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

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Emily Bass
Friday, March 8, 2019

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: