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Less than 1% of U.S. clinical trials include trans patients. It isn’t by choice.
November 20 2024, 08:15

This Transgender Awareness Week, we need to address something the healthcare system cannot afford to ignore any longer: the underrepresentation of transgender and nonbinary individuals in clinical trials. This isn’t just a gap in data — it’s a glaring oversight in healthcare equity, one that has real consequences for people’s lives.

Let me be clear: Inclusion in clinical trials is not optional. It should be a core qualification in any study that claims to advance healthcare for all. Yet fewer than 1% of clinical trials in the United States include transgender or nonbinary patients. One may assume that this lack of participation is by choice. However, our recent survey at the PAN Foundation reveals a striking level of interest in clinical research among LGBTQ+ people. 

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Despite being one of the communities most aware of historical harm and past exploitation in medical research, 65% of LGBTQ+ respondents expressed a strong willingness to participate in clinical trials. This statistic is not just encouraging — it’s noble. LGBTQ+ individuals remain committed to advancing medicine for everyone, including each other. They recognize the power of collective action in improving healthcare outcomes and have repeatedly shown their willingness to contribute.

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However, this willingness has been met with inadequate outreach. When asked why they have not participated, 80% of LGBTQ+ individuals report that they’ve simply never been asked to consider clinical trials. It’s as if the healthcare system presumes this community wouldn’t want to participate — a damaging assumption that denies opportunities for both LGBTQ+ patients and the entire field of medicine.

PAN’s Opening Doors to Clinical Trials initiative is our way of extending an invitation. Through the support of ComPANion Access Navigators, we help people overcome barriers like transportation and costs related to other basic needs. We also provide tools to locate trials easily and offer resources that combat mistrust and build transparency. We want the LGBTQ+ community to feel that they belong in clinical trials. Because they do.

Transgender Awareness Week calls us to do more than acknowledge the existence of transgender and nonbinary people in healthcare. It challenges us to actively include them, especially in clinical research that shapes the future of medical treatment. Without their participation, data and findings are incomplete, and the healthcare field continues to operate with limited knowledge and understanding of transgender and nonbinary health needs.

For researchers, healthcare providers, and policymakers: If you aim to serve the health of the public, you must ensure that clinical trials include transgender and nonbinary patients. This is not a request; it’s an obligation to every individual we claim to serve. For every person excluded, we fall short of our mission.

With federal mandates and government involvement in DEI remaining uncertain, private companies, nonprofits, and pharmaceutical firms play a vital role in setting active goals to increase representation. Together, we can bridge this gap and create a future where everyone has an equal stake in the medical research that shapes healthcare. Let’s make inclusion in clinical trials the norm — not an option, but a mandate.

For more information on the PAN Foundation’s Opening Doors to Clinical Trials, or to speak with someone about potentially joining a clinical trial, visit https://clinicaltrials.panfoundation.org/

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