Intersectionality-Informed HIV Cure-Related Research at the End of Life: A Call to Action

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Authors: Ali Ahmed, Brittany A. Shelton, Malachi Keo, Kris H. Oliveira, Alejandra Mortlett-Paredes, Whitney Tran, Samuel Ndukwe, Taylor Jeff, Thomas J. Villa, Bridgette Picou, Leslie Matherne, Renato Bobadilla-Leon
+8 more Rachel Lau, Stephanie Solso, Cheryl Dullano, Davey Smith, Antoine Chaillon, Robert Deiss, Sara Gianella, Karine Dubé
Cited by: 1
References: 61

Abstract

Introduction: End-of-life (EOL) HIV cure-related research offers a unique opportunity to advance scientific discovery while honoring the values, dignity, and legacy of people with HIV. However, participation remains demographically skewed, mirroring long-standing inequities in who is informed, invited, and supported to take part. Synthesizing eight years of experience, published literature reviews, and community engagement from the University of California San Diego’s Last Gift program, we propose strategies to embed justice, equity, diversity, inclusion, and accessibility (JEDIA) throughout the design and implementation of EOL HIV cure-related studies. Discussion: Using intersectionality as a structural analytic framework, we examine how interlocking systems and social determinants shape access, consent, and participant experience, and we translate ethics into action across three themes and eight domains. As examples, we facilitate equitable access by implementing solutions that address gaps limiting awareness and feasibility of participation. We establish ongoing consent through multi-session consent processes with teach-back methods, clear healthcare proxy pathways, and explicit separation of research activities from clinical care. We center lived experiences by partnering with people with HIV and community groups, customizing participation, and honoring cultural and spiritual needs. We enable real-time course correction by using a dashboard that monitors enrollment patterns and representation. Conclusions: An intersectionality-informed, participant-centered approach is both feasible and essential to ensure HIV cure-related research advances with fairness, trust, and global relevance. Programs such as the Last Gift show that scientific rigor, integrity, and participant dignity can coexist, establishing a model for equitable HIV cure discovery.

Fields of Study & Subjects

Ethics in Clinical Research HIV/AIDS Research and Interventions Mental Health and Patient Involvement

Publication details

Journal / source
International Journal of Environmental Research and Public Health
Publisher
MDPI AG
Volume
23
Issue
3
Pages
295–295
Publication date
27 February 2026
Language
EN