Nothing about us without us: The evolving role of PEPFAR in community engagement

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The following is a guest post by Ron MacInnis, Deputy Director for HIV, Health Policy Project, Futures Group.RonMacInnis--small jpeg (3)

This month, while working with PEPFAR programs in West Africa to raise awareness on issues such as gender and sexual diversity and their significance in HIV epidemic dynamics, I was reminded by civil society organization leaders of the slogan “nothing about us without us.” This slogan (with its own Wikipedia entry) has been used throughout the world for centuries to articulate the need for constituents and communities to engage in inclusive public policy development. A Presidential Memorandum issued Tuesday by U.S. President Barack Obama, Deepening U.S. Government Efforts to Collaborate with and Strengthen Civil Society, outlines the importance of engaging non-governmental actors in all USG programs.

The U.S. Government and PEPFAR is not alone in urging this strategic emphasis; the Global Fund to Fight AIDS, Tuberculosis and Malaria and other global programs focused on HIV and AIDS are also encouraging new targeted and nuanced HIV policies, strategies, and programs to reach the greatest number of people with effective HIV services. In all efforts to make HIV services most effective at the most proximal level, community and civil society engagement are vital in the global push toward an AIDS-free generation.

Under PEPFAR, a renewed emphasis on strengthening population and health facility data has the potential to allow national AIDS programs to geographically target where policies and programs need to be strengthened, and could also identify where health services are not effective in reaching people of diverse ages, genders, sexual orientations, and other identities or unique circumstances. However, data are not enough; it is also critical to ensure that the voices of communities living with and affected by HIV are engaged in meaningful consultation and partnership with PEPFAR and health providers —particularly marginalized groups whose epidemics are just starting to be acknowledged by service providers, researchers, and policymakers. These communities should be actively involved at all levels of program planning, management, service delivery, policy development, data collection, program evaluation, and reform of poorly performing HIV services.

It’s encouraging to see organizations like the Eurasian Harm Reduction Network educating community leaders on how to cost out health facility interventions for harm reduction and HIV prevention so they can better advocate for resources at the local level. Other promising activities in Malawi and Mozambique developing local-level “scorecards” that provide recommendations on improving health facilities and public health services. Additionally, community groups of MSM are increasingly engaged in country coordinating mechanisms to develop and implement HIV grants from the Global Fund.

Yet, there seems to be an abundance of caution and reticence to scale up investments in these types of community engagement and capacity-building activities. Many countries are wary of reorganizing their public health systems to enable formal community engagement, and donor programs like PEPFAR and the Global Fund are wary of overprescribing civil society engagement or are balancing the investments required for civil society engagement with those that deliver more immediate, measureable health outcomes. More importantly, many communities who see specific needs to scale up programs for people virtually locked out of their national health systems are uncertain their own governments will respect open engagement, diversity, and accountability.

As identified in President Obama’s memorandum, there are PEPFAR and Global Fund partner countries whose governments are working to restrict civil society autonomy. And we know in all countries civil society includes a range of voices, some of which oppose certain services or programs that specifically target vulnerable or marginalized populations. In many countries, there are major debates on issues, such as harm reduction services for people who use drugs; non-punitive services for sex workers; respectful services for gay men or transgender people; sex education for adolescents. Many such groups are supported by government or other powerful stakeholders, including business and organized religion; their perspectives may come to dominate as donor support for more inclusiveness of marginalized civil society voices is weak and fraught with politics.*

As PEPFAR begins to reorganize under new leadership, there are signs that approaches to targeted responses will emphasize investment in effective community engagement and local civil society leadership and advocacy for effective, equitable programs with a rights-based agenda. Development of the annual PEPFAR Country Operations Plans (COPs) in the dozens of countries where PEPFAR invests billions of dollars will have to transform from largely management and data-driven planning exercises with partner governments, to more consultative, strategic processes that formally engage with diverse civil society organizations whose constituents face real barriers to accessing HIV services. To make this transition work, a transparent, systematic plan for local civil society engagement in the COP planning processes and PEPFAR country and subnational program implementation, monitoring, evaluation, and revision will be critical.

*Advancing Country Ownership: Civil Society’s Role in Sustaining Public Health, HPP, amfAR, IPPF Africa Region, Planned Parenthood Global

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