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

February 26, 2020

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: