Activists on the Frontlines of the PEPFAR Planning Process: Week 2

Emily Bass is AVAC’s Director of Strategy & Content.

The three-week PEPFAR Regional Planning Meetings (RPM) wrapped up last week. Each week two included a fresh group of countries, some familiar patterns and some new ideas. You can check out a write-up of the first week here. One of the most important takeaways to consider is the need for ongoing attention to this work. It can’t be contained within these few weeks—PEPFAR engagement is a 365-day effort, and the wins at the RPM are sometimes fragile. Just one week removed from their COP review, Tanzanian activists went into action after language in the government’s circular on forced anal exams didn’t have a clear prohibition, as promised at the RPM, of the practice. And in Malawi, once activists, government and PEPFAR got home, conversations about seemingly settled issues continued. This isn’t a problem—it’s how the process works, and it’s why the work continues after the RPMs. Here are some additional areas to celebrate and watch with vigilance.

A View from the Zimbabwe Room: Preserving primary prevention, speeding TLD transition

Going into the RPM, Zimbabwe’s lean US$145 million program – as compared to, say, Kenya’s US$350 million program – wasn’t facing any cuts, but its funds were largely consumed by antiretroviral treatment and programming for orphans and vulnerable children (OVC). Growth seemed off the table, and by the end of the week both DREAMS and voluntary medical male circumcision (VMMC) – both key prevention strategies for AGYW and men respectively – faced US$2 million cuts. Zimbabwean civil society, represented by Diana Mailosi of Advocacy Core Team (ACT) and Walter Chikanya of Zimbabwe Community Health Intervention Research (ZiCHIRe) presented priorities developed via in-country consultations—many previously shared with PEPFAR. [The ACT is a key Zimbabwean partner in the Coalition to build Momentum, Power, Activism, Strategy and Solidarity (COMPASS Africa)—learn more about this work here]. These priorities included expanding the coverage of viral load testing; protecting and expanding VMMC; differentiated service delivery and accelerated transition to dolutegravir for treatment, also known as TLD transition. Advocates also pushed for the cuts to DREAMS and VMMC to be rescinded, and those dollars were restored to the programs.

After a week of public negotiation in the Zimbabwe room and in side-discussions, civil society also ensured a commitment to include screening for intimate partner violence (IPV) in all index-testing programs, a PEPFAR intervention to increase identification of people living with HIV. IPV screening is a key step to protect individuals who are asked to disclose their sexual contacts, biological children and needle-sharing partners as part of index testing.

In these meetings, other stakeholders make commitments, too, in response to advocates calling out gaps. This year, the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) stepped in with approximately US$5.5 million for viral load reagents. This became a priority as it became clear that without such a commitment, viral load testing would cover only 60 percent of those eligible. Activists also helped to win accelerated TLD transition, now set to occur in nine months rather than one year, and the Ministry of Health representative from Zimbabwe outlined an approach that centers on women’s choice—so that women of childbearing age who wanted to opt for DTG can do so whether on contraception or not. These are big wins and require ongoing vigilance from in-country advocates to ensure that providers, women and all PLHIV have robust treatment literacy and that the shelves carry the options for contraceptives and antiretrovirals needed to make informed choice a reality.

A Return to Treatment Literacy: It’s about time

The discussion of the Zambia program looked at many issues—including struggles with retention in treatment among certain age groups, persistently low rates of HIV testing within key population programs, and the need for programs to deliver condoms, lubricant, oral PrEP and more while protecting human rights, safety and security. For many in the room—which included Enock from Friends of Rainka and Fred from Network of Zambian People Living with HIV—one key win was the strong commitment to expand treatment literacy at antiretroviral treatment (ART) sites and in the community, led by and for people living with HIV. So many of today’s programmatic interventions, from index testing to TLD transition to PrEP uptake are best delivered with the support of peers who can provide correct, comprehensive information. This “treatment literacy” was once a mainstay of AIDS treatment—but funding for it fell by the wayside as ART clinics got medicalized, and it seemed a matter of just prescriptions and refills. It was never this simple; and today, countries and programs are finally returning to a fundamental element of truly effective public health programs: information from, by and for the people who are the true experts.

What’s Next

COMPASS coalitions in Malawi and Zimbabwe are following up and nailing down the fine points; in Uganda, HEPS, a longtime AVAC collaborator, is finishing up a report on how civil society can participate in PEPFAR’s site-level monitoring work, known as “SIMS”—a critical way to keep tabs on what is actually happening on the ground. Look for that report in the coming months. We’ll announce it on the P-Values blog, and you’ll be able to find it on

We’ll also be closely following developments in so-called “reboot” countries, where the Office of the Global AIDS Coordinator (OGAC) is demanding wholesale overhauls of the programs before any money gets spent. Mozambique, South Africa and Tanzania are all in this category; likewise, the transition to “indigenous” partners—local organizations versus international NGOS—will be something to track to ensure that resources go to groups with ground-level expertise, proven track records and the ability to deliver.

We’ll be watching—will you?

Research Literacy on a Plate: In-person HIV vaccines update for Zambian advocates

Daisy is Communications Advisor, AVAC, and based in Kenya. Chilufya is a passionate advocate for biomedical HIV prevention and research and alumnus of the AVAC Fellows program.

What does the “HVTN” in HVTN 702 stand for? And why do some trials, such as the mosaic vaccine trial HVTN705/HPX2008, carry two interchangeable tags? Also, what’s a mosaic vaccine, and why was it developed? Where are the studies happening, and when can we expect results?

Research literacy for HIV prevention advocates involves clarifying these types of questions. Current and accurate knowledge about clinical trials allows an advocate to engage confidently in the clinical trial ecosystem, which includes researchers, communities, ethics boards, and even funders. A recent gathering was a reminder of how effective it can be to conduct these sessions in an informal, low-tech setting, to invest in their knowledge of HIV prevention science.

At an early evening gathering in February, AVAC staffers joined a group of 20 advocates in Lusaka, Zambia for a research literacy session on HIV vaccines, in particular the three HIV vaccine efficacy trials planned or underway in Africa: HVTN 702, HVTN 705/HPX 2008, and the PrEPVacc trial.

Gathered together around a table in the relaxed restaurant environment of a Lusaka hotel, with snacks in hand, attendees turned to paper handouts (no tech) and gave their attention to the two-hour training. The session covered a basic introduction to vaccine science and the research process, the naming of the clinical trials, trial populations and study timelines. Attendees delved into the composition of HIV vaccines, posed questions, and learned things like how various vectors deliver immunogens, often with adjuvants added to improve the body’s immune response to a candidate vaccine.

The group discussed why it’s been so challenging to develop a highly efficacious HIV vaccine, and the exciting work in the field of broadly neutralizing antibodies, or bNAbs for short. Interaction, questions, answers, and some digressions—the group detoured into a conversation about why young women in East and Southern Africa are especially vulnerable to HIV—all of which encouraged vibrant engagement with the material.

In addition to the science, discussions included a look at other issues relevant to clinical trials for HIV prevention. Advocates in Africa play a critical role in two key areas: pushing their governments to allocate more resources for research, and helping community stakeholders understand increasingly complex trial designs.

Participants declared the after-hours session a hit. They found the discussion on vaccine research “very informative” and “beneficial and interactive.”

Clever Chilende of the Treatment Advocacy and Literacy Campaign (TALC) said, “The environment was very relaxing and enabled maximum participation!”

Chilende is also a Community Advisory Board member for several HIV prevention clinical trials in Zambia. He said he would use the information gained from the training “to create awareness among our members in the community”, and called for further sessions to “look at how the research sites are engaging with various stakeholders in order to have their buy-in and improve community participation in the process.”

Other topics attendees proposed were: Ethics in research; clinical trials involving adolescents; issues around vaccine-induced seropositivity; research on hormonal contraception and HIV risk; and community preparations for vaccine trials. All participants said “yes!” to attending a similar training in the future, and most of them said community engagement and partnership were cardinal to fostering support for research.

The same week in Lusaka, AVAC staff joined a meeting of Counselor Supervisor Officers (CSOs) working at IAVI-affiliated clinical research centers. This meeting provided an opportunity for a more formal research literacy talk covering HIV prevention trials broadly: vaccines, ARV-based prevention, antibody-mediated prevention, as well as the recently completed Evidence for Contraceptive Options and HIV Outcomes (ECHO) study. The upcoming open-label trials that will assess the use of oral PrEP and dapivirine ring in pregnant women (MTN-042 DELIVER, and MTN-043 B-PROTECTED), as well as the efficacy trials pipeline were discussed.

Dr. William Kilembe, Project Director of Zambia-Emory Research Initiative in Tuberculosis and TB/HIV (ZEHRP), joined both the advocates’ and CSO sessions. ZEHRP is one of the HVTN 705/HPX2008 vaccine trial sites in Zambia, and Dr Kilembe’s contribution grounded the discussion in details about how the study is being conducted, achievements, challenges, and community perceptions.

In case you’re still puzzling over the questions at the top:

  • “HVTN” stands for the HIV Vaccine Trial Network, the world’s largest publicly funded multi-disciplinary international collaboration facilitating the development of vaccines to prevent HIV/AIDS. The network collaborates with research institutions in over 30 cities on five continents, and is currently conducting the HIV vaccine efficacy trials HVTN 702 and HVTN 705/HPX2008.
  • HVTN 705/HPX2008, a clinical trial also known as Imbokodo, is underway in Malawi, Mozambique South Africa, Zambia and Zimbabwe, testing a mosaic HIV vaccine candidate designed by the pharmaceuticals company Janssen to protect against the most common variants of HIV. Janssen is also sponsoring the trial, whose double tag simply represents the HIV Vaccine Trials Network’s (HVTN 705) and Janssen’s (HPX2008) naming systems.
  • The AVAC infographic: The Years Ahead in Biomedical HIV Prevention, gives a snapshot of HIV prevention efficacy trials, their products, locations, and timelines.

In-person research literacy trainings will continue to be part of AVAC’s regular research translation and advocacy offerings, which include publications, the Px Wire newsletter, primers and fact sheets, infographics, Advocates’ Network updates, webinar series, P-Values blog, Px Pulse podcast, media cafés for science journalists, and a new online learning and networking platform known as Engage!

For opportunities to participate in short trainings in your area, or for assistance in organizing one, contact us at

Activists on the Frontlines of the PEPFAR Planning Process: Week 1

Emily Bass is AVAC’s Director of Strategy & Content.

Every year, programs under the US Government’s President’s Emergency Plan for AIDS Relief (PEPFAR) make plans, set targets and define approaches for more than 50 countries around the world. This year, the process began on March 4, and will continue for three weeks in Johannesburg, with countries arriving in groups for the Regional Planning Meetings (RPM).

The first week wrapped up today, Friday, and AVAC was there along with partners from around the world, including strong representation from the Coalition to build Momentum, Power, Activism, Strategy and Solidarity in Africa, or COMPASS Africa, a unique North-South coalition focused on supporting data-driven activism and advocacy for impact in Malawi, Tanzania and Zimbabwe. Both Malawi and Tanzania were part of the first week’s planning meeting—so the impact of COMPASS was in full effect. With two more weeks to go in the planning process—and opportunities to input into the final Strategic Direction Summaries for the countries who have already met—here are some highlights to celebrate and issues to follow.

Negotiating National Policy Shifts is Possible—and Powerful

PEPFAR planning meetings focus on US government dollars, but the impact of those dollars depends on the policy environment in a given country. In recent years, more country government representatives have started to attend, creating an opportunity for decision-making about national policies and approaches that PEPFAR alone cannot control. In Tanzania and Malawi, COMPASS Africa partners included the Malawian Civil Society Advocacy Forum (CSAF), the Tanzanian DSDUT coalition and northern NGOs, AVAC, Health GAP, MPact, and amfAR.

Before the gathering, activists flagged a number of policy shifts that could improve impact and save lives in Tanzania, including moving from a pilot to a national program with PrEP; allowing HIV testing to be performed by frontline health workers, not just nurses; allowing multi-month ART prescriptions for up to six months for stable patients; and a clear Ministry of Health policy prohibiting forced anal exams for men suspected of being men who have sex with men (MSM). By the end of the week, the Government of Tanzania had agreed to all of these shifts, and Tanzanian civil society had been both bold and supportive in articulating the value of these approaches, a reminder that PEPFAR is not the only focus in these planning meetings. Country-level civil society has a crucial role to play in voicing the needs and priorities of people most at risk of and living with HIV, and using the moment to secure national policy shifts. Congratulations Team Tanzania!

In Malawi, COMPASS partners from CSAF researched and drafted a “People’s COP”—part of the broader PEPFAR Watch project led by Health GAP, independent of COMPASS, in Kenya, Uganda and South Africa. AVAC’s Maureen Luba, the COMPASS regional Advocacy Advisor and a powerful member of Malawian civil society, worked alongside David Kamkwamba of the Network of Journalists Living with HIV and AIDS (JONEHA), chair of the CSAF, Edna Tembo of the Coalition of Women Living with HIV and AIDS (COWLHA), Health GAP’s Lotti Rutter and other civil society to advocate for demands based on the People’s COP. This potent coalition worked with government, the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) and PEPFAR to negotiate many breakthroughs. These included a major shift in viral load monitoring, such that every PLHIV will now receive annual VL test and results. Other key wins included expansion of the program for voluntary medical male circumcision (VMMC) to three additional districts via a collaborative effort between GFATM and PEPFAR, investment in additional human resources for health, and funding for the scale-up of PrEP—a first in Malawi—to 10 districts in 2019-2020. Congratulations Team Malawi!

Getting Specific, Saving Lives: Civil society demands to protect informed choice and rights-based services for women and girls

Every country makes its own plans, but all receive some common marching orders from the US Office of the Global AIDS Coordinator, or OGAC. This year, these imperatives include accelerated rollout of dolutegravir (DTG)-based treatment regimens and ambitious scale-up of index testing, an approach that asks a person who’s tested HIV-positive (the “index” client) 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. DTG leapt into the headlines earlier this year when a study from Botswana found a “safety signal” (an inconclusive but worrisome finding) that women who became pregnant while on DTG-based regimens were at slightly higher risk of a fetal abnormality known as neural tube defects (NTDs) compared to those taking efavirenz-based regimens. However, DTG is a well-tolerated drug with fewer side effects; people who take it achieve viral load suppression quickly and durably. In fact, at this week’s CROI conference, while PEPFAR negotiations were going on, South African scientists presented the finding that HIV-positive women who don’t start treatment until late pregnancy will reduce their viral load more quickly on DTG-containing regimens, making them less likely to pass HIV to their infants compared to women on efavirenz-containing regimens. (Check out our Twitter feed for a range of real-time CROI updates and stay tuned for an overview of the conference next week.)

The consensus, even before reaching Johannesburg, has been that DTG should be available to everyone who wants it, including women, in the context of contraceptive choices, and that index testing should be done with close attention to the impact on the index client, who might experience violence, stigma or “outing” as a sex worker, MSM or about his or her HIV status if the follow up is not done well.

For DTG, many countries, including Uganda, are adopting a written informed consent form that women must sign before starting the drug. In practice, this means many women aren’t receiving the medication because over-burdened health workers, who are also anxious about client’s health, may find it much easier to prescribe a regimen that seems less risky and doesn’t require a form. So, a step that’s supposed to protect women actually could put a needed drug further out of reach. As Lillian Mworeko, Executive Director of the International Community of Women Living with HIV Eastern Africa (ICW-EA) said, “Paper signing may be great, but it isn’t giving us what we need – what we are talking about is informed decision-making.”

AVAC and ICW-EA, a member of COMPASS, are longtime collaborators, and ICW-EA is supporting sexual and reproductive health advocacy across the region, along with other partners. Here is sample language that was developed this week, to consider adapting for inclusion in all 2019 PEPFAR Strategic Direction Summaries:

  • On index testing: As part of the massive scale-up of index testing, PEPFAR [Country Name] will gather data on the results of the routine violence screening (conducted at every ART visit) for individuals who have submitted contact names, after those contacts have been traced, in order to identify increases in violence associated with index testing contact tracing. Specific attention to promoting and protecting the human rights of women and girls, along with key populations, is essential. Women often learn their HIV status before their male counterparts.
  • On DTG transition: Initiation of DTG transition should start by date XX, be completed by XX, and include tracking of initiation by gender against the stated target [percentage of PLHIV to transition to DTG-containing regimens]. There should be real time review of whether there is gender parity in the percent of men and women transitioning to DTG regimens. If a gap emerges, with fewer women initiating, a rapid assessment of initiation procedures, including consent forms if utilized, should be undertaken. PEPFAR should also conduct assessment of % of ART sites that have FP on-site programmatically and that have stocks of contraceptives, tx/SRHR literacy investment to ensure there are expert clients (women) to do counseling on contraceptives and antiretroviral options. TLE to TLD transitioning should be coupled with treatment literacy led by the community. Women in child-bearing age should be given full information on benefits and risks of using DTG-based regimen and be given options to make informed decision and choice on whether or not be initiated on TLD. The rollout should be based on a human-rights based and woman-centered approach. Women who chose to remain on TLE should be given TLE 400mg for optimization.

Activists Need to Take on Testing: Here’s how!

Index testing isn’t the only hot topic in the arena of HIV testing. Recency testing—which can tell whether a person acquired HIV in the last six months—is also a focus of PEPFAR 2019, as is a rebalancing of testing approaches, or modalities, to emphasize “yield” (the number of people newly tested positive) and reduce costs. What gets counted is what matters. As AVAC has said for many years, a yield-focused approach risks omitting the needs of people who test HIV-negative, and who may be at risk. In addition, there are many questions about how to implement recency testing and to rebalance testing approaches in ways that achieve the desired aims. AVAC, amfAR and CHANGE together co-authored an issue brief on HIV testing strategies that PEPFAR has cited as a valuable guide to these issues—check it out and bring these concerns and questions into your PEPFAR country planning process.

Keep Watch on the Key Population Investment Fund

PEPFAR’s Key Population Investment Fund (KPIF) was first announced two and a half years ago. At the time, it was envisioned as a companion to the DREAMS Innovation Challenge, which would resource frontline groups to provide the services and spaces needed most for some of the groups hardest hit by the epidemic. This year brought the latest information on this long-awaited fund. The resources will flow, via USAID and CDC, directly to local organizations (if a pass-through is required, that organization won’t collect an overhead). What precisely will the funds be able to pay for? Here the language was finely-parsed and left some activists with questions. It is clear that the impact of the funds will be measured in terms of uptake of services, including HIV testing, and linkage to ART or PrEP. But the funds themselves can, PEPFAR says, be provided to groups that do things other than service delivery—such as supporting structural interventions like housing or human rights protections, that make it easier for people to test, choose biomedical strategies and remain in care. This is a tricky notion. Tying KPIF money to performance against PEPFAR indicators is a way of pushing back against what Ambassador Debbi Birx has called “feel good” programs that count people reached, without delineating what they received or what impact was had. (This refers to the KP_PREV indicator, which is poorly defined and deserves a closer look, as Ambassador Birx has acknowledged.) On the other hand, tying performance to these indicators could close space for frontline groups that do the essential work of keeping key and vulnerable populations alive and healthy, by combating injustices, stigma and human rights abuses or advocating around mental health concerns or education, as examples. AVAC and COMPASS partner MPact are actively monitoring the rollout of the newest iteration of the KPIF. We will be meeting with USAID and CDC to learn more in the coming weeks and months. Join us!

Want to learn more about how to inform PEPFAR—from in Johannesburg or afar? Check out these resources:

CROI 2019: Navigating the conference on-site and online

The annual Conference on Retroviruses and Opportunistic Infections (CROI) kicks off on Monday, March 4th in Seattle.

Take a look at this year’s program, search abstracts and follow events through webcasts, aidsmap’s full coverage of the entire conference,’s dedicated page for CROI 2019 and AVAC’s social media updates.

Daily CROI press conferences will be webcast live and available for playback. They can also be viewed via Zoom video conferences or over the phone. Click here for full details.

Among highlights anticipated are data from HPTN 071 (a study looking at the impact of combination prevention on population-level incidence in South Africa and Zambia); the DISCOVER trial (Gilead’s study of daily F/TAF for PrEP in cisgender men and transgender women who have sex with men); the ATLAS and FLAIR studies of long-acting injectable treatment, and so much more.

AVAC and partners will be there, and we look forward working with all of you post-CROI!