Mindful of heightened barriers faced by LGBTQ+ patients seeking high-quality cancer care, the National Comprehensive Cancer Network (NCCN) held a patient advocacy summit in Washington, DC, to focus on confronting and correcting inequities for these individuals.
LGBTQ+ patients face unique challenges in accessing cancer care, said Wui-Jin Koh, MD, Chief Medical Officer for the NCCN. He noted that they may face implicit and explicit bias-homophobia and transphobia-misconceptions, potential misgendering, and lack of gender identity, which can put them at risk for poor care. He also noted that many health care providers lack the awareness of how best to help this group.
Feelings of vulnerability and fear of being judged when approaching medical professionals leads to delay in cancer screening and treatment in these minority groups. The pandemic didn't help. The National LGBT Cancer Network estimates that LGBTQ+ individuals have skipped about 500,000 cancer screenings since the COVID-19 pandemic began.
According to a 2022 Gallup poll, about 7.1 percent of the U.S. population self-identifies as belonging to a sexual orientation/gender identity (SOGI) minority. One of the key themes of the NCCN advocacy summit was the lack of data on cancer for members of the LGBTQ+ community, a data gap which can be harmful.
"If you don't count us, we don't count," said Sean Cahill, PhD, Director of Health Policy Research at the Fenway Institute. When it comes to applying for research grants, "I was told the dollars follow the data," said Earl Fowlkes, Jr., President and CEO of the Center for Black Equity. So, in a chicken/egg conundrum, if the data aren't there on cancer in the LGBTQ+ community, it is hard to apply for and gain funding to launch studies to gather it.
"It's very easy for people to be erased," said Karen L. Parker, PhD, MSW, Director of the Sexual & Gender Minority Research Office in the National Institutes of Health (NIH). "To improve cancer-related health outcomes for sexual and gender minority communities, we must first ensure that data on sexual orientation, gender identity, and variations in sex characteristics are collected, analyzed, and reported so that our understanding of potential health disparities and outcomes is enhanced."
Ironically, Parker noted that the NIH's past well-intentioned initiative to enroll more women in clinical trials may have had the unintended consequence of reinforcing male and female gender stereotypes. Today, she said, NIH is looking to update clinical trial enrollment tables to include SOGI data.
"It is critical to collect SOGI data in all research to guide the best clinical care for sexual and gender minorities in the future," said Mandi L. Pratt-Chapman, PhD, Associate Center Director for Community Outreach, Engagement and Equity at the GW Cancer Center. "Right now, we have very little evidence on which to guide clinical care management due to an historical lack of SOGI data collection," added Pratt-Chapman, who is also Associate Professor of Medicine at the GW School of Medicine and Health Sciences.
A 2011 Institute of Medicine report on LGBT health noted the critical lack of data on cancer in this population. A March 2022 NIH-commissioned consensus follow-up report from the National Academies of Sciences, Engineering, and Medicine focused on how to collect data on sex, sexual orientation, gender identity, and intersex status across domains that include clinical settings and population surveys. One important area critically in need of research data is best practices on breast and cervical cancer screening for transgender individuals.
"As health care professionals, we learn to treat patients without discrimination," said Admiral Rachel L. Levine, MD, Assistant Secretary for Health in the Department of Health and Human Services, in a welcome message. She noted that "diversity makes us stronger," and when it comes to an inclusive approach to governing, "as a nation we can do better; we must do better and we will do better."
In a keynote address, Dora L. Hughes, MD, MPH, Chief Medical Officer for the Centers for Medicare and Medicaid Innovation (CMMI), emphasized that CMMI is now placing much greater emphasis on the importance of SOGI data. She said the agency is trying to ensure that its 10-year vision statement embeds health equity throughout, so that its innovative models of care have increased participation of underserved populations. Hughes cited the voluntary Enhancing Oncology Model, which launches in July 2023. A successor to the Oncology Care Model (OCM), the new payment model-which focuses on value-based care and incorporates lessons from the OCM-requires a health equity plan from applicants who want to participate.
Speakers at the advocacy summit described patterns of feeling unwelcome and encountering discrimination in seeking cancer care. "When people walk through our doors, they are coming with a lot of experiences and trauma," said Chastity Burrows Walters, PhD, RN, Senior Director for Patient & Community Education at Memorial Sloan Kettering Cancer Center. So what they need is a strong support network, she emphasized.
Cahill said that, in a 2020 national survey, one-third of LGBTQ+ patients and more than 60 percent of transgender patients reported that they had experienced discrimination in health care. Discrimination can lead to delays in seeking care. The American Association for Cancer Research's 2022 Cancer Disparities Progress report cites data from a recent survey showing that almost one in five (18%) members of sexual and gender minorities said they have avoided seeking medical care because they were afraid they would be discriminated against because of their sexual or gender identity.
"I am 1 year late on cancer screening" because of concerns about provider acceptance, said Scout, PhD, Executive Director of the National LGBT Cancer Network. He noted that this network works to correct inequities by offering helpful resources, including free virtual support groups and provider training (https://cancer-network.org).
"Cancer amplifies the loss of power and personal agency throughout LGBTQ life," said Darryl Mitteldorf, LCSW, Executive Director and Founder of Malecare, a nonprofit men's advanced cancer survivor organization. To counter this vulnerability, he said patient waiting rooms should be "as welcoming as your living room." He said "other" should never be an option on an intake form, and advised that patients should be asked in advance questions such as "What is your lifestyle like?" He added, "Your bathrooms should be degendered." Does the waiting room have magazines that reinforce male and female stereotypes? "Colors of gowns matter; the way gowns open matters," he said. Speakers said the color pink is a hot button issue for them because it is so strongly associated with the female gender.
Language also matters, said speakers. Careful use of terminology and pronouns can create a more welcoming environment, said Scout. Tanya Fischer, MEd, MSLIS, NCCN Senior Medical Writer for Patient Information, noted that "we're very particular about our language" in patient guidelines, which are gender-inclusive. For example, she said the NCCN Guidelines for Patients might say "those with bone cancer," and "those with ovaries" and "those with testicles."
"I don't understand why we have a health care system in which anyone isn't treated as a whole person; that is a failure of medicine," said Archana Pathak, PhD, Interim Director of the Q Collective, Special Assistant for Programs and Initiatives and Associate Professor of Gender, Sexuality and Women's Studies at Virginia Commonwealth University. She has had a nurse walk out and refuse to treat her, and has even experienced discrimination to the point of being threatened with calling the police. She urged health professionals to act with "assumptive compassion," and said, "Let me just be a vulnerable human trying to face a scary time."
"We need access, acknowledgment, and awareness," said Paula Chambers Raney, a Stage I colon cancer survivor, advocate for screenings in LGBTQ+ communities of color, and Hope Coordinator for Fight Colorectal Cancer. "A lot of people don't want to come in because they don't know how to present who they really are," she said. Chambers Raney, who was diagnosed in the emergency department after a delay in diagnosis and has a wife, decried the fact that often a partner of choice cannot accompany a member of the LGBTQ+ community to medical visits.
Identifying a primary caregiver of choice and counting that person as such throughout treatment is very important to an LGBTQ+ patient, said Ryne Wilson, DNP, RN, OCN, the RN Care Coordinator for University of Minnesota Physicians. He said what is needed is a more expansive definition of what and who a caregiver can be. For an LGBTQ+ patient, that caregiver may be a person of choice who is not biologically related.
To improve care for LGBTQ+ patients, SOGI information should be incorporated into professional education from course work through clinical training, said Pathak. "It can't be a unit," she stressed.
"We must acknowledge that discrimination plays a factor in patient care. We need more access on all spectrums of the patient experience and equality for all in medical care," summed up Chambers Raney.
Peggy Eastman is a contributing writer.