Advocates call on cancer community to focus on LGBTQ+ health

Approximately 7.1 percent of Americans identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ+). This translates to approximately 1.4 million LGBTQ+ cancer survivors, said speaker Matthew Schabath, PhD, of Moffitt Cancer Center. Seven cancers affect LGBTQ+ people at higher rates: anal, breast, cervical, colorectal, endometrial, lung, and prostate.

A case-control study by Erik Eckhert, MD, MS, of Stanford University, presented in a separate poster session at ASCO, highlighted disparities in breast cancer. This type of study compares a group of people with a disease to a similar group of people who do not have a disease. The goal is to see whether differences in lifestyle habits or environment may have influenced the development of disease. Dr. Eckhert found that people with cancer who were sex and gender minority were diagnosed later after first noticing symptoms — at a median of 64 days, compared to 37 days. These people received the same treatments but were less likely to undergo breast or chest reconstruction or to follow treatment recommendations (for example, staying on anti-estrogen therapy for at least five years). Their breast cancers were more likely to come back after treatment (31 percent, versus 14 percent).

Few studies like this exist. Instead of trying to understand disparities, conversations around LGBTQ+ health often turn to hormones. Joshua Safer, MD, of Mount Sinai asks that, rather than focusing on hormones, which are relatively safe, greater attention be paid to disparities in health care delivery. Dr. Safer noted that LGBTQ+ people face barriers and biases at all points in the health care experience.

In the session, Dr. Safer and other panelists called on the cancer medical community to:

Use correct terms

The first step to providing high-quality health care is treating people with respect. Know and use correct pronouns.

Be aware of language and stay current with changes. Terminology is fluid. Words that were acceptable yesterday may no longer be acceptable today. For example, the term gender dysphoria, once used by mental health professionals, is going away.

Remove gendered language and images, especially in prevention and treatment guidelines. ASCO and the American Cancer Society have already taken steps in this direction. The National Comprehensive Cancer Network is expected to do so soon. Clinical trial guidelines need to be addressed, too. Most refer to men or women; non-binary and transgender people would not know if they are eligible for trials and, rather than learning more, may miss the opportunity to receive a promising new treatment.

Gather data

The panel pointed out that only 50 percent of National Cancer Institute-designated cancer centers gather basic demographic data needed to track LGBTQ+ patients’ experiences and outcomes. According to a recent JCO Oncology Practice article co-authored by Dr. Schabath, most oncology practices do not gather basic demographic data needed to track LGBTQ+ people’s experiences and outcomes. A recent survey of ASCO members showed only 40 percent knew that patients were asked about sexual orientation. As a result, little information exists about how cancer may affect them. ASCO now promotes the collection of sexual orientation and gender identity data, but confusion and disagreement on how best to do this still exists.

Dr. Schabath shared four questions that their institution uses, including:

• sex assigned at birth
• current gender (female, male, transgender, two-spirit, or open-ended response to include a different term)
• sexual orientation (lesbian or gay, straight, bisexual, two-spirit, open-ended free text response)
• a question that asks if people have ever been diagnosed with an intersex condition or difference of sexual development

Ash Alpert, MD, MFA, of Brown University pointed out that people may need to check more than one box. They also noted that “sex assigned at birth” can be a triggering question, yet it needs to be asked. Specific questions such as, “do you have a prostate?” can gather information in a less biased way. By involving LGBTQ+ people, the cancer providers can learn ways to gather information without causing harm.

Living Beyond Breast Cancer and our partners at FORCE are interested in learning more about how different organizations collect and use demographic data to serve the needs of LGBTQ+ people with breast and other cancers. Look for news in the coming months to learn more.

Ask questions instead of making assumptions

Providers bring biases and assumptions about people based on gender or sexuality that interfere with health care. This problem is not limited to unwelcoming medical practices. Scout, PhD, MA, of the National LGBT Cancer Network shared video of people describing delays in diagnosis due to assumptions made by doctors. Dr. Scout emphasized the need for doctors to ask patients questions rather than make assumptions about their preferences or lifestyle.

Create a safe and welcoming environment

In a national cancer survey of 2,700 people, 88 percent said there was no indication that the hospital or cancer center where they went for care was a welcoming space. People want assurance that they will be welcome prior to seeking care. This can be accomplished by updating language on websites. On site, rainbow flags and affirming messages can let people know they are safe.

LGBTQ+ people sometimes put off health care to avoid negative experiences with new providers or uncomfortable situations. Experiences range from triggering questions to open hostility to inappropriate medical exams. Some changes may be easy to make — like reducing the feminization around mammograms. Trans men may not be comfortable changing or waiting in the women’s changing room.

Others are deeper and reflect the need to adapt care to the needs of trans people. For example, cancer treatment focuses on preserving body parts. Yet, some trans people might prefer to have body parts such as ovaries removed.

Improve medical education

Change begins with educating clinicians and medical staff about the needs of LGBTQ+ people. In a related poster presentation, Dr. Schabath reported on a national study of 300 medical students about their preparedness to treat LGBTQ+ patients. Medical students are comfortable and willing to care for LGBTQ+ patients. Yet, they have limited knowledge of LGBTQ+ health and cancer needs. Medical schools can address this gap with more education and training, especially in the needs of transgender and non-binary health.

With these changes, the cancer community can begin to realize the vision in the theme of this year’s ASCO – Advancing Equitable Care Through Innovation.