Although efforts have been made by various medical societies, including ASCO, over the past decade to address the needs of sexual and gender minorities in the cancer care setting, research shows that lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ) patients continue to face barriers in accessing that care and, as a result, bear a disproportionate cancer burden. The reasons are many, including societal stigma and discrimination; lack of health insurance—sexual and gender minority individuals are twice as likely as non–sexual and gender minority individuals to be uninsured1—and oncology providers’ lack of knowledge about the health-care needs of this patient population.
A national survey of 450 oncologists from 45 National Cancer Institute (NCI)-designated comprehensive cancer centers, which assessed provider attitudes, knowledge, and institutional practices concerning LGBTQ patients with cancer, found that their knowledge was limited about these patients’ cancer needs. However, interest in receiving education about this community was high.2
According to the survey results, of the 149 respondents, 65.8% agreed it was important to know the gender identity of patients, but just 39.6% reported it was important to know their sexual orientation. In addition, 63.1% said their institutional intake forms did not ask about a patient’s sexual orientation, and more than half of the respondents reported they do not ask about patients’ sex at birth or their current gender identity. Nonetheless, there was much interest in receiving education regarding the unique health needs of this community, and more than 40% believed there should be mandatory medical training regarding LGBTQ patients.
Addressing the Needs of Sexual and Gender Minority Patients
Although the exact number of people in the United States who are part of a sexual or gender minority is not known due to a lack of demographic data collection on this population in the United States Census, the National Gay and Lesbian Task Force Policy Institute estimates that between 5% and 10% of the general population identify as LGBTQ.3 According to the American Cancer Society (ACS), about 1.8 million people will be diagnosed with cancer in 2020, and nearly 607,000 will die of the disease. Based on these figures, the ACS calculates that approximately 135,000 LGBTQ individuals could be diagnosed with cancer this year, and more than 45,000 may die of cancer.3
To address the needs of both sexual and gender minority patients at risk for receiving disparate oncology care and members of the oncology workforce who are LGBTQ, in 2017, ASCO published a policy statement, which was reviewed by GLMA: Health Professionals Advancing LGBT Equality (formerly Gay and Lesbian Medical Association; www.glma.org) The statement outlines recommendations that call for increased outreach and educational support for sexual and gender minority patients; increased cultural competency training about sexual and gender minorities for providers; improvement of quality-of-care metrics that include sexual orientation and gender identity variables; and increased data collection to inform future work addressing the needs of sexual and gender minority communities.4
Nelson Sanchez, MD
A year before the release of ASCO’s policy statement on disparities in sexual and gender minority oncology care, The ASCO Post interviewed Nelson Sanchez, MD, Associate Professor of Medicine at Weill Cornell Medical College; Chair, Weill Cornell Medicine LGBTQ Steering Committee; and Associate Attending at Memorial Sloan Kettering Cancer Center in New York, about a white paper he and his colleagues had published; it called for the development of a national LGBTQ cancer action plan to increase research into cancer prevention, treatment, and survivorship in LGBTQ individuals.5
In a recent follow-up interview with The ASCO Post, Dr. Sanchez discussed the progress that has been made since the publication of this white paper nearly 5 years ago and what more needs to be done to reduce cancer health disparities among sexual and gender minority patients.
Please talk about the progress that has been made in the knowledge about cancer prevalence in LGBTQ individuals and the increased research into a better understanding of the health conditions that affect this population since the publication of your white paper nearly 5 years ago.
The first thing I would say is, progress comes slowly. But there are some new initiatives that we’ve launched since publication of our white paper in 2016. Several of the collaborators on that paper applied for a National Institutes of Health (NIH) Research Education Program (R25) grant to develop curricula to train current and future researchers on the best practices in sexual and gender minority cancer research. We were awarded the grant and are planning a virtual SGM Cancer CARE Workshop (http://bngap.org/sgm-cancer-care-2021-workshop/) in April 2021 to teach researchers how to conduct behavioral health research in cancer and how to involve more sexual and gender minority patients in clinical trials. We will soon be applying for a 5-year R25 implementation grant to distribute the curriculum nationally, which, if we receive the grant, would launch in 2022.
There has been progress in other areas since the white paper was published as well. We’ve been invited by the publisher of Annals of LGBTQ Public and Population Health to edit a special cancer issue, which is scheduled for the fall/winter of 2021. The purpose of this special issue is to gather leaders in the field to share their perspectives on the new frontiers in sexual and gender minority cancer research. For example, key topics include research on adolescent cancer care, reproductive health, and fertility concerns for sexual and gender minority patients undergoing cancer treatment and palliative and survivorship cancer care for these patients.
Our other area of major concern is how our numerous hospitals and clinics collect and share sexual and gender minority cancer patient data. We want to create a system where we can aggregate sexual and gender minority cancer data on a larger scale to look at trends in health disparities. At Memorial Sloan Kettering (MSK) Cancer Center, we have started asking about sexual orientation and gender identity on health intake forms, and we hope other cancer centers will collect this information as well.
The Office of Continuing Medical Education at MSK and Weill Cornell’s LGBT Steering Committee have also established Safe Zone LGBT Allies Training programs. They are designed to increase the overall campus community’s understanding of the issues faced by LGBTQ patients, address those concerns, and acquire the skills to serve as “allies” to this patient population. So, progress is being made, albeit slowly.
Karen M. Winkfield, MD, PhD
Understanding Cancer Risk in Sexual and Gender Minority Individuals
What is known about cancer risk in LGBTQ individuals?
We know that lesbians have higher rates of obesity, nulliparity, and alcohol use compared with their heterosexual peers. Thus, some lesbian women are at increased risk for several cancers, including breast, ovarian, and endometrial cancers. Sexual and gender minorities also have higher rates of tobacco and alcohol use, which puts them at greater risk for all cancers, including lung, bladder, liver, and esophageal cancers.
We know there are higher rates of human papillomavirus–associated cancers—including head and neck, cervical, and anal cancers—diagnosed in sexual and gender minority patients than in the general population. And men who have sex with men and transgender women are disproportionately affected by human immunodeficiency virus–associated cancers, such as anal and colorectal cancers, as well as certain types of lymphoma.
There are also disparities in screening behaviors in LGBTQ communities that have to be addressed to improve cancer outcomes. For example, lesbian and bisexual women experience cervical cancer at the same rate as heterosexual women, but they are less likely to receive routine cervical screening.
Creating a Welcoming Environment for Patients
Among the factors for delayed cancer care and worse outcomes in LGBTQ patients is their perceived or real discrimination by medical professionals. Has there been any improvement in medical training in culturally competent care for LGBTQ patients and in sensitivity training for medical staff on creating a safe space for patients and their partners?
If you walk into a clinic and you don’t see images of people from your community and there are no pamphlets available that speak to the health concerns of sexual and gender minority patients, it sends a message that you may not be welcome. When LGBTQ individuals are filling out a health intake form and there are no demographic fields asking about sexual orientation or gender identity, it sends a signal that there is information about their identity they need to hide. A lack of cancer-focused sexual and gender minority patient and community education outreach programs further increases the distrust many sexual and gender minority patients have of medical providers.
To correct the inequities to optimal access to cancer prevention, screening, and high-quality cancer care, changes have to be made at both the interpersonal and institutional levels—and changes are happening to improve sexual and gender minority patient care. Many medical schools now have curricula specific to the health-care needs of sexual and gender minority communities, but more needs to be done to improve sexual and gender minority health education. For example, health-care accreditation and standards-setting bodies should create performance standards and metrics for assessing knowledge about cancer health needs, risk factors, and prevention strategies, as well as sexual and gender minority cultural humility among health-care organizations and individual providers. Developing standards for education in sexual and gender minority health issues and standardized tools for implementation would help provide a safe environment for sexual and gender minority patients to disclose their status and allow for personalized care.
In addition, ASCO is supporting the development of research training for current and future scientists to raise awareness of sexual and gender minority health issues through its Young Investigator and Career Development awards. As part of this training, participants would learn about best practices in eliciting and addressing gender identity and sexual orientation information from patients.
As a community, we also have to ensure appropriate access to insurance coverage to meet the needs of sexual and gender minority individuals affected by cancer. And we have to commit to promoting national policies that prevent discrimination and hostility toward any individuals, including sexual and gender minority individuals, for any reason, including religion, ethnicity, or sexual orientation or gender identity.
Becoming Better Educated Oncology Providers
What can oncologists do immediately to become better educated about the health-care needs of this patient population?
They can participate in national conferences. For example, the LGBT Health Workforce Conference, which I chair, offers CME credits for participation and will be held virtually on April 22–24, 2021 (https://diversity.weill.cornell.edu/events/2021-lgbt-healthworkforce-conference). Each fall, GLMA holds its Annual Conference on LGBTQ Health (http://glma.org/index.cfm?fuseaction=Page.viewPage&pageId=1210&parentID=1196. There are several journals that include information about the health-care needs of this population, including ASCO’s journals, which highlight research findings on cancer-related risks and outcomes for sexual and gender minority patients, and LGBT Health.
In addition, oncologists can make sure to provide a welcoming environment for patients by displaying brochures and educational materials about sexual and gender minority health concerns and customizing their health intake forms to include patients’ preferred name and pronouns.
DISCLOSURE: Dr. Sanchez reported no conflicts of interest.
1. Human Rights Watch: “You Don’t Want Second Best”: Anti-LGBT Discrimination in US Health Care. Available at www.hrw.org/report/2018/07/23/you-dontwant-second-best/anti-lgbt-discrimination-us-heath-care. Accessed December 10, 2020.
2. 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.
3. American Cancer Society: Lesbian, Gay, Bisexual, Transgender, Queer (LGBTQ) People With Cancer Fact Sheet. Available at www.cancer.org/content/dam/cancer-org/cancer-control/en/booklets-flyers/lgbtq-people with cancer-fact-sheet.pdf. Accessed December 10, 2020.
4. 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.
5. 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 3:19-31, 2016.