‘Big culture shift’ required to improve cancer care for LGBTQ+ individuals

Individuals who identify as LGBTQ+ continue to face barriers when trying to access high-quality and inclusive cancer care, according to panelists at the annual National Comprehensive Cancer Network Patient Advocacy Summit.

The obstacles are due to multiple factors at policy and practice levels, such as implicit or explicit bias; caregivers and chosen family not being recognized or supported by the health system; and misconceptions or miscommunication on the part of the care team.

These factors may prompt LGBTQ+ individuals to delay seeking medical care or reduce the likelihood that patients who already sought medical attention will receive appropriate care, panelists noted.

“Our data is deplorable in terms of identifying our beneficiaries by sexual orientation or gender identity. It’s a major gap,” Dora L. Hughes, MD, MPH, chief medical officer for the CMS Innovation Center, said during the summit’s keynote address. “It’s one of the areas that we’re specifically focused on, and requirements through our models are clear that we expect our information on our beneficiaries to be shared with us ... [to make sure] they are getting the proper care in accordance with recommended guidelines.”

Discussion at the summit explored two topics directly related to delivery of cancer care — the barriers that make it difficult to identify and address care needs of patients who are LGBTQ+, and policy solutions to advance equitable care for this population.

Breaking barriers

Patients who identify as LGBTQ+ must feel comfortable from homophobia, transphobia and other social determinants, panelists emphasized, because fear of being truthful with clinicians and physicians can result in poor health outcomes.

Speakers in the first panel discussion evaluated interpersonal and practice-level inequities shown to discourage meaningful discourse between patients and providers.

“When people come through our doors, they are coming in with a lot of experience ... and oftentimes a lot of trauma,” said Chasity Burrows Walters, PhD, RN, senior director of patient and community education at Memorial Sloan Kettering Cancer Center. “That creates an awareness — almost a hypervigilance — so when someone walks in, we have to be thinking about [what they may be] noticing, [such as], ‘Is there a stare? Is there a whisper to a colleague?’”

Evidence is limited as to whether the LGBTQ+ population is at increased risk for certain cancers. That must change to better address patients’ needs, panelists said.

“We can’t really say anything — beyond smaller studies — what the population impact is because we don’t have good data,” said Mandi L. Pratt-Chapman, PhD, associate center director for community outreach, engagement and equity at GW Cancer Center. “We can’t diagnosis the severity of the problem or what the specific types of interventions might most benefit populations if we can’t stratify the data.”

Panelists elaborated on what changes should be made moving forward to better address the barriers that exist between patients and health care providers. Solutions could include increased representation of LGBTQ+ identification on forms, more education for clinicians and greater representation of LGBTQ+ individuals in the clinical workforce.

“We collect sexual orientation and gender identity data at [Memorial Sloan Kettering],” Burrows Walters said. “I looked back and the first email that I sent to a colleague about trying to do that was in 2012. We started collecting sexual orientation in 2018 and, in May 2020, we started collecting gender. So, what I’m telling you is it’s not often overnight — this is a big culture shift.”

Policy solutions

More than one in three patients in the United States who identify as LGBTQ+ faced discrimination over the course of a calendar year, according to statistics cited by summit panelists.

In addition, 15% of LGBTQ+ Americans reported postponing or avoiding medical treatment due to discrimination.

Panelists also noted that the psychological well-being of 69% of LGBTQ+ Americans had been affected due to discrimination they faced while seeking care.

These driving factors have led certain individuals to go without crucial cancer screenings or preventive care, such as vaccines.

Potential policy solutions discussed at the summit include ensuring electronic health records include appropriate terms that address how LGBTQ+ individuals identify, and — when a provider collects such information — ensuring questions are asked in an affirming way without discrimination.

“You can get erroneous data if somebody tells you something different about themselves because they’re afraid of what might happen if they disclose who they are,” said Ryne Wilson, DNP, RN, OCN, RN care coordinator at University of Minnesota Physicians.

Panelists also emphasized the need to expand caregiver support eligibility at a federal level, as LGBTQ+ individuals often have close relationships with people outside of the three currently accepted relationship designations.

“You often need caregiver support in order to successfully go through a lot of the really challenging treatments that are associated with cancer care and, right now, [the Family Medical and Leave Act] is only protected for caregivers that are a spouse, a child or a parent,” Wilson said. “There should be a more extended definition of what a caregiver can be because people of the LGBTQ+ community oftentimes have chosen families.”