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. 2025 Nov 14;232(5):1017-1023.
doi: 10.1093/infdis/jiaf267.

The Cost of Silence: A Call to Protect the Future of HIV Research and Care

Loreen Willenberg  1 , William Freshwater  2   3 , Dawn Averitt  4 , Linda H Scruggs  5 , Marc C E Wagner  6 , Waheedah Shabazz-El  7 , Wanda L London  8 , Paul A Edmonds  9 , Christopher Tunstall  10 , Benedict Sandile Khumalo  11 , Sharon Worth-Hatlee  12   13 , Orbit Clanton  14 , Derrick Mapp  15 , David Palm  16 , Michael Jentes  17 , Susan Dickerson  13 , Andy Kaytes  13 , Jeff Taylor  9   13
Affiliations

The Cost of Silence: A Call to Protect the Future of HIV Research and Care

Loreen Willenberg et al. J Infect Dis. .

Abstract

This perspective reflects on the legacy of HIV activism and warns against the current dismantling of HIV research and care infrastructure in the U.S. Drawing on voices of long-term survivors and historical parallels, it underscores how silence and neglect once again threaten progress. Despite life-saving tools, clinical trials are being halted, research networks dismantled, and global programs defunded-undoing decades of hard-fought gains. The consequences are deadly, particularly for marginalized communities. History is watching. As before, the HIV community and allies must mobilize to resist cruelty, protect vulnerable lives, and fight for justice, dignity, and the future we were promised.

Keywords: Clinical trials; Equity; Funding cuts; HIV activism; Health; Long-term survivors.

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Conflict of interest statement

Potential conflicts of interest. All authors: No reported conflicts of interest. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed.