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Download the full PDF of TAGline May 2019

Nothing About Us Without Us


This TAGline is all about the importance of community engagement in research to end the epidemics of HIV, HCV, and TB. As this edition’s cover shows, protestors at the “Storm the NIH” demonstration and die-in in May 1990 demanded political will and funding for research, and equitable access to treatment for HIV. This bold and knowledgeable action brought about a massive increase to investment in HIV research, and extensive changes to how AIDS clinical trials were conducted.

This and other actions of ACT UP, TAG, and other HIV activists have proved how important it is to meaningfully involve affected communities in each step of the planning and conduct of the research itself. They showed that their goal of “nothing about us without us” could be a reality. TAG's work continues to perpetuate progress towards this end every single day.

In this issue of TAGline you'll find:

Nothing About Us Without Us: Community Engagement in Research to End the Epidemics
By Erica Lessem

Act Up. Fight Back. Fight TB: Potential Pathways to R&D Funding Advocacy for the U.S. TB Community
By Elizabeth Lovinger and Suraj Madoori

From Engagement to Leadership: Placing Community Priorities at the Heart of HIV Prevention Research
By Jeremiah Johnson

Sound Off: Three Activists Reflect on Community Victories and Priorities in TB Research
By Mike Frick and Lindsay McKenna

Scientific Complexity and Ethical Uncertainties: The Importance of Community Engagement in HIV Cure Research
By Richard Jefferys

The Final Frontier: Breaking Down Barriers to Community Engagement in Diagnostics Research
By Erica Lessem and Stacey Hannah

TAG has its roots in ACT UP and activism, so this is a very special TAGline for us. We hope you’ll find it as inspiring to read as we did to write.