Over the past decade, ASCO has focused its resources on advancing health equity for sexual and gender minority (SGM) individuals with cancer. In 2017, the Society published a position statement “Strategies for Reducing Cancer Health Disparities Among Sexual and Gender Minority Populations,” which outlined five areas of recommendations to address the needs of SGM populations affected by cancer, as well as members of the oncology workforce who identify as SGM.1
Those recommendations include:
- Patient education and support
- Workforce development and diversity
- Quality improvement strategies
- Policy solutions
- Research strategies.
Two years later, ASCO created the Sexual and Gender Minority Task Force, with the goals of helping oncology practices establish detailed protocols in the collection of sexual orientation and gender identity data to reduce cancer disparities among SGM patients; institute multilevel structural interventions to support SGM patients; and provide training to increase provider and staff cultural competence; among others.
In 2023, ASCO published a report, State of Cancer Care in America: Achieving Cancer Health Equity Among Sexual and Gender Minority Communities, which chronicled the progress made in reducing health disparities among sexual and gender minority individuals with cancer, including an increase in the collection of sexual orientation and gender identity data, while acknowledging that more needed to be done to reduce disparities and advance health equity in this patient population.2
Despite these efforts, two studies presented during the 2024 ASCO Annual Meeting showed how disparities in the care of LGBTQ+ individuals with cancer are even more pervasive than previously believed.3,4 These studies offer insights into the cancer experiences among lesbian, gay, bisexual, transgender, queer, intersex, asexual, and others, as well as the systemic-level barriers that affect LGBTQ+ care in oncology practices and interventions aimed at ensuring equitable cancer care. They also provide insight into how stigma and incorrect assumptions may contribute to medical mistrust and worse experiences for patients.
Shail Maingi, MD, FASCO
“This is a population that has been invisible in many ways, so there is a lack of LGBTQ+-specific cancer research to tell us about the cancer risks, prevalence, and treatment outcomes in these patients,” said Shail Maingi, MD, FASCO, lead author of these studies, a medical oncologist/hematologist at Dana-Farber Cancer Institute (DFCI), and DFCI’s Network Health Equity & Inclusion Liaison. “As a result, we don’t have guidelines on cancer screenings in this population. For example, we know that transgender individuals may be at greater risk for some cancers, but we don’t have the science to develop formal screening guidelines yet.”
Dr. Maingi is also a long-term ASCO volunteer and a member of ASCO’s Diversity and Inclusion Committee, ASCO’s Practice Health Task Force, and Co-Chair of ASCO’s Sexual and Gender Minority Task Force.
Unique Experiences of LGBTQ+ Patients With Cancer
The data reported in the two studies were derived from a large Web-based survey of 817 LGBTQ+ patients with cancer and 115 oncology providers from two academic and five community-based practices nationwide. Participants in the survey included patients with gastric (n = 165), breast (n = 238), ovarian (n = 218), prostate (n = 56), and colorectal cancers (n = 140), including 83 gender-nonconforming patients.
The results showed that most LGBTQ+ respondents (80%) reported not receiving appropriate preventive cancer screening, mainly because their provider did not mention cancer screening (40%); and 28% did not have a health-care provider. In addition, only 24% of respondents felt at least moderately comfortable disclosing their LGBTQ+ status.
Inclusive measures that helped patients feel most comfortable included care teams sharing/displaying their own pronouns (39%); making public statements of support (43%); or wearing personal items indicating acceptance (39%). Of those patients who did disclose their identity, just 50% reported consistently being referred to by their correct names and pronouns. Participants also reported that only 34% of their partners/caregivers felt welcome at medical appointments, and only 4% said they felt respected by their care team.
Findings from the provider portion of the survey showed that 35% of respondents reported feeling unsure how sexual orientation and gender identity affect treatment considerations; 29% said they were unsure how to discuss patients’ sexual orientation or gender identity; and 29% reported systemic barriers that limit inclusion.
In a wide-ranging interview with The ASCO Post, Dr. Maingi discussed the results from her studies and what providers and institutions can do to remove barriers to accessing high-quality cancer care for LGBTQ+ patients and ensure they feel welcome and safe.
Screening Guidelines for LGBTQ+ Individuals at Higher Risk of Cancer
You have been researching health-care disparities in oncology, especially for sexual and gender minority individuals, for many years. Did anything surprise you about these findings?
It was surprising to see how common it is for physicians not to discuss cancer screenings with their LGBTQ+ patients. Routine screening is happening at such a low rate—20%—in this patient population. We know that LGBTQ+ individuals are more at risk for developing certain cancers, including cervical, breast, skin, and oropharyngeal cancers, than heterosexual or cisgender individuals, and there may be unique screenings we want for this population. For example, we know that sexual and gender minority women present with breast cancer at an earlier age than heterosexual women, so we may need to develop different screening guidelines for this population.
When we asked the question about preventive cancer screening, I knew there would be a gap in provider knowledge about the increased cancer risk in these individuals. And the fact that so many patients aren’t disclosing their sexual and gender identity—so physicians don’t even have the opportunity to offer screenings—only worsens the situation.
Making Patients Feel Comfortable
In addition to sharing their own pronouns, making public statements of support, or wearing personal items indicating acceptance, what can oncologists and hospitals do to make LGBTQ+ patients feel more comfortable?
There is a lot that can be done to provide culturally competent care for members of this community, including the avoidance of discrimination, stigmatization, and unconscious bias; educating staff and providers to be comfortable in discussing sexual orientation, gender orientation, and sexual practices; asking patients what their pronouns are, such as she/her/hers, he/him/his, and they/them/theirs; and including the term partner in addition to spouse on intake forms. All of these suggestions make patients feel more comfortable and safer to disclose their sexual and gender identity.
Advancing health equity for the LGBTQ+ community is an ASCO priority, and during the 2024 Annual Meeting, ASCO held the first LGBTQ+ Community of Practice meeting. During the meeting, we learned about the practices St. Jude Children’s Research Hospital has in place to support its LGBTQ+ patients and employees, including creating an identity- and gender-affirming environment; celebrating Pride Month; and developing resources for LGBTQ+ youth, parents, and survivors.
In our studies, we did a good job picking the responses patients identified as being helpful. But I think the main concern LGBTQ+ patients have in the clinical setting is that they want to be seen by medical personnel, and if they are seen as different, they don’t want to be treated less well. Treating patients equally is what is going to make the difference in outcome.
Overcoming the Legal Barriers to Accessing Medical Care
Studies have shown that LGBTQ+ adults struggle to access quality health care for a variety of reasons. There are nine states where it is legal to refuse care for LGBTQ+ patients due to “conscience clauses” that allow providers, staff, and insurers to deny care and services based on personal and religious beliefs.5 Please talk about the barriers to accessing high-quality medical care for LGBTQ+ individuals.
Even though it may be legal in some states for medical personnel to refuse care to LGBTQ+ patients, it is still a violation of medical ethics, and it is a violation of standard practices endorsed by ASCO and the American Medical Association. So far, I have not heard of active cases where LGBTQ+ patients have been refused medical care.
The barriers to accessing high-quality health care are systemic and rooted in stigma, bias, and discrimination. We have inherited these structures that don’t necessarily fit modern society, but they keep LGBTQ+ patients invisible, and that makes it difficult to engage in medical care in meaningful ways. Patients don’t have a positive experience because there are high levels of mistrust. In addition to these factors, some patients are uninsured or underinsured, which also makes it difficult to access care.
LGBTQ+ individuals already have a lifelong mistrustful relationship with medical institutions, and they are meeting us as at a very vulnerable time, so we can’t expect them to trust us the moment they walk in the door— SHAIL MAINGI, MD, FASCO
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There is a huge problem of invisibility of LGBTQ+ patients in research and our own implicit biases that keep participation in clinical trials low. There are other complications that keep participation in trials low as well, including homelessness, mental illness, and substance abuse. All of these factors prevent enrolling patients into clinical trials that may benefit them.
As a result, we are meeting these patients after screening, after diagnosis, and during treatment discussions. LGBTQ+ individuals already have a lifelong mistrustful relationship with medical institutions, and they are meeting us at a very vulnerable time, so we can’t expect them to trust us the moment they walk in the door.
Identifying System Barriers to Care
One of your studies showed that 29% of providers reported systemic barriers that limit inclusion of LGBTQ+ individuals. What were some of those systemic barriers?
A variety of systemic barriers were cited in the study, including “I don’t have an inclusive support group to send these patients to”; “I don’t have a breast cancer support group this person will feel welcome attending”; and “I don’t have an LGBTQ+ caregiver support group.” These kinds of barriers exacerbate feelings that LGBTQ+ patients don’t have a partner in their health care. Other systemic barriers included problems collecting sexual orientation and gender identify information on patients’ electronic medical records.
Reducing Barriers to Cancer Care
Although 84% of the oncologists in your survey reported being moderately comfortable treating LGBTQ+ patients, they overestimated the comfort level of their patients. For example, only 24% of patients reported feeling safe disclosing their LGBTQ+ identity, whereas 65% of physicians thought their patients felt safe. Why do you think there was such discordance between patient and provider responses?
To me, this is part of the invisibility of LGBTQ+ individuals, the lack of medical education in LGBTQ+ care, and the lack of understanding about medical mistrust among this patient population—and how medical mistrust impacts not just LGBTQ+ patients, but other minority patients as well.
Even though LGBTQ+ individuals are presented favorably in our pop culture, and accurate pronouns are often used, that doesn’t mean unconscious bias isn’t still an issue in medicine. It is. However, it is encouraging that about 70% of providers in our survey committed to discussing sexual orientation/gender identity with their patients at their first meeting, so progress is being made.
The bottom line is: in every state, there are LGBTQ+ patients with cancer and medical providers who want them to get high-quality care.
DISCLOSURE: Dr. Maingi has a consulting or advisory role with Prime Oncology and a relationship with Gilead Sciences. She also has an immediate family member who is employed by Merck and owns stock in the company.
REFERENCES
1. 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.
2. Kamen CS, Dizon DS, Fung C, et al: State of cancer care in America: Achieving cancer health equity among sexual and gender minority communities. J Oncol Pract 19:959-967, 2023.
3. Maingi S, Schabath MB, Dewald I, et al: Disparities uncovered: LGBTQ+ patients report on their cancer care journey. J Clin Oncol 42(suppl 16):Abstract 1516, 2024.
4. Maingi S, Schabath MB, Dewald I, et al: Beyond the binary: A transformative implementation science initiative to improve LGBTQ+ cancer care. J Clin Oncol 42(suppl 16):Abstract 11010, 2024.
5. Rubin R: Critics say new state ‘conscience laws’ give physicians carte blanche to refuse patients. JAMA 330:1720-1722, 2023.
