear the fresh program data, PEPFAR’s plans for addressing gaps, but most importantly to influence outcomes and plans through the filter of our prevention lens and our partners’ priorities. With two more weeks of meetings—and additional opportunities still to come for input into the final Strategic Direction Summaries—here are some highlights, progress and issues to follow.

National Policy Commitments Require Vigilance

These PEPFAR planning meetings focus on US government funding, but the impact of those dollars depends on the policy environment in a given country. Policy change in West Africa was a strong civil society focus at last year’s RPMs, and significant commitments were made. Country government representatives committed to, among other things, eliminating user fees, expanding populations that could benefit from PrEP and removing barriers, particularly for women living with HIV, in transitioning to dolutegravir (DTG) for treatment. Activists returned in 2020 to find that some policy changes had taken hold—expanded DTG uptake among women in Nigeria and over 60 percent user fee elimination in Côte d’Ivoire—but others had not.

Most notably, despite oral PrEP targets, many countries failed to roll it out, denying a critical prevention tool to communities in West Africa. With strong support by activists, PrEP targets were increased in Côte d’Ivoire, Nigeria and Ukraine. As Ambassador Birx noted at her Stakeholder Town Hall meeting for week one, West Africa remains behind in PrEP rollout.

User fee elimination was also off to a slow start everywhere, Côte d’Ivoire as the exception. For example, Nigerian activists, armed with community surveys collected just a few weeks ago, were able to call out the continued existence of user fees in the two states where official statements from the government claimed they had been eliminated. State officials were not in the room to respond, but community activism made it clear that there was more for the Government and PEPFAR to do, and that community monitoring would be needed to hold state and national governments accountable.

Getting Specific, Saving Lives: A human-rights approach to index testing

This year’s PEPFAR Country Operational Plan (COP) Guidance—an annual statement from the Office of the Global AIDS Coordinator (OGAC) of PEPFAR priorities and requirements that PEPFAR country teams must use to develop their COPs, continued ambitious scale-up of index testing. This is an approach that asks a person who has tested HIV-positive to provide the names and contact information of his or her biological children and sexual and needle-sharing partners, who are then followed up for testing. In COP19, OGAC told country teams that a minimum of 30-50 percent of newly diagnosed individuals should come from index testing. The draft COP20 Guidance raised this to up to 75 percent in some areas with high ART coverage. PEPFAR also set a presumption that most (80 percent) of those asked to identify partners will do so.

The escalation of the index-testing target up to 75 percent raised significant and immediate concerns by AVAC and partners. While this approach to HIV testing has potential benefits for individuals and communities when it is done ethically, with consent and without coercion, it can also be aggressively implemented in ways that can cause harm to individuals, undermine their rights to consent, privacy, safety and confidentiality, and can erode the trust of communities with health care providers as AVAC stated in recent Advocates’ Call to Action. Specific attention to promoting and protecting the human rights of women and girls, along with key populations, is essential in index testing. Last year, AVAC, amfAR and CHANGE together co-authored an issue brief on HIV testing strategies.

This year, a rapid survey of sites where expanded index testing occurred revealed a number of examples of coercion and even withholding of ARVs for clients who did not consent to provide the names of their sexual partners. A letter from a number of global and national civil society organizations (CSOs) was sent to OGAC calling for a pause on all index testing while risk-mitigation and mediation efforts are put in place, and that no targets for index testing as a percentage of new diagnoses should be part of COP20. OGAC halted index testing but only for key populations.

This conversation continued in week one, as global and national CSOs together interrogated index-testing programs in different countries. At the end of the week, civil society representatives acknowledged the importance of index testing but remain opposed to high targets for percent diagnoses from index testing.

Good index-testing programs, such as the one in Ukraine, found that they had 45–75 percent acceptance rates signaling that people were free to decline. Comprehensive programs to address intimate partner violence (IPV) are essential to a human rights-based approach to index testing, as is strong accountability for administering these programs.

Community-Led Monitoring Comes of Age

Index testing wasn’t the only hot topic in week one. For the first time, the COP Guidance directed that country programs fund community-led monitoring (CLM). Community-led monitoring is a community led and designed study of the quality and scope of services and the barriers to accessing them; often focusing on key populations and others who are highly vulnerable. CLM is another process by which groups can act as watchdogs to help improve accountability.

Building on initiatives like the People’s COPs in Malawi, South Africa, Uganda and Zimbabwe, as well as other community-led planning and monitoring, OGAC committed funds in each county program for this purpose. Importantly, the design for these programs was not prescribed, allowing CSOs to suggest planning and budgets. CLM programs must be able to evolve, going beyond a simple adjunct to existing PEPFAR evaluations. CLMs must be designed to allow CSOs to pivot in response to emerging issues like stockouts or coercive index testing. CLM program design, and the CSOs to be funded, will be determined in each country as part of the final COP approval after the RPM.

Will the Key Population Investment Fund have impact?

PEPFAR’s Key Population Investment Fund (KPIF), announced two-and-a-half years ago, will finally see resources flowing, via USAID and CDC, directly to local organizations. As we noted last year, tying performance to these Site Improvement Through Monitoring System (SIMS) indicators could mean lost funding for frontline groups that do the essential work of keeping key and vulnerable populations alive and healthy. These organizations combat injustice, stigma and human-rights abuses, and they advocate for mental health and education. AVAC and COMPASS partners amfAR, CHANGE and MPact and are actively monitoring the rollout of the newest iteration of the KPIF.

In week one from Nigeria, we learned how PEPFAR programs are layering treatment of anal warts into larger KP programming, and this has led to a dramatic increase in HIV case finding. Specifically, 70 percent of MSM who tested for HIV came in through anal warts treatment. This kind of layering of services shows the potential impact of KPIF, and equally the need for PEPFAR to evaluate that impact. To that end, one key demand in week one was that PEPFAR provide a plan—and budget—for how they will evaluate, learn and scale up successful interventions from KPIF. AVAC will work with activists coming to weeks two and three of RPMs to carry these demands forward.

Stay tuned for an update from week two! We’ll provide a range of updates, including one from the Zimbabwe room, where COMPASS Africa partners, including the Advocacy Core Team (ACT), will be working to implement the Zimbabwe Community COP.

Want to learn more about the issues above and engaging with PEPFAR—from Johannesburg or from afar? Check out these resources:

What’s New on AVAC.org and PrEPWatch!

In case you missed them, this round-up includes links to updates on PrEP and the vaccine field, advances on pioneering work using human-centered design to inform prevention programs, and essential resources for advocates focused on PEPFAR’s COP planning process, opportunities to engage on the issues of next generation trial design and resources that arm you for smart advocacy in 2020 at large.

 

Dive Into Next Generation Trial Design at CROI

Join our participatory dialogue on next generation trial design! Advocates, researchers and community members will discuss what’s on the table for next-generation HIV prevention trials, including design, regulatory and ethical considerations and mechanisms for community engagement. Co-hosted by AVAC, The Fenway Institute at Fenway Health and The Forum for Collaborative Research, on the sidelines of the Conference on Retroviruses and Opportunistic Infections (CROI).

  • Monday, March 9, 2020 6:30-9:00 PM EST
    The Fenway Institute, 1340 Boylston St., Boston.
    Register Here.

 

The latest Updates on HVTN 702

On Feb 3, HVTN 702 trial leaders announced that vaccinations would be stopped early because the vaccine candidate did not prevent HIV. Importantly, there were no safety concerns. To help advocates understand the results and the implications for the future of HIV vaccine development check out:

 

New Findings from Breaking the Cycle of Transmission

AVAC’s Anabel Gomez and Shawn Malone report on their research exploring the factors that influence decision-making among young women who are at high risk of HIV. Check out the chapter they authored, Understanding HIV prevention in high-risk adolescent girls and young women in two South African provinces, in the 22nd edition of The South African Health Review (SAHR) 2019-12-31. And watch this recorded webinar discussion, featuring this research—one in a monthly series on PrEP rollout produced by the PrEP Learning Network. These research findings are part of the Breaking the Cycle of Transmission project, conducted under AVAC and CHAI’s HIV Prevention Market Manager (PMM) project.

 

Tools for Advocates Engaging with PEPFAR

This FAQ on index testing—a testing approach that tracks the contacts of people who test positive for HIV—provides background on the issue and frames advocacy priorities. While index testing holds potential benefits if ethically done, it’s being implemented now in ways that cause harm and undermine human rights. Changes must be made to protect individuals and foster community trust in their healthcare system.

New factsheets on PEPFAR’s performance and funding by country are now available. They are produced by amfAR as part of our Coalition to build Momentum, Activism, Solidarity & Strategy Africa (COMPASS Africa), and found on amfAR’s PEPFAR Monitoring, Evaluation and Reporting Database! You’ll find details on funding by program area, testing program results, key population size estimates and more. Be sure to search by country and find a downloadable fact sheet on the upper right of each country page.

 

How Does PrEPWatch Work for You?

Calling all PrEPWatch users! Help us understand how the website is being used, what tools and resources you find most useful, and how we can improve with this 3-minute survey. Your responses are highly valued and will be kept confidential.

 

Advocacy Priorities in 2020

The latest episode of AVAC’s podcast, Px Pulse, lays out AVAC’s view of the state of the field in light of certain failure to meet UNAIDS Fast-Track targets by the 2020 deadline. In this episode of Px Pulse, AVAC’s Emily Bass and lead author of our report Now What? talks about AVAC’s blueprint for course correcting. Tune in to learn more!

 

Lastly, the latest figures are up on AVAC’s Global PrEP Tracker.

Announcing: 2020 AVAC Advocacy Fellows and a Decade of the Fellows Program!

AVAC is delighted to announce the 2020 AVAC Advocacy Fellows, ushering in the new decade as the 11th class of the Fellows Program! As we mark this milestone of the program in 2020, we will be reflecting on the lessons and accomplishments of the last decade and looking forward to how the Fellows program can continue to help strengthen the HIV prevention movement.

Seven 2020 Advocacy Fellows have been selected from a pool of more than 150 applicants from 24 countries. We are happy to welcome our new class and our first Fellow from Eswatini. We thank all of the applicants and their proposed host organizations for the time and effort put into the application process. We’re also grateful to the independent review committee of advocates, scientists and former Fellows and hosts who guided our decision-making.

Join us in welcoming the seven 2020 AVAC Advocacy Fellows and their host organizations:

The 2020 Fellows’ year begins in April at a time when there are critical issues demanding action in the HIV prevention field to advance our collective goal of ending the epidemic. Among these issues are the anticipated regulatory opinion on the dapivirine ring; trial results from the AMP study; possible preliminary results from long-acting injectable PrEP; implications of the early stop of continued vaccinations in the HVTN 702 vaccine trial; the development of a novel trial design to study oral F/TAF as PrEP in women; advances toward a possible dual pill for HIV prevention and contraception; new global targets for prevention; evaluation of innovative prevention delivery under PEPFAR’s DREAMS program; and understanding the recent “universal test and treat” trial results.

Please visit the Advocacy Fellows page to learn more about their planned work for the year. We hope you’ll find ways to collaborate with them in 2020 and beyond.

The 2020 Fellows join a group of 70 current Advocacy Fellows and alumni from ten countries who have participated in the program over the last 10 years.

A Call for Applications for the 2021 Fellows Program will be announced mid-2020. If you would like to be notified or have any questions, please email us at [email protected].

And stay tuned for more information about the 10 years of the Advocacy Fellows Program!

Webinar: HVTN 702 updates and next steps

Leaders of HVTN 702 HIV vaccine efficacy trial in South Africa (also known as Uhambo), announced that vaccinations would be stopped early because the vaccine candidate did not prevent HIV. Importantly, there were no safety concerns. Since then, conversations have ensued—from local and global levels—to understand the result and its implications for the future of HIV vaccine development.

AVAC and Advocacy for the Prevention of HIV and AIDS (APHA) held a global webinar on Wednesday, February 19 to reflect on this news and how that may impact HIV prevention globally.

Listen to the recording of the webinar here.

The call provided civil society perspectives from APHA and the Vaccine Resource Advocacy Group (VARG), updates from HVTN 702 researchers, and broader context of HIV vaccine development from the United States NIH’s Division of AIDS (DAIDS).

HVTN 702 is one of several Phase III vaccine trials ongoing at this time. HVTN 705/ HPX2008 (Imbokodo), HVTN 706/HPX3002 (Mosaico) and the PrEPVacc Study are all exploring novel HIV vaccine candidates. Broadly neutralizing antibodies and additional ARV-based prevention options are also in large-scale trials. Though the failure to find efficacy with HVTN 702 represents a disappointment, unflagging momentum in research must continue. It’s crucial to understand these results and the scientific contribution they will make to a future, urgently needed vaccine.

See AVAC’s updated infographics for a visual picture of the pipeline of research on biomedical HIV prevention:

For additional background on the HVTN 702 trial, check out the HVTN’s fact sheet.

As always, please be in touch with any questions!

HVTN 702 Stopped Early for Non-Efficacy

Today the US National Institute of Allergy and Infectious Diseases (NIAID) announced that HVTN 702, a large-scale HIV vaccine efficacy trial of a canary pox-based vaccine candidate, has stopped vaccinations because the vaccine does not prevent HIV.

HVTN 702 (also known as Uhambo) was stopped following a scheduled review by an independent data and safety monitoring board. The review showed no significant difference between the two arms of the trial and importantly, no safety concerns. Trial participants are being informed of the stop and will remain in the study for follow-up.

AVAC applauds the 5,407 trial participants in South Africa for their time and dedication, and the trial team for their hard work in conducting this trial and getting an answer quickly, even if it’s not the one we’d hoped for. The 252 new infections diagnosed across the study is yet another important reminder of the need for access to and uptake of current treatment and prevention options, like oral PrEP, and for continued investments in the development of additional vaccine and non-vaccine options.

HVTN 702 is a Phase 2b/3 study testing a regimen adapted from the vaccine strategy tested in the RV144 Thai vaccine trial, which showed roughly 30 percent lower infection rate among volunteers who received the vaccine versus those who received the placebo.

The vaccine approach in HVTN 702 is different from that being tested in other large-scale vaccine efficacy studies HVTN 705/HPX2008 (the Imbokodo Study) and HVTN 706/HPX3002 (the Mosaico study). It is also different from the planned PrEPVacc Study, which will test yet another vaccine strategy along with oral PrEP. The stop of HVTN 702 does not affect these trials or any other HIV prevention efficacy trials taking place globally.

AVAC and Advocacy for the Prevention of HIV and AIDS (APHA) held a global webinar on Wednesday, February 19 to discuss the latest updates and reflect on how they may impact HIV prevention globally. A recording of the webinar can be found here.

As always, please contact us with any questions.

Understanding HIV Prevention in High-Risk Adolescent Girls and Young Women in Two South African Provinces

AVAC’s Anabel Gomez and Shawn Malone have contributed a chapter, “Understanding HIV prevention in high-risk adolescent girls and young women in two South African provinces”, in the 22nd edition of the South African Health Review (SAHR).

These findings are part of a research project Breaking the Cycle of Transmission, conducted under AVAC and CHAI’s HIV Prevention Market Manager (PMM). Funded by the Bill & Melinda Gates Foundation, PMM is applying behavioral research and human-centered design to better understand and reach young women in South Africa with effective HIV prevention.

Read the full article.

For more information:

Index Testing: Advocates call for action

This update contains background information and an action alert on index testing. While this approach to HIV testing (see below for a definition) has potential benefits for individuals and communities when it is done ethically, with consent and without coercion, it can also be aggressively implemented in ways that can cause harm to individuals, undermine their rights to consent, privacy, safety and confidentiality, and can erode the trust of communities with health care providers.

Download an FAQ with background and opportunities for advocates to engage.

This is a rapidly evolving area of discussion with the PEPFAR Office of the Global AIDS Coordinator (OGAC), country teams, CDC, USAID and other partners. For activists and advocates attending PEPFAR in-country retreats—here are some top-line concerns and demands to consider, discuss and push for:

  • All index testing programs should be immediately paused while risk mitigation and mediation efforts are put in place. Civil society rejects any PEPFAR guidance that only key populations (KP) programs need to deal with this issue or that index testing is only halted for members of KPs. Many key populations test in general population health facilities where disclosing their partners may risk discrimination and violence. Cisgender women and adolescent girls and young women (AGYW) face equally high risk of adverse events related to index testing. Their needs will not be met by KP-specific interventions.
  • Targets that set a percent of HIV-positive individuals that must be identified via index testing cannot be part of Country Operational Plans (COPs) for 2020. These targets apply pressure to programs and implementing partners, and send the message that the target matters more than the quality of service and the rights of patients. Moreover, such targets can’t be set while index testing is paused and remediation is underway.
  • Civil society must be involved in the development of the certification processes for restarting index testing and in the implementation of monitoring. Civil society partnership in providing support and monitoring is needed on an ongoing basis and should be a part of COP2020 budgeting for index testing programs.

Please reach out with questions, contact us if you have reports of harm, and join us in action.

New Episode of Px Pulse!: AVAC’s call for new targets and more in 2020

A new episode of our Px Pulse podcast is ready for download!

2020 Global Targets for Prevention Will Not Be Met: Now What? In this episode, hear about AVAC’s answers to this question in our analysis of the state of the field laid out in AVAC’s annual report.

With unmet UNAIDS “Fast-Track” targets for ending the epidemic now a reality, the field faces the sobering truth that we’ve been striving towards the 90-90-90 treatment targets without the same enthusiasm, focus and commitment to primary prevention targets.

AVAC’s Emily Bass and lead author of our repot Now What? joins this episode of Px Pulse to talk about AVAC’s blueprint for course correcting—bold leadership, smart target-setting for HIV prevention research and implementation, and multilayered prevention programs that are centered around people. She explains why the epidemic needs a sustained response and how leaders from the highest level down to the grassroots can demand accountability and reject a “business as usual” approach.

For the full podcast episode, highlights and resources, visit avac.org/px-pulse. And subscribe on Apple Podcasts, Spotify or wherever you get your podcasts!

Once More Unto the Breach

Matthew is the Director of US Policy & Advocacy at HealthGAP. He is also community co-chair of the Microbicide Trials Network, member of the Vaccine Advocacy Resource Group (VARG), Board of Directors member for the AIDS Treatment Activist Coalition (ATAC) and a member of AVAC’s PxROAR United States program.

For 30 years, everyone fighting to defeat HIV put hope in being the last generation impacted by HIV. This hope kept those of us from key populations fighting, kept us moving and kept us working to save ourselves and our communities. We believed that with bold action and resolve we could make real something that has only been seen through the lens of mathematical models and hypothetical propositions. And yet progress is slipping away through our fingers. Our colleagues and brothers and sisters, in solidarity, have achieved much in eastern and southern Africa, seeing millions receive treatment and the benefits of viral suppression. Yet in so many contexts, a lack of will has stalled progress that is essential if our hopes are ever to come true. A lack of urgency, resources, and the political will to bring our most powerful interventions to bear has brought the field to a fork in the road. We have arrived at a moment that shows us what is possible, or we could backslide away from the gains so hard won in recent years.

In 2014, UNAIDS and partners launched a “Fast Track” strategy to end AIDS by 2030. It was called a leap forward, laying out a plan to quicken the implementation of proven treatment and prevention interventions with milestones or targets to be met by 2020, setting the world on a trajectory to end the AIDS epidemic by 2030. In 2014 this was to be the blueprint for the work ahead.

Many of these targets will be missed in 2020, that is known. But understanding why we didn’t make it and what must change will be the true testament of our moment. The field can deploy our newfound knowledge of the last six years, collaborate with communities, and fill in the gaps so that we develop programming that is adaptive and meaningful in the lives of the communities that must be reached. With smarter, more adaptive plans, fed by what we’ve learned, we’ll set in motion proactive, grounded strategies that, at their core, are centered around those most affected.

The past six years have brought important new lessons and reinforced ones we’ve known a long time. We understand the power of treatment and the challenge of sustaining people’s connection to care. We’ve seen again the importance of programs that take aim at the structural drivers of the epidemic for the most at-risk groups. The prevention package expanded, and as it continues to grow so does our understanding our how to best work with communities. The field is exploring and refining how to build solid programs that are rooted in science and adapted to fit the needs of particular people, places, and priorities. All this will come into full strength if we follow a path carved by deep community engagement because we know community has the power to change the world.

So when I asked the question “Now what?” I say we continue to cycle out programs that aren’t working or are no longer relevant to people’s experiences, making new models that speak to the needs of the community. And that we do it with the single-minded purpose of ending the pandemic while maintaining justice and bending it towards equity. We must explain how this work fits into people’s lives. We must be a groundswell. We are in a transformative time. A sprint towards strong targets over the next 10 years, one that is bold daring and inclusive, even if we come up short will save millions of lives. We have to be able to explain the why and how of what has changed already, what must still be done, and how it all makes people’s lives better than the day before, and better for the day to come…if we pull together.

So that is what we do now.

Bold Leadership—The Missing Piece in the Fight Against Stigma and Human Rights Violations Against the LGBTIQ Community

Prince is a proud and out trans man and human rights activist in Malawi. He is affiliated with LITE (Lesbian Intersex Transgender and other Extensions). Prince advocates for the eradication of stigma and discrimination faced by the LGBTIQ community accessing public services, affecting health, security, justice and economic opportunities. He teaches a class on gender, sexuality, and the acceptance of LGBTI persons at Lilongwe University of Agriculture and Natural Resources, and is a member of AVAC’s PxROAR Transgender program.

Many LGBTIQ activists are failing to understand the intersectionality of the fight against HIV/AIDS, decriminalization of same-sex marriages and the struggle towards freedom. In October 2019, I had an opportunity to attend the 4th Biannual Trans Conference in South Africa. Here I heard activists decry the link between HIV/AIDS and escalating violence against LGBTIQ persons, a doubling of stigma. As a human rights defender and an activist for biomedical HIV prevention methods, I was dismayed to learn how activists attempt to distance themselves from HIV programming to focus exclusively on human rights issues. But as I sat listening to the discourse and reflecting on my country, Malawi, I couldn’t fault their arguments, derived from concerns about persistent and widespread stigma against LGBTIQ communities.

I have realized that when it comes to HIV programming for key populations, what many stakeholders think of when they hear about LGBTIQ persons are lubricants, condoms and PrEP. If this kind of inventory is unavailable or hard to get for key populations, you can hear voices chime up, demanding access to these life-saving resources. But many of these same voices grow quiet at other times, unwilling to openly denounce inhumanity that happens to LGBTIQ persons.

In Malawi, a lot of violence and brutality is pointed at LGBTIQ persons, but a strong cross-section of allies consistently coming forward to condemn such inhumane acts is missing. They choose to play the background role and face each day as if nothing happened. But who will blame them, when considering the heteronormative and religious bigotry which continues to marginalize LGBTIQ persons all over the world. I remember attending a forum where one member loudly said that training 100,000 healthcare workers on sexual orientation, gender identity and gender expression (SOGIE) would not be enough to overcome the barriers that block access to healthcare for LGBTIQ persons. She went on to say that it’s not a question of knowledge, but one of perception. In her concluding remarks she said, and I quote, “even some of us here, we accept you only in this space but when we are home we sit and say ‘mmmh.’”

I really applaud UNAIDS efforts to fight for equality for LGBTIQ persons, and they do more than merely react when attacks are made against LGBTIQ activists. UNAIDS sets the pace for key population HIV programming in so many countries, including Malawi. Much as I am tempted to call for stakeholders and allies to imitate UNAIDS in the fight for justice for LGBTIQ persons, I also want people to have honest conversations with themselves first. People need to evaluate and analyze their own personal prejudice and values against LGBTIQ persons, and, I hope, come to the realization they can fully commit themselves to the fight for justice. We need allies that are bold, courageous, fearless and honest to stand with us in the fight for justice within programming for HIV key populations and beyond it.