Cancer Support for LGBTQIA Patients Is Missing

Cancer Support for LGBTQIA Patients Is Missing

Guest Commentary

Apr 01, 2021

By Sanford E. Jeames, DHA (he/him/his), and Shelley L. Imholte, PhD, LCSW, MSW, MEd (she/her/hers)

Authors’ Note: Readers unfamiliar with the language used in this feature can refer to the Human Rights Campaign Glossary of Terms.

What does the patient–doctor relationship who is an ally of lesbian, gay, bisexual, transgender, queer, intersex, or asexual (LGBTQIA) persons actually look like? How does the patient–doctor relationship differ when the patient identifies as LGBTQIA? How does the relationship differ when the oncologist identifies as LGBTQIA? What changes happen in LGBTQIA patient–doctor relationships when stereotypes related to race, ethnicity, religion, profession, class, and/or sexual practices are present? How is sexual expression a consideration in cancer treatment planning for LGBTQIA patients? Perhaps the most important questions are what does LGBTQIA equity look like in cancer care specifically, and in health care in general? Some of the questions are explored in cancer literature, albeit scarce when compared to their cisgender and straight counterparts. While difficult to admit, the LGBTQIA community, most notably persons of color in the LGBTQIA community, are largely absent in the data.

In the current socio-political-cultural climate in the United States and around the world, change is happening—change that is long overdue. While great numbers of individuals and organizations advocate for needed changes, we are concerned the LGBTQIA community may be overlooked, as demonstrated in other historical records. For example, Bayard Rustin, a key figure who planned the historic 1963 March on Washington, was a gay African American man, but this fact is essentially unknown by many. Another example, Marsha P. Johnson, an African American transgender woman who was largely responsible for bringing attention to the modern gay rights movement, is rarely acknowledged as a contributor to the campaign.

These two individuals are seldom discussed in African American communities that support LGBTQIA issues. In 1952, author Ralph Ellison published The Invisible Man and made note that America preferred that African Americans remain invisible. Perhaps today similar thoughts exist in the cancer community as it relates to LGBTQIA cancer care. This is a time like no other—a time for all-inclusive change. The field of oncology would be wise to consider full inclusion of all persons and, in doing so, must contemplate innovative changes in cancer care for LGBTQIA persons.

Cancer is a significant health concern in the U.S., with one in four persons dying from cancer each year and the probability of an invasive cancer on the rise for both men (44%) and women (38%); to date, datasets of gender non-binary persons are rare. Moreover, as the U.S. population lives longer, the risk of a cancer diagnosis increases, with an estimated 2.3 million new cancer diagnoses per year by 2030.1 Not only is the absence of LGBTQIA data alarming, the invisibility of these communities is inequitable. What we do know from LGBTQIA cancer literature is that LGBTQIA persons are more likely to be diagnosed with later-stage cancers. Lifestyle factors (socio-economic status, smoking, diet, and weight), inconsistent health screenings, discrimination by medical professionals and/or medical institutions, and a long history of stigmatization have been cited as reasons for later-stage cancer diagnoses in LGBTQIA persons.

Because lifestyle and environmental factors contribute significantly to cancer deaths, the cancer community focuses on prevention and screening for early detection, yet cancer surveillance programs at the federal, state, and local levels do not collect data on LGBTQIA populations. Consequently, LGBTQIA cancer experiences go unacknowledged, which not only limits research funding for these populations, it also hinders efforts of oncologists, mental health providers, researchers, patient and community advocates, and policymakers to appropriately address LGBTQIA disparities. Agencies of all types (i.e., federal, state, local, private, nonprofit, and academic institutions) acknowledge that barriers such as race, gender, sexual orientation, ethnicity, disability/ability, socio-economic status, and geographic location are present and contribute to significant cancer and health disparities. Despite this awareness, funding to assess, understand, and develop comprehensive oncology care for LGBTQIA persons and LGBTQIA persons of color remains inadequate in the U.S. and around the world. As a result, evidence-based practices in LGBTQIA cancer care are limited. Important psycho-social factors (partner support, support communities, access to care) addressing multiple layers of stigma are absent in LGBTQIA cancer care.

What can be done? While training in cultural competence, gender, and sexuality is valuable, a radical shift beyond attending a webinar or workshop, or even reading this feature, appears necessary. First, LGBTQIA persons are not all the same. Similar to every other cultural group, LGBTQIA communities are richly diverse. Second, paying attention to symbols (i.e., bathroom signs, language on intake paperwork, identified pronouns) is necessary for those providing lifesaving oncology care. Lastly, perhaps it is time for physicians to shed the symbolism of the white coat, because the coat represents an oppressive authority. Perhaps it is time for physicians to openly disclose how they identify and share the limitations that their identity may have on quality care, rather than putting the onus of disclosure on marginalized persons. Imagine a health care system that is accountable for the heterosexist white framework that oppresses LGBTQIA persons and all persons of color. Imagine a health care system that collaborates with and engages LGBTQIA communities, values methods of accurate data collection, and honors the Hippocratic Oath’s commitment to serve.

Unfortunately, socio-political-cultural changes are painstakingly slow and cancer does not wait. Finding, and trusting, LGBTQIA cancer care teams can be difficult. The National LGBT Cancer Project is a good place to start, whether you are a provider looking for resources for your patients or a patient yourself. The organization is staffed by volunteers dedicated to LGBTQIA quality cancer care to improve treatment and quality of life in LGBTQIA communities. The National LGBT Cancer Network offers a wealth of information and, perhaps more importantly, the network is gathering data through OUT: The National Cancer Survey. For those persons diagnosed with cancer, it is difficult to discuss the situation, however, sharing the experience with safe family members or chosen family members is valuable. Invite caregivers to attend appointments, treatments, and procedures not because you are burdening them but rather because they care for you and making decisions for others about how they care for you is not acceptable. Attend safe and inclusive community support groups where others are able to support you and offer valuable insights about their cancer journey. Providers, we have a responsibility to make our offices and clinics a safe space for our LGBTQIA patients and for their loved ones, and to be prepared with resources specifically for these communities, so that they can access the high-quality care and support they need and deserve.

Every patient, every day, everywhere is ASCO’s commitment, an indicator for all of us that change is on the way.

Dr. Jeames coordinates a health science program in AISD, and is an adjunct professor at Huston-Tillotson University and a community health educator and patient advocate. His professional interests include health education, cancer prevention, and healthier lifestyle interventions, with a focus on underserved populations. Dr. Jeames is chair-elect of the ASCO Health Access & Outcomes Committee and a member of the ASCO-ACCC Collaboration to Increase Participation of Racial & Ethnic Minority Populations in Cancer. Follow him on Twitter @JeamesSailor. Disclosure.

Dr. Imholte is a licensed clinical social worker in Austin, Texas and the founder of Sexual Life Improvement, PLLC, which offers adult psychotherapy, sexual health assessments, community education, among other counseling and educational services. Her professional experiences have included work in biopharmaceutical research, urology, gynecology, neurology, academia, and cancer support groups. Disclosure: Dr. Imholte has no relationships to disclose.

Reference

  1. Burkhalter JE, Margolies L, Sigurdsson HO, et al. The National LGBT Cancer Action Plan: A White Paper of the 2014 National Summit on Cancer in the LGBT Communities. LGBT Health. 2016;3:19-31.

Further Reading

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