A critical call to action for transformative cancer care in transgender, non-binary, and intersex populations

As researchers and health care clinicians working with transgender, non-binary, and intersex persons with cancer, we have witnessed firsthand how systemic barriers continue to shape their cancer journeys. Research consistently documents critical gaps that deserve immediate attention: limited cancer screening guidelines and inadequate screenings, delayed diagnoses, limited support services, and pervasive medical mistrust – even within ostensibly “queer-friendly” settings [1–5]. While we acknowledge the need for additional research on the psychosocial impact of cancer on transgender, non-binary, and intersex individuals and the relationship between gender-affirming hormone therapy and cancer outcomes [6], we cannot afford to wait for more descriptive data before taking action. The lives of transgender, non-binary, and intersex patients with cancer depend on it.

Recent policy shifts have created new challenges for research focused on transgender, non-binary, and intersex populations. With executive orders establishing binary sex definitions, governmental institutions have begun labeling transgender health research as “unscientific,” a baseless claim that attempts to justify reductions in federal funding for sexual and gender minority (SGM) research. The dismantling of resources like the Sexual and Gender Minority Research Office (SGMRO) signals a potentially challenging road ahead for evidence-based improvements in cancer care for these groups.

However, these obstacles make the need for immediate action even more crucial. As cancer care clinicians and researchers, we occupy a unique position to create meaningful change. Research involving transgender, non-binary, and intersex patients with cancer reveals that simple yet strategic changes in clinical practice can dramatically improve both patient outcomes and experiences [7].

Thus, we are issuing a call to action. As Audre Lorde, a self-described “black, lesbian, mother, warrior, poet” once wrote, “My silences had not protected me. Your silence will not protect you” [8,9]. Staying silent in the face of attacks on a community can make us feel safe – especially if we are not members of that group – but ultimately, not speaking out on behalf of our transgender, non-binary, and intersex patients and research participants leads us to betray our intention to improve health and wellbeing. By using our collective creativity, we can create a groundswell of movement that mitigates the negative effects of the recent attacks on these communities. Below, we have outlined 10 evidence-based actions that can be immediately undertaken:

1. Train clinicians to provide gender-affirming, and culturally appropriate, care. There are a number of great (and free!) educational resources that have been designed for this purpose, including trainings provided by the Fenway Institute and the cancer-specific Welcoming Spaces training by the National LGBTQI + Cancer Network. Research consistently shows that clinicians who complete such training demonstrate improved patient interactions and outcomes [10,11].

2. Establish researcher training programs designed to increase the number of transgender, non-binary, and intersex researchers as well as researchers working in these areas. Examples of good programs include: The Northwestern Institute for Sexual and Gender Minority Health and Wellbeing’s fellowships; the National LGBTQI + Cancer Network’s Cancer Leader Like Us internships; and SGM Cancer Care’s annual cohort of trainees.

3. Hire transgender, non-binary, and intersex staff such as trans health service navigators. Through their lived experience, trans health service navigators help transgender, nonbinary, and intersex individuals access affirming health care, which has been associated with positive outcomes for patients [12]. Those working on campuses can develop a mutually beneficial relationship with the LGBTQ + student center by inquiring about students seeking internships, research assistant positions, etc. Local community based organizations and their newsletters or social posts can also be a good source of talent.

4. Include transgender, non-binary, and intersex individuals on advisory boards as lived experience experts throughout the entire research process, and be sure to compensate them according to the value of that input, not necessarily based on educational attainment.

5. Display symbols of inclusion to make your office more welcoming. Kamen et al. (2023) found that lesbian, gay, bisexual, transgender, queer, and other sexual or gender minorities (LGBTQ + ) who perceive their medical environment as welcoming are six times more satisfied with their cancer care [7]—a factor directly linked to treatment adherence and follow-up care. Simple “You are safe with me” pins and badge-pulls are very compelling.

6. Show solidarity. If your organization has prohibited you from using your pronouns in your signature line, introduce yourself with them. Speak up when local policy or legislation is being considered that would limit care for these people. Join relevant listservs such as the SGM Research listserv on Gaggle, which was developed by SGM cancer scientists as a safe forum for researchers and trainees across disciplines to communicate and collaborate with one another.

7. Collect information on transgender, non-binary, and intersex persons and revise intake forms to properly collect these data. Strong majorities of both SGM and non-SGM communities are willing to answer questions about their sexual orientation and gender identity [13]. Now that federal data collection on this population is being suppressed, institutional or research data will be even more critical, as long as participant safety and confidentiality is prioritized over data collection. Sexual orientation and gender identity data must continue to be integrated into population surveys such as the ongoing Behavioral Risk Factor Surveillance System surveys. Failing to collect data that represent transgender, non-binary, and intersex people effectively erases them and their needs, deepening health disparities.

8. Empower transgender, non-binary, and intersex patients with information about screenings and treatments that would holistically meet their cancer- and gender-specific care needs. Few people report access to tailored cancer resources or support groups [14]. The more data you collect and resources you help create, the better you will be serving this population. The National LGBTQI + Cancer Network convenes free online support groups that can be promoted as a welcoming resource.

9. Connect with queer communities by partnering with local community centers at resource events and advertise via their communication methods. Also consider networking, engaging with prominent queer stakeholders, and writing opinion pieces.

10. Seek alternate opportunities for funding outside of the federal government and traditional sources. Some foundations, such as the American Psychological Foundation [15] and the B.W. Bastian Foundation [16], seek proposals for research related to SGM health equity. Alternatively, consider crowdsource funding as some researchers have done in the past few years [17].

Lastly, engage in continuous improvement activities to turn these actions into routine practices.

The demographic landscape of cancer care is rapidly evolving. Recent data indicates that 22.3% of Generation Z identifies as LGBTQI + , with an increasing proportion identifying as transgender, non-binary, or intersex [18,19]. This shift demands immediate preparation from cancer care clinicians and researchers to ensure equitable, effective care delivery for present and future patients.

In conclusion, we challenge our fellow research scientists, health care clinicians, mental health clinicians, and other allied health professionals – queer and non-queer – to think creatively and work together on transdisciplinary teams aimed at improving cancer care for transgender, non-binary, and intersex persons. Our creativity can evolve more quickly than new regulations can be introduced. With the support of our allies, we can make a structural difference by acting now.

Let’s commit to move beyond acknowledging disparities to actively addressing them. Let’s work together to transform cancer care for transgender, non-binary, and intersex individuals. The question isn’t whether these changes are necessary – our research has definitively answered that in the affirmative – but rather, how quickly we can implement them to begin saving lives.

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Funding Statement

This paper was not funded.

Declaration of interest

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties. Additionally, Dr. Bybee states that the views in this editorial are her own and do not represent the views of the University of Utah.

Author contributions statement

Sara Bybee: Conceptualization, Methodology, Project administration, Writing – original draft, Writing – review and editing; Lauren Catlett: Conceptualization, Validation, Writing – original draft, Writing – review and editing; Nicole Fleming: Data Curation, Validation, Writing – original draft, Writing – review and editing; NFN Scout: Conceptualization, Validation, Writing – original draft, Writing – review and editing