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health care survey

Recently, 1,150 members of the LGBTQ+ community participated in including Micah Schneider, from Ronkonkoma, above. Photo rom Lisa Czulinski

In a first of its kind survey of 1,150 members of the LGBTQ+ community on Long Island, Stony Brook Medicine found that people in this group struggle with numerous health care challenges.

Stony Brook Medicine’s Dr. Alison Eliscu was the principal investigator of the study that 1,150 members of the LGBTQ+ community recently participated in. Photo from Stony Brook Medicine

Over two in five people responding to an online survey between June and September of 2021 said they were in fair to poor mental health. Additionally, about one in three people had thoughts of self harm, while 23.9% had seriously considered suicide within the past three years.

People in the LGBTQ+ community are struggling with mental health and access to care, while they also have had negative experiences with health care providers, who may have been making incorrect assumptions about their lives or who haven’t respected them, said Dr. Allison Eliscu, principal investigator of the study and medical director of the Adolescent LGBTQ+ Care Program at Stony Brook Medicine.

Partnering with 30 Long Island-based community leaders and community organizations, including Planned Parenthood, Stony Brook Medicine created the survey to gather the kinds of data that could inform better health care decisions, could provide a baseline for understanding the needs of the LGBTQ+ community in the area, and could shed light on the disparity in health care for this community.

“The idea [for the survey] came out when we were creating the Edie Windsor Healthcare Center” in Hampton Bays, Eliscu said, which opened its doors in 2021 and is the first such center for the LGBTQ+ population on Long Island. “We were trying to think about what we want [the center] to provide and what does the community need.”

Without local data, it was difficult to understand what residents of Long Island, specifically, might need.

The data suggests a disparity between the mental health of the LGBTQ+ community in the area and the overall health of the population in the country. 

Over half of the people who took the survey indicated that they had symptoms of chronic depression, compared with 30.3% for the nation, based on a 2020 PRC National Health Survey. Additionally, 23.9% of the LGBTQ+ community described a typical day as “extremely or very stressful” compared with 16.1% for the nation.

To be sure, the national data sampling occurred just prior to the start of the COVID-19 pandemic, in February of 2020, while the Stony Brook Medicine survey polled residents during the second year of COVID.

Nonetheless, Eliscu suggested that her anecdotal experience with her patients indicates that the LGBTQ+ community likely suffered even more during the pandemic, as some people lived at home with relatives who may not have been supportive or with whom they didn’t share their identity.

Additionally, the isolation removed some LGBTQ+ residents from an in-person support network.

Stony Brook Medicine has taken steps to provide specific services to residents who are LGBTQ+. People who are transitioning and have a cervix continue to need a pap smear.

Some members of the transgender community may not be comfortable going to a gynecologist’s office. Stony Brook Medicine has put in place extended hours to meet their needs.

Micah Schneider, a social worker who lives in Ronkonkoma, served as a survey participant and also as a guide for some of the wording in the survey.

Schneider, who identifies as nonbinary and transgender and prefers the pronoun “they,” said the survey can help people “recognize that we’re not alone.”

When Schneider was growing up, “I had a sense that I was the only person in the entire world dealing with this,” which included a struggle with identity and mental illness.

“We as a community have each other and we can lean on each other,” Schneider said.

As for medical providers, Schneider suggested that this kind of survey can alert these professionals to the need to honor names, pronouns and identities and not make blanket assumptions.

Despite some improvements, the local and national LGBTQ+ community remains at risk, Schneider said.

“There are any number of people who are actively considering suicide,” Schneider added. “It’s a very real crisis in our community.”

On a conference call announcing the results of the survey, Dr. Gregson Pigott, Suffolk County Commissioner of Health, described the survey, which Stony Brook plans to repeat in a couple of years, as “groundbreaking. What you have here is hard data based on the survey.”