In its programming for the 2022 ASCO Annual Meeting, ASCO included a special Education Session on “Gender-Based and Sexual Orientation Inequities: Promoting Inclusion, Visibility, and Data Accuracy in Oncology.” The session offered a comprehensive discussion on the challenges that sexual and gender minority (SGM) patients with cancer face, including disparities in cancer incidence rates and care; the difficulty in collecting accurate data on this patient population; and strategies for creating a welcoming, inclusive, and safe oncology environment. The acronym SGM and the term “sexual and gender minority” are now commonly used by ASCO and the National Institutes of Health as an “umbrella phrase that encompasses lesbian, gay, bisexual, and transgender populations, as well as those whose sexual orientation, gender identity and expressions, or reproductive development varies from traditional, societal, cultural, or physiological norms.”
ASCO has also modified its cancer guidelines template to prompt scholars to use nongendered language and to include an explanation of the importance of doing that in the guideline. For example, in a recent ASCO–Ontario Health (Cancer Care Ontario) guideline on the use of adjuvant bisphosphonates and other bone-modifying agents in the treatment of breast cancer, the guideline recommends that cisgender (or nontransgender) men with early-stage breast cancer should not be treated with bone-modifying agents to prevent cancer recurrence.1
In 2017, ASCO published a position statement on “Strategies for Reducing Cancer Health Disparities Among Sexual and Gender Minority Populations,” with the goal of educating oncology providers on the unique health needs of patients in the lesbian, gay, bisexual, transgender, queer/questioning, and intersex (LGBTQI) community and ameliorating some of the obstacles these patients encounter when they have a cancer diagnosis.2 ASCO’s statement called for a coordinated effort to address health disparities affecting the SGM patient population, including:
- Increased patient access to culturally competent support services
- Expanded cancer prevention education for LGBTQI individuals
- Robust policies prohibiting discrimination
- Adequate insurance coverage to meet the needs of LGBTQI individuals affected by cancer
- Inclusion of LGBTQI status as a required data element in cancer registries and clinical trials
- Increased focus on LGBTQI populations in cancer research.
The results from a 2019 national survey of oncologists at National Cancer Institute–designated comprehensive cancer centers examining their knowledge about LGBTQI health concerns, found that although there was high agreement (65.8%) among respondents regarding the importance of knowing the gender identify of patients, there was low agreement (39.6%) regarding the importance of knowing their sexual orientation. However, the majority (70.4%) of respondents expressed high interest in receiving education on the unique health needs of LGBTQI patients with cancer.3 (See “Recommendations for Promoting Sexual and Gender Minority Inclusion in Oncology Care.”)
The ASCO Post talked with Joshua D. Safer, MD, FACP, FACE, Chair of the ASCO Education Session; Executive Director, Center for Transgender Medicine and Surgery at the Mount Sinai Health System; and Professor of Medicine at the Icahn School of Medicine at Mount Sinai, about the barriers to high-quality cancer care that SGM patients may experience and how the oncology community can create a more inclusive and safer environment for these patients.
Joshua D. Safer, MD, FACP, FACE
Using Inclusive and Specific Language
In your presentation during the ASCO Annual Meeting, you talked about the importance of being specific about the terminology used to describe sexual and gender minority individuals. Please talk about how not using terminology that reflects patients’ experiences and identities impacts the cancer care they receive.
The main issue when caring for patients—all patients—is to be respectful. If you are not respectful, you are not making your patient feel safe and, obviously, that is a barrier to delivering good care, so querying patients about their name and pronouns is vitally important. Using the pronouns that patients choose is part of being respectful.
That said, when a presenter is giving a talk on sexual and gender minority patients, for example, there is still too much imprecision in the terminology used to describe this population. The big concern for me is when a presenter describes sex and gender simplistically, and I plead with health-care providers and researchers not to do that. Simply put, sex is biology, and gender is a construct. But I see the word “gender” being used as shorthand for “gender identity,” which includes a hard-wired biological aspect, along with being shorthand for “gender expression,” which is how people present themselves to others.
The bottom line is to be specific in the language we use. People use terms like “biological sex,” but I don’t know what that means. As medical professionals, we have to say what we mean. Do we mean chromosomes, do we mean a specific body part? When we mean “gender identity,” we have to say “gender identity” and not just “gender.”
Phrasing and nomenclature also change over time. For example, the term “transsexual” was widely used in the past, but it is now considered offensive by some, and the more inclusive term “transgender” is preferred.
Asking Patients About Their Gender Identity
Since gender identity is not listed on patient intake forms, how do providers know their patients’ gender identities?
This information should be asked on patient intake forms, and if it is not, providers should push their clinics and institutions to incorporate it on their patient intake forms and in their electronic medical records. We have challenges in my institution, where some of our computer systems need to be updated to include this information. If it is not provided on a patient’s intake form, the provider should ask the pronoun the patient uses.
GUEST EDITOR
Sam J. Lubner, MD, FACP
Understanding Cancer Risks in SGM Patients
Research is showing that gender-affirming hormone therapy is likely safe and that there appear to be relatively low rates of prostate and breast cancers in transgender women and low rates of ovarian, uterine, and cervical cancers in transgender men. Please talk about the need to include LGBTQI individuals in cancer clinical trials to more fully understand the risks of developing cancer in this patient population.
To begin, if we do not have a mechanism to routinely collect data on gender minority patients, then we do not know the cancer risks for this patient population. The limited data we have do not show more cancer among transgender individuals. In fact, small retrospective studies suggest that transgender women may have lower rates of breast cancer than cisgender women.4
Often, the real culprit is minority stress, for example, when transgender people are treated badly and neglected, and they engage in unhealthy behaviors such as smoking. This, in turn, could lead to more cases of lung cancer.
Making Clinical Trials Accessible to LGBTQI Patients
How do assumptions about gender identity and anatomy complicate eligibility in clinical trials for gender minorities or intersex individuals, and how should clinical trials be designed to accommodate LGBTQI patients?
Gender identity and sexual orientation should be specifically included in the eligibility criteria for clinical trials, because if the only options are “male” and “female,” the trial could exclude intersex or transgender participants. If we do not collect these data clinically, all clinical trials will miss this important factor about a patient.
Researchers have to consider what they are going to measure in a clinical trial. To include all eligible patients, we have to ensure that we are not excluding patients with a certain body part, sexual or gender identity, or hormone profile, so the information derived from the study benefits all patients, regardless of sexual or gender identity.
Building an SGM Cancer Registry
None of the large national cancer registries collect data about sexual orientation or gender identity, so the number of LGBTQI individuals diagnosed with cancer each year is unknown. However, it is estimated there are more than 1 million sexual and gender minority cancer survivors in the United States.5 Is progress being made to collect these data?
Progress is very slow and modest. It is a conspiracy of inertia. Most organizations in the United States recommend a two-step question on intake forms and medical records that queries both gender identity and sex recorded on the birth certificate. However, currently, only a single sex/gender question is typically asked on these forms.
SGM individuals experience stigma and structural discrimination in accessing cancer care, which can lead to cancer disparities. Addressing these barriers requires cancer institutions and oncologists to become gender neutral and avoid gendered language. Are advances being made in these areas?
There is some progress but not nearly enough. There has to be a greater cultural shift and, ultimately, systemic changes to move away from gendered-care models to ensure SGM patient visibility, clinical safety, and access. For example, cancer organizations, including ASCO, are updating guidelines to incorporate inclusive language, such as referring to “people” with ovarian cancer, rather than “women” with ovarian cancer. ASCO has also added language to guideline templates that emphasizes the importance of avoiding gendered language.
To help facilitate inclusiveness in clinical care, cancer centers should ensure that the names of clinics, waiting rooms, or other facilities are gender-neutral and that all-gender bathrooms are available and accessible to patients. They should also employ SGM staff and clinicians and make cultural humility training available.
As medical professionals, we have to say what we mean…. When we mean ‘gender identity,’ we have to say ‘gender identity’ and not just ‘gender'.— Joshua D. Safer, MD, FACP, FACE
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Many national oncology organizations continue to conflate gender identity and other elements of anatomy in cancer guidelines, so oncologists remain steeped in gendered assumptions about cancers that may impact the ways in which they address patients. We still have so many barriers to overcome.
DISCLOSURE: Dr. Safer reported no conflicts of interest.
REFERENCES
1. Eisen A, Somerfield MR, Accordino MK, et al: Use of adjuvant bisphosphonates and other bone-modifying agents in breast cancer: ASCO-OH (CCO) guideline update. J Clin Oncol 40:787-800, 2022.
2. Griggs J, Maingi S, Blinder V, et al: American Society of Clinical Oncology position statement: Strategies for reducing cancer health disparities among sexual and gender minority populations. J Clin Oncol 35:2203-2208, 2017.
3. Schabath MB, Blackburn CA, Sutter ME, et al: National survey of oncologists at National Cancer Institute–designated comprehensive cancer centers: Attitudes, knowledge, and practice behaviors about LGBTQ patients with cancer. J Clin Oncol 37:547-558, 2019.
4. National LGBT Cancer Network: The LGBT community’s disproportionate cancer burden. Available at https://cancer-network.org/cancer-information/cancer-and-the-lgbt-community/the-lgbt-communitys-disproportionate-cancer-burden. Accessed February 2, 2023.
5. Alpert AB, Scout NFN, Schabath MB, et al: Gender- and sexual orientation-based inequities: Promoting inclusion, visibility, and data accuracy in oncology. Am Soc Clin Oncol Educ Book 42:1-17, 2022.
