Improving Tobacco Cessation Research for the Non-Binary Community: A Call for More Inclusive Data and Representation

By: Tania A. Ruedas Ortiz (she/they), We Breathe Communications Intern

It was through the non-binary community that I began to understand myself more fully. Hearing others share their stories helped me embrace my identity and feel comfortable using she/they pronouns. That sense of belonging gave me the confidence to ask deeper questions—not just about myself, but about the systems we move through daily. I’ve also seen firsthand how often non-binary people are underrepresented or dismissed in healthcare settings. That’s why I advocate fiercely for their inclusion in tobacco cessation research – not just to reflect their health and experiences, but to ensure they are included in policies and programs that allow them to thrive.

In early 2025, the Trump Administration implemented an executive order that mandated federal agencies to recognize only two sexes: male and female. As a result, transgender and non-binary people have been erased from federal documents and websites. Agencies such as the NIH, HHS, and the CDC removed LGBTQ+ resource pages, halted gender-inclusive data collection and research. The deliberate erasure of  LGBTQ+ data not only undermines ongoing and future research but also deepens the marginalization of communities already fighting for visibility and representation in research.   

The data erasure underscores a broader concern: without ongoing advocacy, the risk of further excluding non-binary individuals from research continues to grow. Concerningly, Non-binary and transgender people are often miscategorized as one, despite their differing identities and journeys. The misclassification leads to misleading conclusions and generalized interventions that fail to reflect real-life experiences. Without specific data, public health programs aimed at “LGBTQ+ people” risk being ineffective – or worse, alienating the very communities they seek to support.  What gets overlooked in programs often resurfaces in the daily struggles of those most affected.

When tobacco cessation research does not reflect or respect identities, seeking help can feel impossible. Who wants support from a system that makes them feel invisible?  For many non-binary people, smoking or vaping becomes a coping mechanism in response to discrimination, gender dysphoria, or being repeatedly misgendered. The usage of tobacco and nicotine products is not exclusive to the non-binary community.

Research shows LGBTQ+ individuals are more likely to use tobacco than their heterosexual peers, but non-binary people remain statistically invisible, even though they make up roughly 11% of LGBTQ adults. Without non-binary specific data, their distinct experiences will be erased. How can tobacco cessation programs truly support these individuals if they rely on a one-size-fits-all approach that treats non-binary people as an afterthought rather than a valued part of our communities? 

Strategies for Inclusive Tobacco Cessation Research

To create meaningful change, we must center non-binary people in both research and programs to develop inclusive strategies for tobacco cessation or quitting efforts and research:  

1. Design Inclusive Research Methods: Research must require the collection of Sexual Orientation and Gender Identity (SOGI) data—see image example. From the example questions, we offer “non-binary” as its own distinct gender identity. The slight but meaningful change allows people to self-identify in a way that reflects their lived reality, improving the accuracy and usefulness of the data.
2. Tailor Tobacco Cessation Programs for Non-Binary Individuals: Non-binary people experience unique challenges, such as gender-based discrimination or lack of access to affirming care, that differ from those of cisgender and trans men and women. Tobacco prevention and cessation programs should reflect these unique experiences, providing support in a safe and respectful environment.
3. Conduct Long-Term Research: We need long-term studies that follow non-binary individuals over time to understand how and why tobacco use begins, continues, and ends. Quitting tobacco is rarely a one-time event—understanding what does and does not work is essential.
4. Increase Representation in Public Health Campaigns: Non-binary people should be visible in public health materials as a recognized part of the community. When people see themselves reflected in public health messaging, they’re more likely to trust and engage with it.

Moving Toward Equitable Health Outcomes

LGBTQ+ tobacco use research must evolve to address the unique experiences of non-binary individuals. I remember talking with a non-binary friend who, while trying to quit smoking, was repeatedly misgendered by providers and unable to find any resources that resonated with their experience. That frustration and invisibility made them feel hopeless and pushed them deeper into dependence on nicotine. 

Creating meaningful change requires more than just acknowledging these gaps. Institutions must actively work to design inclusive studies, develop tailored programs, and elevate non-binary voices within tobacco prevention efforts to understand the causes of addiction within specific communities. This is not just a matter of equity; it’s a public health necessity. 

…

Tania A. Ruedas Ortiz (she/they) is the We Breathe Communications Intern at the California LGBTQ Health and Human Services Network. Tania is a graduate of the University of La Verne, holding Bachelor’s Degrees in Political Science and Speech Communication, and is currently a Public Policy Graduate Student at the University of California, Riverside.