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NCCN Policy Summit: The Value of Empathy and LGBTQ+ Representation

December 22, 2022
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This is the final post in a blog series on the National Comprehensive Cancer Network (NCCN) Patient Advocacy Summit: Best Practices and Policies for Addressing the Health Needs of LGBTQ+ Cancer Patients and Survivors. This event was held virtually and in person in D.C. on Friday, December 2, as part of the NCCN's annual policy summit series. You can read our first blog covering the December summit here.

Bravery—that was the major theme during the opening panel at the NCCN Patient Advocacy Summit. Panelists shared compelling stories, as they highlighted the barriers that can prevent lesbian, gay, bisexual, transgender, queer and/or questioning, and other community members (LGBTQ+) with cancer, as well as survivors, from accessing high-quality, equitable care. The concerns and issues raised by panelists were followed by a discussion on the best practices healthcare organizations can adopt to accommodate the needs of LGBTQ+ patients—a series of sessions presented by invited patient advocates. 

Sean Cahill, PhD, is the director of Health Policy Research at The Fenway Institute. Dr. Cahill discussed the effects discrimination can have on members on the LGBTQ+ community. “More than 1 in 3 LGBTQ Americans faced discrimination in the past year,” he said. “15 percent of LGBTQ Americans report postponing or avoiding medical treatment due to discrimination.” According to Dr. Cahill, discrimination is an important public health and healthcare access issue—so healthcare organizations must do more to mitigate their effects. 

“Your bathrooms should be degendered; it is insane that we still have gendered bathrooms. Gowns matter, [and] the way gowns go matters,” said Darryl Mittledorf, LCSW, executive director and founder of Malecare at the National LGBT Cancer Project. “Train your staff, practice with them. Let them know how to interact with LGBTQ+ people. Do not think a cultural literacy course is sufficient.” 

And within the opening panel, Archana Pathak, PhD, interim director, Q Collective; special assistant, Programs and Initiatives; and associate professor of Gender, Sexuality, and Women’s Studies at Virginia Commonwealth University, also highlighted the importance of healthcare organizations conducting staff training. “The training of front office staff on how to use data effectively is important,” Dr. Pathak said. “People’s legal first names work like a social security number. You don’t just go out saying that everywhere.” 

According to Mittledorf, cancer amplifies the loss of power and personal agency throughout the life of a member of the LGBTQ+ community. “When seeking healthcare assistance, LGBTQ patients feel scared, alone, and…a mistrust of the healthcare provider and the institution they represent,” Mittledorf said. “You are seeking lifesaving treatment from an institution that does not seem to understand or represent you and your community.” 

Enhancing Representation in Data

The summit’s panelists for “Policy Solutions to Advance Equitable Cancer Care for LGBTQ+ Community” discussed steps that can be taken to improve access to equitable care for the community. Each panelist agreed that sexual orientation and gender identity (SOGI) data collection is a crucial part of this process. “We don’t collect that [SOGI] data because all the NIH [National Institutes of Health] cares about is male and female. This is something that we have been talking about a lot in the NIH,” said Karen L. Parker, PhD, MSW, director of the Sexual and Gender Minority Research Office at the National Institutes of Health. 

Dr. Cahill shared a similar view, highlighting the dearth of actionable data that exists among LGBTQ+ patients. “We do not have data, the basic information for our community,” Dr. Cahill explained. “If you don’t count us, we don’t count.” Scout, PhD, executive director of the National LGBT Cancer Network, echoed Dr. Cahill’s sentiment by describing the lack of SOGI data collection as a “systematic erasure.” 

Earl Fowlkes, president and chief executive officer at the Center for Black Equity, asserts that the lack of data on LGBTQ+ patients with cancer mitigates the possibility of future studies focused on the community. “Dollars follow the data,” Fowlkes said. Scout believes this reality is particularly concerning, as an increasing number of people now identify as members of the LGBTQ+ community. “Disparities get widened, [and] if we are not identifying these disparities, we will have more people with later cancer diagnosis, which means horrible things for the person, their family, and incredible financial toxicity,” said Scout. 

As solutions aimed at bridging the gap in knowledge created by a lack of SOGI data are proposed, Scout maintains that healthcare organizations must take on a greater responsibility in solving the problem. “I have worked all my adult life, and I [can] count on one hand how many policy wins we have,” Scout said. “This is not waiting for your lawmakers to do something—this is about what your administration is doing.”

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