When it comes to health in the queer community, studies have found that LGBTQ+ people experience greater challenges in accessing care than their cisgendered counterparts, and more often experience a complicated relationship with medical providers. As a member of the LGBTQ+ community, and one who has several roles, from provider to patient, I can attest to this.
Cancer adds an additional layer of complexity to LGBTQ+ patients’ interaction with the health care system. There’s a saying that cancer doesn’t discriminate, but we know that in the LGBTQ+ community, there are many factors that play into apparent differences in cancer incidence, care, and outcomes that are largely unresearched. Although conversations around other LGBTQ+ issues are prevalent in mainstream culture, more work needs to be done on understanding our screening, treatment, and survivorship. Survival statistics for queer cancer patients lag behind the average, with major confounders like underreporting and underrepresentation in clinical research clouding the data.
We, healthcare professionals and leaders, need to recognize that people of different backgrounds experience health, healthcare, and disease differently, contributing to healthcare disparities. It’s important that we begin to fully understand the situation’s complexities to find ways to intervene.
In a recent survey by the National LGBT Cancer Network, nearly 90% of participants saw no affirming environmental indicators like signs, posters, or leaflets at health centers, and nearly one-quarter of queer, BIPOC cancer patients do not feel comfortable enough to disclose their identity to providers.
During a closed focus group, one Black breast cancer survivor said, “When I’m fighting for my life, I don’t want to have to fight for respect as well.” This survivor, a lesbian, described how their identity affected every step in receiving care, saying they would “almost rather just die of cancer than this slow death march of the humiliation and invisibility I feel every time I have to go to a clinic or hospital for care.”
How do we move from discussion to meaningful action that makes health and wellness approachable, accessible, and equitable for these communities?
Research: The LGBTQ+ community is not a monolith. It’s crucial to understand their unique experiences. In the oncology space, LGBTQ+ individuals have lower rates of cancer screening, higher rates of anal and cervical cancer, and greater breast cancer mortality. Encounters with the healthcare system for trans and gender-diverse people have been historically fraught with challenges and unfortunately, physicians have played a significant role in the marginalization of trans and gender diverse people. The experiences of LGBTQ+ cancer care is as unique as each cancer itself.
Medical mistrust: While medical mistrust is at an all-time high across the nation, in the LGBTQ+ community, about 70% say they have had experiences that damaged their trust in the healthcare system. The medical profession must mend these broken or strained relationships, re-establishing trust with each community by listening more than we speak, meeting people where they are, and allowing for their beliefs to enter the room as we formalize care plans. By doing this, we develop a deeper understanding of the cultural context of the lives of LGBTQ+ patients, allowing us to create a more welcoming environment and build stronger relationships. This is the essence of what equity and inclusive belonging means in healthcare. We not only have to practice it, but we also have to teach it to the next generation of providers.
Misinformation stems From misconceptions: While there is a wealth of information on public health available online, not all of it has value. It’s increasingly difficult to separate fact from misleading, self-serving fiction. The posting of information with bias or overtly anti-LGBTQ+ sentiments is on the rise. As providers, we must practice the platinum rule “Do unto others, not as we would have done – because we do not walk in their shoes – but as THEY would have done unto them.” We can better communicate and explain standards of care so that all patients can see themselves and realize the benefits of evidence-based approaches in cancer treatment.
Increase representation: Lack of diversity in clinical trials creates a barrier in LGBTQ+ cancer care, limiting the knowledge needed to develop treatment and care that’s most efficacious for LGBTQ+ patients. It’s currently difficult to determine the full extent to which LGBTQ+ patients are represented as most clinical investigators don’t ask about sexual or gender identities. This may leave the specific needs of LGBTQ+ patients related to hormone therapy, immunosuppression, and interventions for a high cancer risk unaddressed. Research shows that the National Cancer Institutes have limited knowledge about the needs of LGBTQ+ patients, who face increased cancer morbidity and mortality, largely due to social and structural determinants of health.
Practice inclusivity: We should be bold in inviting key stakeholders and advocacy organizations to the table for collaboration to build a sustainable ecosystem between health industry leaders, physicians, advocates, and patient communities. Industry leaders at every level can make a meaningful difference by launching discussions and focusing on initiatives that include executive-level positions for LGBTQ+ members to represent and advocate for their communities.
Healthcare is for everyone, regardless of race, ethnicity, gender, sexuality, geography, or age, but LGBTQ+ individuals too often face difficulty in finding health care that allows them to feel a sense of agency. In oncology especially, we can develop scalable and successful models of care delivery that offer more psychosocial, nutritional, and financial navigation services, and enhanced, culturally appropriate screening and resources to the LGBTQ+ community.
Throughout our ecosystem — in medical education and practice environments, among researchers and industry partners, and within our LGBTQ+ community itself, there is work to be done to make sure that each individual is offered every equal opportunity to live and live well. Although the challenge is complex, the lessons and next steps are simple; practice respect, protect and preserve dignity, and offer the highest quality care that you can for sexual and gender minorities. Truly, this is the renaissance that our LGBTQ+ community needs and deserves.
Photo credit: sasirin pamai, Getty Images