HIV advocates say they are 'not being listened to' in PEPFAR review

Advocacy groups are raising alarms that changes to the country's planning process for PEPFAR, the U.S. government’s flagship HIV program, could result in a diminished role for civil society. The issues have arisen during the midpoint review of PEPFAR’s country operational plans — or COPs — the signature planning process that guides the implementation of activities to prevent and treat a disease that still kills more than half a million people every year. Civil society groups typically play a key role in advocating for programs to support vulnerable “key populations” at a time when many face growing threats of criminalization and stigma from governments in HIV-affected countries. “I was in a room two days where I was not listened to, and I feel like I'm not being listened to here, and I feel like there's other colleagues here with me who do not feel listened to,” one civil society representative told Dr. John Nkengasong, the U.S. global AIDS coordinator and head of PEPFAR, in a town hall meeting last Friday. Devex has withheld the name of the individual since the meeting — a recording of which was shared — was closed to the press. The hourlong meeting was held as part of the midterm review. Roughly half of the allotted time was spent on budget and policy presentations by PEPFAR leaders. In the remaining 30 minutes, advocates squeezed in questions about support for key populations, data privacy, and community engagement. Additional concerns about the revised planning process are outlined in a “community sign on letter” to Nkengasong currently being circulated by PEPFAR Watch, a network of civil society organizations that primarily work in the global health field. PEPFAR, which is based in Washington, D.C., has an annual budget of roughly $5 billion, most of which is spent in Africa. Under Nkengasong, PEPFAR undertook a shift last year to lengthen the COP timeline from a one-year planning cycle to a two-year cycle, in an effort to streamline the process and foster more diverse participation. “It's focused on really improving the program so that we can save more lives. That's what we're trying to do at the end of the day,” Dr. Rebecca Bunnell, the acting principal deputy U.S. global AIDS coordinator for PEPFAR, told Devex in an interview Thursday. Civil society representatives acknowledge that this is a new process with growing pains, and some agree that a two-year planning cycle is a good idea. But those who spoke to Devex also warned against letting the pendulum swing too far from intensive, in-person meetings where PEPFAR, national governments, and civil society representatives pored over data and hashed out concrete plans, to a more hands-off approach in which decisions are devolved to the country level. In particular, they complained that data from the first year of the new two-year cycle was made available to civil society representatives too late for them to scrutinize ahead of the midterm review — while some groups, according to one African civil society representative, had to push for it to be shared with them at all. “All in all, COP engagement is not the same. That bit of bringing it back to the countries for finalization really erases the CSO [civil society organization] effect in a big way,” the representative wrote in an internal assessment shared with Devex. Bunnell, the PEPFAR deputy, told Devex that the program has “a strong commitment to the fundamental principle of meaningful stakeholder engagement,” and is continuously meeting with civil society representatives. “It's not a one-off town hall. It's part of our culture,” she said. But in the recent town hall meeting, the participant who challenged PEPFAR’s leadership described a shift. “You've always talked about how we are supposed to have a respectful conversation, a meaningful conversation, and this year's midterm to me and to many of my partners and many of my colleagues and many of my friends who live in these countries do not feel like we are being meaningfully engaged in this midterm review,” they said. In response, Nkengasong, a Cameroonian American virologist who has led PEPFAR since 2022, said during the call that there would be an “after-action review” of the meetings to “discuss all of your concerns.” In the open letter to Nkengasong, civil society groups noted that PEPFAR’s planning process is “a unique feature that is unparalleled in any other program in global health.” “We are unaware of any other program that engages with such sincerity, transparency, accountability, and collaboration,” they wrote. The open letter describes the lack of data available for review as “a massive step backward.” “I think we still recognize that Dr. Nkengasong is doing something new and should be allowed to make some mistakes,” said Suraj Madoori, the director of policy advocacy at AVAC, an international nonprofit based in New York. Madoori added that it is still “contingent on PEPFAR” to recognize that the new process is different from what civil society is used to and to figure out how better to support them. “This is a process that values data to drive policymaking and resource allocation, and if you don't have that data on a timely basis, then it's going to make this process seem more superficial than really have that depth that it needs to drive actual change,” he said. During the town hall meeting, Nkengasong emphasized that his team is “committed to a two-year process. Absolutely committed to it.” He described the midpoint review as “a light review” to check in on progress. Bunnell told Devex that foregoing the annual in-person gathering in favor of a virtual review has brought advantages. “This year, being in country has allowed for a more streamlined process, but also for a lot greater and much more diverse stakeholder participation, including from local civil society, as well as alignment and leadership at the local level,” she said. Update, Feb. 16, 2024: This article has been updated to clarify that Dr. John Nkengasong is of dual heritage.