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

**Authors:** Ali Ahmed, Brittany Shelton, Malachi P. Keo, Kris H. Oliveira, Alejandra Mortlett-Paredes, Whitney Tran, Samuel O. Ndukwe, Jeff Taylor, Thomas J. Villa, Bridgette Picou, Leslie D. Matherne, Renato Bobadilla-Leon, Rachel Lau, Stephanie Solso, Cheryl Dullano, Davey Smith, Antoine Chaillon, Robert Deiss, Sara Gianella, Karine Dubé

PMC · DOI: 10.3390/ijerph23030295 · International Journal of Environmental Research and Public Health · 2026-02-27

## TL;DR

This paper proposes strategies to make end-of-life HIV cure research more inclusive and equitable by applying intersectionality principles to study design and delivery.

## Contribution

It introduces a practical framework to embed justice, equity, diversity, inclusion, and accessibility in end-of-life HIV cure research.

## Key findings

- Demographic inequities persist in end-of-life HIV cure research participation.
- Intersectionality-informed procedures can strengthen trust and research validity.
- Multi-session consent and enrollment dashboards improve equity and transparency.

## Abstract

Public health relevance—How does this work relate to a public health issue?
End-of-life HIV cure-related research can advance discovery while honoring dignity and legacy, but participation remains demographically skewed, reinforcing inequities in who is informed, invited, and supported.Drawing on eight years of UC San Diego Last Gift experience, literature review and community engagement, this paper offers a practical approach to embed intersectionality-informed justice, equity, diversity, inclusion, and accessibility throughout end-of-life study design and delivery.

End-of-life HIV cure-related research can advance discovery while honoring dignity and legacy, but participation remains demographically skewed, reinforcing inequities in who is informed, invited, and supported.

Drawing on eight years of UC San Diego Last Gift experience, literature review and community engagement, this paper offers a practical approach to embed intersectionality-informed justice, equity, diversity, inclusion, and accessibility throughout end-of-life study design and delivery.

Public health significance—Why is this work of significance to public health?
The paper applies an intersectionality-informed framework to convert ethical guidance into practical procedures organized across three themes and eight domains, designed to be implemented directly or adapted to local capacity.We frame equity as integral to methodological rigor that strengthens trust, representation, and the overall validity of HIV cure research findings.

The paper applies an intersectionality-informed framework to convert ethical guidance into practical procedures organized across three themes and eight domains, designed to be implemented directly or adapted to local capacity.

We frame equity as integral to methodological rigor that strengthens trust, representation, and the overall validity of HIV cure research findings.

Public health implications—What are the key implications or messages for practitioners, policy makers and/or researchers in public health?
Practitioners and researchers can help protect participant autonomy by removing study design barriers that limit or pressure participation, using multi-session consent with teach back, establishing transparent proxy pathways, and keeping research separate from clinical care.Policymakers and funders can advance accountability by requiring transparent reporting and real-time course correction tools, including enrollment dashboards that track representation and guide corrective action.

Practitioners and researchers can help protect participant autonomy by removing study design barriers that limit or pressure participation, using multi-session consent with teach back, establishing transparent proxy pathways, and keeping research separate from clinical care.

Policymakers and funders can advance accountability by requiring transparent reporting and real-time course correction tools, including enrollment dashboards that track representation and guide corrective action.

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.

## Full-text entities

- **Diseases:** HIV (MESH:D015658)
- **Species:** Human immunodeficiency virus 1 (no rank) [taxon 11676], Homo sapiens (human, species) [taxon 9606]

## Full text

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## Figures

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## References

71 references — full list in the complete paper: https://tomesphere.com/paper/PMC13026468/full.md

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Source: https://tomesphere.com/paper/PMC13026468