Getting Back to Our Roots: Engaging People Living with HIV as More than Just Patients

AIDS United’s Positive Organizing Project Funds Nine Organizations Leading the Charge

Washington, D.C. – With support from AIDS United’s Positive Organizing Project, nine community-based organizations throughout the country will implement innovative approaches to revitalize grassroots mobilization and engagement of people living with HIV. With funding from the Gilead Foundation, the nine grantees will implement programs that improve HIV treatment outcomes by addressing HIV-related stigma and raising awareness of HIV among community leaders and policy makers.

“Too many believe they are alone, and that it must be kept secret. People living with HIV have a critical role to play in combating stigma, serving as role models for disclosure and engagement in care, working to decriminalize HIV, and leading advocacy activities by—and for—people living with HIV,” said AIDS United President & CEO Michael Kaplan. “In some ways the Positive Organizing Project is bringing us back to our roots, but the power of bringing people living with HIV together in meaningful ways is just as needed now as it ever was.”

From focusing on the unique needs and experiences of transgender women, providing mentorship and policy training to youth living with HIV, mobilizing African Americans in Indiana, to expanding peer support for women living with HIV – each of the 9 grantee organizations are harnessing the power and resiliency inherent in their communities to make a clear difference in the lives of people living with HIV.

Significant advancements have been made in HIV treatment over the last decade. We now know definitively that early treatment not only improves health outcomes for people living with HIV through reduced viral loads, but also that reduced viral loads result in steep reductions in new transmissions. As scientific advancements have progressed, we have witnessed a parallel reduction in support for meaningful involvement and mobilization of people living with HIV. Yet the ability to engage in care, and to pursue treatment is too often hindered by the fear that many people living with HIV have: that others will learn of their HIV-positive status and discriminate against them.

The initiative, led by AIDS United with support from the US People Living with HIV Caucus, is an evolution and expansion of a 2014 demonstration that funded three sites. The demonstration sites engaged almost 1,000 people living with HIV, created deeper understanding of HIV-related stigma in their communities, and made system-level changes that empowered people living with HIV to get involved with the agencies that serve them.

This year’s nine grantees were selected out of an extremely competitive pool of 93 applicant organizations. Total funds requested through the initiative exceeded available funds by a magnitude of 10, clearly showcasing the dire need for support for positive organizing. “The response was truly overwhelming,” said Kaplan.

“As a member of the US People Living with HIV (USPLHIV) Caucus steering committee, we recognize the importance of networks of people living with HIV and the need to empower people living with HIV. It was a wonderful experience to review the inspiring applications for the Positive Organizing Project,” said Tami Haught. “There were so many great and innovative ideas across the nation. Creating opportunities to strengthen and empower people living with HIV is so important and I am so pleased that AIDS United recognizes this by providing the opportunity for organizations around the country.”

History has shown that people living with HIV can play a critical role in addressing the HIV epidemic. Yet at this critical juncture in history, the voices of people living with HIV in local communities are often being lost as we redirect resources to biomedical responses. “Today, more than ever, we must revitalize a coordinated movement of people living with HIV that helps combat stigma, improves engagement in care, and ensures environments where productive policy and resource allocations can be supported,” said Kaplan.

 The 2015 – 16 Positive Organizing Project Grantees Include:
  • AIDS Partnership Michigan – Detroit, MI
  • Brothers United – Indianapolis, IN
  • Chicago Women’s Project – Chicago, IL
  • Down East AIDS Network – Ellsworth, ME
  • Equality Foundation of Georgia – Atlanta, GA
  • Housing Works – Brooklyn, NY
  • Louisiana Public Health Institute – New Orleans, LA
  • Mazonni Center – Philadelphia, PA
  • Positive Women’s Network Philadelphia – Philadelphia, PA

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About the US People Living with HIV Caucus: The United States People Living with HIV Caucus is a group of organizations, networks, client groups, and individuals with HIV advocating for people living with HIV in the U.S. The Caucus is dedicated to being a platform for a united voice for people living with HIV in the US. For more information, see the website:

About AIDS United: Created by a merger between the National AIDS Fund and AIDS Action in late 2010, AIDS United’s mission is to end the AIDS epidemic in the United States, through strategic grant-making, capacity building, formative research and policy. AIDS United works to ensure access to life-saving HIV/AIDS care and prevention services and to advance sound HIV/AIDS-related policy for U.S. populations and communities most impacted by the epidemic. To date, our strategic grant-making initiatives have directly funded more than $91 million to local communities, and have leveraged more than $115 million in additional investments for programs that include, but are not limited to, HIV prevention, access to care, capacity building, harm reduction and advocacy. Learn more about the Positive Organizing Project at or the critical work of AIDS United at