Time to change: supporting sexual and gender minority people – an underserved understudied cancer risk population

Sexual and gender minorities (SGMs), which include but are not limited to lesbian, gay, bisexual, transgender, queer (LGBTQ) people, likely represent at least 4% of the current US population[1], and will encompass 2-6 million people over age 65 years by 2030. [2], As do people of every demographic - they get cancer, and risk increases with age. The absence of sexual orientation and gender identity (SOGI) metrics on the US Census, and national demographic and health studies and cancer registries like SEER, leaves us largely ignorant of prevalence and incidence of cancer among SGM people. What is now indisputable is that SGM people face significant health and health care disparities that translate to important differences in cancer risk factors and screening [3-7], morbidity [8, 9] and mortality [10]. What data exist suggest that there is a differential prevalence of cancer overall among bisexual and lesbian women compared with straight women, likely higher prevalence of breast cancer in those same groups, and anal cancer among men who have sex with men and gay men. [11] For significant sub-populations under the SGM umbrella (e.g., transgender individuals) there are no reliable data on cancer incidence and prevalence patterns. Although NIH recently declared SGM people a health disparity population for research - interest and investment in SGM health has been unbalanced: only 1.8% of SGM-focused research addresses cancer; 75% is focused on HIV/AIDs. [11]

The pervasive legal, social, and medical discrimination faced by SGM populations creates persistent psychological stress states with multiple health implications termed “minority stress.”[12] Experienced as stigma, discrimination, and even abject violence, minority stress affects every aspect of individuals’ lives including presence or severity of cancer risk factors (e.g., smoking, obesity, infections like HIV and HPV), likelihood of timely screening, equitable diagnosis, and administration of effective treatment [13]. Our burden as clinicians and investigators is to care for this population throughout the cancer care continuum, despite continued gaps in research and health population statistics.

For example, consider cervical cancer…Cervical cancer is universally described as a cancer of women alone. What is obscured is the distinction between sex and gender. Cervical tissue is present in individuals who were born with a cervix. Sex is the set of genetic, anatomic, and physiological characteristics of males and females of our species, whereas gender represents the social, cultural, and behavior norms associated with being a man, woman, or another gender. There are many men who were born with a uterus and cervix [14, 15]. Furthermore, cervical cancer screening frequency and outcomes are different between cisgender (i.e., non-transgender) women and transgender men (those who identify as men but were assigned female sex at birth).[7] Differences in cervical cancer screening outcomes by gender seem to be related to exposure to exogenous testosterone as well as the system-wide, psychosocial, and physical experiences that hinder obtaining medical care and timely screening. [16] Imagine the experience of a transgender man seeing a CDC bulletin board saying “The Pap test is recommended for all women between 21-65.” Insulted by the mis-gendering but proactive about his health he undergoes cervical cancer screening. Unfortunately, he is told he has cervical cancer and must present for treatment at the “Women’s Cancer Center.” While waiting to see the gynecological oncologist he ponders the clinic banner that says “Excellence in the Care of Women.” The awkwardness continues as Mr. Doe sees a gynecological oncologist who admits she’s never cared for a transgender man before, uses incorrect pronouns, calls Mr. Doe by his “dead” name, and stumbles to understand why he describes himself as straight when introducing his cisgender woman fiancé because the oncologist does not understand the difference between sexual orientation and gender identity. Eventually, still reeling from a cancer diagnosis, Mr. Doe has to book a surgery in the Women’s Surgical Center, but has not had a chance to mourn his loss of an ability to carry children (this was never discussed in treatment outcomes), his fear of surgery, facing his own mortality…

In this issue of JCCN, Hudson et al.’s report brings to the fore the “ignored epidemic” of cancer among SGM people. I applaud the report for its success in raising awareness of potential gaps in current NCCN guidelines, however, the authors’ brief questionnaire to NCCN panel chairs is unable to plumb the panel chairs’ understanding and future intentions for “addressing LGBTQ medical or psychological issues.” Further, the grammatically and sociologically challenging questions Hudson and colleagues raise to NCCN panel chairs as to whether “sexual orientation” or “gender identity” are relevant demographics for the focus of the panel deserves some unpacking. “Sexual orientation” and “gender identity” are not populations, but rather metrics. Everyone has a sexual orientation and a gender identity. What the authors may have meant to ask, and likely what the respondents answered, was, “Are sexual minority populations - or gender minority populations - a relevant demographic for the focus of your panel?” Answering that question is hard given the lack of current data, but frankly there is no cancer type in which SGM people are not a relevant population since SGM people will get every type of cancer and need sensitive patient-centered cancer care.

Studies such as this one by Hudson et al. show us that understanding the relationship between being SGM and the cancer continuum is a nascent field. Their call for data and understanding the experience of SGMs in every cancer research study and registry is timely and mirrors that of a recent American Society Clinical Oncology Position Statement[17]. Frankly, without these data, we are flying blind in differential impact of cancer diagnosis, treatment, and outcome on this community.

Although there is a long way to go to understanding the full spectrum cancer care needs for the SGM community, there are concrete steps that can be taken to understand and address the needs of this diverse community. First, we can’t fix what we don’t understand. Therefore, systematic inclusion of sexual orientation and gender identity measures in all clinical and investigations contexts is key. To this end, all clinical sites should comply with the voluntary but important mandate for collection of sexual orientation and gender identity of meaningful use. [18] All cancer care providers and comprehensive cancer centers should modify intake and data collection forms to assess sexual orientation, gender identity, and sex assigned at birth so we can start to understand risk, incidence, prevalence, treatment, and prognosis indicators. Second, we must create and maintain clinical environments that care for the whole person. Beyond assessing sexual orientation and gender identity and sex assigned at birth, we need to understand what to do with that information both socially and clinically. This means education and training for all personnel (including patient greeter, front desk staff, billing department, and all clinical providers) and ensuring that the physical environment and services provided reflects true diversity. This means signage, magazines and posters, bathroom access, non-discrimination policies, and symptom support centers and patient advocacy groups - do they reflect and serve all people? Good tools to assess and modify clinical environments and training can be found through the Fenway Institute (https://www.lgbthealtheducation.org) and comprehensive resources for cultural competency training for providers and support for SGM people with cancer can be found through National LGBT Cancer Network (https://cancer-network.org). Third, to move the field forward, we need to understand how SGM people’s experience at every step of the cancer care continuum might be the same or different than heterosexual and cisgender peers, but this can only be done by research and clinical trials - which often exclude SGM people. [19] National SGM research cohorts like The PRIDE Study (pridestudy.org) are one important step, but true health equity will only come when every cancer research study includes these demographics. Finally, NCCN guidelines should make modifications and herald an awareness that promotes care for all cancer survivors. For example, NCCN panels should enhance discussion of differences in risk factors, screening, and treatment among populations to include SGM people. This follows on prior models like that of the NCCN prostate cancer guideline discussions of the experiences of African American men vs. Caucasian American men. For example, that same guideline could discuss prostate cancer risk and screening for transgender women (individuals who were assigned male sex at birth but identify as women) who have undergone vaginoplasty noting that prostate exams are best performed via the neovagina and/or discussing how estrogen administration alters prostate specific antigen (PSA) levels. On a broader scale altering NCCN guideline language for relevance to people of all genders and sexual orientations by using sex-based anatomy and not assuming heterosexual relationships or sexual practices will enhance patient comfort and promote understanding of this underserved community. Since NCCN guideline change may take time, commit to immediate local action. Individual clinicians, can affect change immediately in patient encounters, in your clinic systems, research metrics, and in advocacy at the national level. Simple steps taken by every oncologist, in whatever domain you practice, can make a world of difference in meeting the needs of SGM people - an often-neglected cancer risk community.