Feature story

New report highlights vital role of community-led organizations in pandemic response and preparedness

28 January 2022

In a new UNAIDS report, Holding the line: communities as first responders to COVID-19 and emerging health threats, organizations led by and for people living with HIV and key populations detail their efforts to respond to the colliding pandemics of COVID-19 and HIV. Drawing on qualitative survey data spanning 225 community-led organizations across 72 countries, the report provides a snapshot of the organizations’ work during early 2020 to sustain the HIV response while supporting their communities through the COVID-19 pandemic. The report also illuminates the high-priority actions that are still urgently needed to ensure the continuity of HIV-related services, as well as the sustainability of the community-led organizations providing them.

In community members’ own words, the report tells a story of the phenomenal resourcefulness of community-led organizations to mobilize when and where governments could not. Their stories show that organizations led by and for people living with HIV and key populations, including women and young people, have leveraged in-depth HIV knowledge into broader pandemic expertise. In the face of service interruptions, health commodity shortages, curfews and severe funding gaps, the organizations adapted rapidly to continue providing HIV-related services.

Community-led organizations reported becoming more involved in distributing antiretroviral medicines and self-testing kits, negotiating with government officials to ensure that medicines would be accessible and personally delivering them to beneficiaries. Many organizations also reported shifting their services online, as well as relying on telephone and email contact for personal counselling and monitoring of health status, with some even making home visits in urgent circumstances. Material support, including food packages and income supplements, was mobilized and distributed to those in greatest need.

Organizations also undertook COVID-19-related service provision. They began outreach to community members and the broader public to raise awareness about COVID-19 and share information about how people could protect themselves. They detected and responded to rising levels of gender-based violence, providing assistance and support to survivors. They also distributed masks, soap and hand sanitizer, and constructed handwashing facilities. When the cost and availability of masks and soap became an issue, many community-led organizations reported finding innovative ways to produce these items themselves.

However, the majority of these organizations were distressed that their absence—especially from planning and decision-making processes—was resulting in the failure of national COVID-19 responses to address the needs of their communities. They repeatedly expressed deep concern about the economic impact of lockdowns and travel restrictions on their beneficiaries. They also highlighted continuing difficulties in obtaining personal protective equipment and travel approval, public transport or private vehicles for their staff. 

Organizations reported shouldering extremely heavy burdens with little external support. Intense funding gaps left staff in these organizations exhausted and working nights and weekends to fundraise, usually unsuccessfully, with some even turning to their own personal salaries and savings to help their communities.

Community-led organizations are at the heart of a people-centered, human rights-based public health response. UNAIDS has repeatedly called for support and funding for community-led infrastructure, emphasizing that communities urgently need the space and the resources to lead. 

“Community-led organizations have guided us through two pandemics, first the AIDS pandemic and now COVID-19,” said Winnie Byanyima, Executive Director of UNAIDS. “Their central and critical role in providing services at the heart of communities, reaching the most vulnerable, must be recognized and valued. Collectively, we must do more to support them financially, engage them meaningfully in decision-making processes and ensure they have all the resources they need to continue their work in responding to HIV and COVID-19 and for future pandemics.”

Where public health systems have engaged community-led networks and organizations and empowered those most affected by pandemics, they have been more successful at countering disinformation, ensuring the continuity of health services and protecting the rights and livelihoods of the most vulnerable. This is what it means to put people at the centre of pandemic responses.

In order to ensure the sustainability of a community-led HIV response, the report calls for five measures to be adopted as a matter of urgency:

  • Community-led organizations must be fully included and integrated into national pandemic responses, including the continuing COVID-19 responses. This cannot be limited to consultation and should take place at the level of policy development, planning, design and evaluation of interventions.
  • Short-term emergency funding must be mobilized and made readily available to community-led organizations.
  • A stable, long-term funding base must be established to enable community-led organizations to function effectively.
  • The information base on the work of community-led organizations must be expanded and deepened through systematic documentation, identification of good practices and information-sharing.
  • Continuity of HIV-related services must be guaranteed, including through expanding funding to community-led organizations and establishing collaborative arrangements between community-led organizations and medical facilities to ensure sustainability of the HIV response through COVID-19 and future pandemics.

Read the report