[Editor’s Note: In celebration of Pride Month in June, we are pleased to share the following commentary from Wil Vickroy, MSN, MRA, RN, Director of Clinical Research at the Mazzoni Center in Philadelphia, Pa., which serves as the city’s primary comprehensive LGBTQ+ health and wellness center.]
When we talk about LGBTQ+ rights in today’s political climate, clinical research may not make the top of the list of concerns. I’d argue it should. The research enterprise we all depend on was shaped, in meaningful part, by LGBTQ+ activists—and the work of conducting and joining inclusive research today carries that activism forward.
A landscape built by activists
The clinical research and drug development landscape as we know it was fundamentally reshaped by the AIDS crisis of the 1980s—many of its victims belonging to the LGBTQ+ community—and the activists who refused to wait. Fast-track designation, accelerated approval, and the now-common presence of patients in U.S. Food and Drug Administration (FDA) advisory committee meetings all trace their origins to ACT UP.{1} Through demonstrations to “Seize the FDA,” die-ins on the steps of federal buildings, and the deliberate filling of spectator seats at advisory meetings, this movement forced a regulatory transformation that got lifesaving HIV medications to people far faster than the system had ever allowed. It was not simply 1980s-era deregulation or mounting industry influences that changed the science, but grassroots activists.
That legacy feels especially urgent now, as federal support for LGBTQ+ health is under direct attack. The National Institutes of Health’s (NIH’s) Sexual and Gender Minority Research Office, established only in 2015, was disbanded last January. An analysis of federal data by The New York Times last year revealed at least 323 of the 669 NIH grants cancelled in whole or in part in May 2025 had a connection to LGBTQ+ health, amounting to more than $800 million in funding.{2} Though court actions re-instated the grants later in the year, the long-term viability of federal support for LGBTQ+ focused research hangs in the balance. The infrastructure activists built to bring patients inside the process is the same infrastructure now being dismantled.
Why LGBTQ+ research matters
Diversity in clinical research is an ethical imperative on its own, but the public health case is just as compelling. LGBTQ+ people face elevated rates of depression, anxiety, suicidality, substance use, and certain malignancies.{3} For those members of the LGBTQ+ community with cancer, evidence reveals worse outcomes along the care continuum from screening through survivorship, yet the causal mechanisms are not well characterized due to the limited amount of literature.{4} Further, a 2026 review of more than 1,700 highly cited cardiovascular trials revealed that only two studies reported gender identity and zero on sexual orientation.{5} We cannot serve a population that our evidence base has systematically rendered invisible. We know that when patients see themselves reflected in research, they are more likely to engage with care, enroll in trials, and adhere to treatment.{6} Strong evidence is the foundation of informed, relevant care.
Building research where the community already is
My own path into LGBTQ+ health began as a teenager navigating the healthcare system who was fortunate to have had a LGBTQ+ competent primary care provider with the awareness and compassion to make space for sensitive conversations. I wanted to join the ranks of providers who could make that kind of difference in a young LGBTQ+ person’s life. Ultimately, I found my way to it through research. In college, two nurse practitioners who delivered gender-affirming care trusted me with a patient navigation internship, then collaborated with me on a focus group about the care-seeking experiences of trans and nonbinary patients in our region. The lesson was unmistakable: affirming, competent care was not distributed equitably, and there was a great deal of room to do better.
Since then, through my career I have worked on behavioral trials to improve PrEP and HIV-treatment adherence among young LGBTQ+ people of color, then as a research nurse, ran COVID-19 and Phase I HIV vaccine trials. I also contributed to oncology studies while completing graduate degrees in health leadership and regulatory affairs. After years in highly visible, well-resourced academic institutions, I got the opportunity to transfer the knowledge from these experiences to a community setting by joining Mazzoni Center as its first Director of Clinical Research this spring.
Mazzoni Center has served Philadelphia’s LGBTQ+ community since 1979 as a health and wellness center offering primary care, HIV and STI testing and treatment, behavioral health, and other supportive services. Our long-standing community presence is precisely what makes authentic participant engagement possible. Like any emerging site, we’ve been writing standard operating procedures, sourcing lab equipment, and selecting a clinical trial management system vendor—but the real work is thoughtfully integrating studies into a clinic that serves more than 10,000 patients a year—70% of whom identify as LGBTQ+—and pursuing study protocols we know will meaningfully affect them.
Participation as a form of service
We know from the evidence that altruism is among the strongest motivators for research participation.{7} Witnessing this as a research nurse, and being entrusted with my participants’ care, has been the most rewarding part of my career. Even on trials offering real therapeutic promise, the overwhelming majority of participants have told me they decided to enroll in studies to help people in the future. That is activism in its most generous form: an act of service performed in the hope that the next person’s care will be better informed than their own. It is the same impulse that put bodies on the FDA’s steps in 1988, expressed now through a signature on a consent form.
What the field owes, and where it’s heading
I’d go a step further: given how much the industry inherited from LGBTQ+ activists—and given the current assault on federal LGBTQ+ research—the field owes it to this community to design research around its needs. Stepping into a more sponsor-facing role, I’ve been encouraged by what I’m seeing. Sponsors increasingly understand that research must be participant-centered and community-driven. One protocol we recently reviewed for feasibility built sexual wellness education and social harms assessments into every study visit—not to capture endpoints, but for the participants’ benefit.
That is what carrying the legacy forward looks like. The activists of the 1980s proved that the people most impacted by a condition—whether it be physiological or sociopolitical—belong in the room. Every inclusive protocol, every community-based site, and every participant who enrolls in the hopes of helping someone else, is a continuation of that work.
References
1. Grossman LA. 2016. AIDS Activists, FDA Regulation, and the Amendment of America’s Drug Constitution. American Journal of Law and Medicine 42(4).
2. Mueller B. 2025. Trump administration slashes research into LGBTQ health. The New York Times. https://www.nytimes.com/2025/05/04/health/trump-administration-slashes-research-into-lgbtq-health.html
3. Urueta TD, Corliss HL, Lee KH, Calzo JP, Jun HJ. 2025. Assessing Minority Stress and Physiological Response Through Ecological Momentary Assessment and Sensors: Protocol for a Feasibility and Acceptability of the Stress and Heart Pilot Study. JMIR Form Res 9:e68733. doi:10.2196/68733
4. Kent EE, Wheldon CW, Smith AW, Srinivasan S, Geiger AM. 2019. Care delivery, patient experiences, and health outcomes among sexual and gender minority patients with cancer and survivors: A scoping review. Cancer 125:4371–9. https://doi.org/10.1002/cncr.32388
5. Ponodath GS, Dewan H, Saha T, Thomas SS, Yang JC, Connolly DJ. 2026. Collection and Reporting of Adult Sexual Orientation and Gender Identity Data in Highly Cited Cardiovascular Research. Circ Popul Health Outcomes 19(2):e012724. doi:10.1161/CIRCOUTCOMES.125.012724
6. Asquith A, Sava L, Harris AB, et al. 2021. Patient-centered practices for engaging transgender and gender diverse patients in clinical research studies. BMC Med Res Methodol 21(202). https://doi.org/10.1186/s12874-021-01328-4
7. Truong TH, Weeks JC, Cook EF, Joffe S. 2011. Altruism among participants in cancer clinical trials. Clin Trials 8(5):616-23. doi:10.1177/1740774511414444
