Groundbreaking LGBTQ Cancer Survey is launched

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Scout of National LGBT Cancer Network, smiling
Scout, Executive Director of the National LGBT Cancer Network

Health care for LGBTQ peoples’ varies widely says survey

The National LGBT Cancer Network has released Out: The National Cancer Survey, the largest-ever LGBTQ cancer survivor survey. The report, based on findings from over 2,700 respondents across the United States, is a massive step in understanding the ways in which LGBTQ people experience cancer and cancer care. The National LGBT Cancer Network hosted an official launch event for the Out Cancer Survey on June 30.

Health care in the United States varies widely, and this report is concerned with how LGBTQ peoples’ identities may affect the quality of the care that they receive. The survey is the largest survey of its kind to have been completed and offers insights into an often underfunded and under-discussed subject. LGBTQ people experience life differently than straight and cisgender people, and that does not stop when it comes to medical care.

“As a trans man myself, I admit I live in fear of needing intensive medical care,” said Scout, Executive Director of the National LGBT Cancer Network. “Considering 40 percent of us will face a cancer diagnosis at some time in our lives, this is an issue many of us will be facing. The fact that more cancer centers are reaching out for training and to do community engagement gives me hope.”

The National LGBT Cancer Network recognizes that LGBTQ cancer survivors have important stories to tell and that it is necessary to uplift survivors’ voices and validate survivors’ experiences. Over 2,000 survivors wrote about what they wanted their providers to change to make care better. Saying things like, “Place visual cues that your clinic or practice is a safe place; these can be in the form of an HRC sticker or a rainbow sticker, or even on your intake forms: They should be INCLUSIVE of all genders and identities.”

Additionally, others wrote that providers should “set up gender-neutral bathrooms, and when told preferred pronouns and names, USE THEM. Do not assume.” One person wrote, “I am a non-binary person who had breast cancer and would prefer terms like ‘chest’ instead of breasts and ‘people’ instead of women.”

Collecting data from LGBTQ survivors is a challenge in multiple ways. There is a general disinterest from the average care provider in LGBTQ experiences, as well as connectivity and isolation issues within the community itself. The “Out” report shows how much can be learned from this data when it is collected.

“This survey has some really positive news,” said Scout. “For example, that many people can get to welcoming cancer care. It also has some very clear areas where the healthcare industry needs to listen and act; for example, how frequently LGBTQIA+ people want tailored resources and how often we can’t find any.”

The report is an effort of partnership with many organizations across the United States who share the same concern for and interest in LGBTQ cancer survivors. The National LGBT Cancer Network has partnered with a number of organizations in order to complete the survey, the lead partner being The Center for Black Equity.

Out: The National Cancer Survey is available to read through on The National LGBT Cancer Network website at cancer-network.org/out-the-national-cancer-survey/.

Journalist Chelsey Johnstone is the Project Manager for Greater Trenton and primary writer for TrentonDaily. She is a senior journalism major at Montclair State University and former communication and music student at Mercer County Community College. While attending her community college, Chelsey led her student newspaper, The College VOICE, as Editor-in-Chief. Now, Chelsey is working to advance her journalist skills freelancing for Out in Jersey Magazine and Unclear Magazine with the hope of positively impacting the world of reporting.