FARMINGTON — As a medical student at the University of Arizona, training to go into family medicine, Karren Seely watched as the curriculum circumnavigated or fully avoided topics relating to the health of lesbian, gay, bisexual, transgender and queer people.

There were no more than three classes over three years that covered LGBTQ issues and most focused on HIV/AIDS, she said. When she moved to Maine for the Maine Dartmouth Family Residency Program in 2011, it got worse.

“The residency was actually more lacking than medical school, oddly enough, even though there were LGBTQ staff,” Seely, 43, said. “That was one of the disappointments. Any training that got done, I had to instigate. It just wasn’t a priority — and that’s understandable because they’re trying to teach so much and the regulatory bodies that manage the education of students weren’t requiring residencies to teach that.”

The knowledge she acquired was through conferences she sought out — and her own lived experiences as a transgender woman.

Barriers like this, far from unique to the Maine Dartmouth program, illustrate one side of a problem many Mainers know well: Quality healthcare for members of the LGBTQ community is hard to come by. Not enough providers are informed enough to administer proper care, and even where there is good service, accessing it can be tough. Patients often face long waitlists or must travel far distances. Some avoid medical appointments altogether out of fear of mistreatment because of their orientation or identity.

About 67,000 LGBTQ people are living in Maine currently, roughly 6,000 to 12,000 of whom are transgender, according to Quinn Gormley, executive director of Maine Transgender Network.

Seely is one of just 22 medical practitioners in Maine — and one of two in central Maine — who are part of the only national network of providers dedicated to caring for the LGBTQ community, the GLMA: Health Professionals Advancing LGBTQ Equality Provider Directory. She works at Farmington Family Practice, under the Franklin Community Health Program of MaineHealth. The second is Maia Pinsky, of Gardiner Family Medicine, who was on maternity leave at press time but will be back in mid-February.

The directory can reveal some surprising statistics. Massachusetts, for instance, has five times the population of Maine, but 13 times the number of LGBTQ-friendly providers. In context, Maine is more rural and Boston is home to one of the country’s leading LGBTQ health care, education, research and advocacy groups, Fenway Health. Still, Maine’s most rural neighbor, Vermont, has less than half the population, but three quarters the number of providers on the directory. There is definitely a shortage of providers in Maine, Gormley said.

“The LGBTQ community is one of the major underserved populations,” Seely said. “For example, lesbian women are more likely to have breast cancer, and we’re not sure why.

“The suicide rate among lesbian, gay and bisexual youth is significantly higher; it’s nine times higher than the national average for transgender people. Nearly 50% of transgender adults have attempted suicide at least once in their life. There’s a higher rate of smoking and substance use, and this is all largely attributed to societal stigma and the chronic trauma that is associated with that.”

While some LGBTQ health needs are specific to the community, like hormone therapy or sex reassignment surgery, health professionals familiar with the population, research institutes and advocates say that most care belongs in primary care or family medicine settings. Much of the required care is universal — treating sore throats, allergies, infections, pains and sprains or other conditions like heart disease, diabetes and cancer. Other needs simply require awareness: knowing that just because a lesbian woman is not having penetrative sex with men, she still needs gynecological exams; that because estrogen is a risk factor for breast cancer, transgender women over 50 who have been taking estrogen for more than five years should receive mammograms; and so on, according to Gormley.

“Treating (the LGBTQ community) is not particularly complicated,” Seely said. “You just need to be familiar with the standards of care and get to know the patients.”

Quinn Gormley Courtesy of Quinn Gormley

Gormley echoed that sentiment.

“The view that LGBTQ care is a specialty is unfortunate, because something we hear a lot from doctors we train is that they don’t think they have a lot of LGBTQ patients, which means they don’t have the right data,” said Gormley, who runs dozens of trainings a year in Maine and has educated thousands of medical providers. “A lack of education and normalcy in LGBTQ health issues results in a lack of competent care.

“A lot of doctors are nervous about being labeled as the queer or trans doctor because very quickly they end up having a practice that’s only queer and trans — and I don’t know why. I think we’re great patients.”

Gormley vividly recalls one of the low moments in her own healthcare history. Seven years ago, she went to an emergency room in Lincoln County after breaking her arm while working at a wood shop.

“I sit down at the check-in desk with teary eyes because my arm was broken, and across from me is this girl who was in my homeroom in high school and who I had gone to school since kindergarten with,” Gormley said.

“She knew exactly who I was. I had just come out, and my ID and insurance card didn’t match, and she told me that the emergency room wouldn’t provide care for me because my identifications didn’t match, and she told me to try another hospital. This was a person who knew who I was and knew why my information wouldn’t match. It was a hospital where I had received all my care for 20 years.

“Bureaucratic things like that happen a lot, and it’s incredibly embarrassing and often the excuse for providers — and even more often front-end workers who don’t want to deal with you because of your orientation or identity — or they don’t want to solve the problem of someone who doesn’t fit through the system easily.”

RURAL HEALTHCARE

Nowhere in Maine do the issues of accessible and quality LGBTQ healthcare intersect stronger than they do in its rural areas.

Census data shows that nationwide, people in rural communities are more likely to have low incomes and less likely to have health insurance. LGBTQ populations are also more likely to have low incomes and less likely to have health insurance.

“LGBTQ healthcare is an area of inequity everywhere in the United States,” Gormley said. “I think what makes Maine unique is that the intersection of rural healthcare and poverty is particularly strong for us.”

As of 2016, Maine was the most rural state in the country, with 61.6% of its population considered rural.

“LGBTQ people living in rural areas are at a statistical disadvantage,” Gormley said. “Maine’s rural health system is lacking already — these are the people already struggling to meet the basic needs of the communities they serve. Anyone else who isn’t going to fit cleanly into expectations of what those needs are is going to struggle.”

It is in this realm where providers like Seely are setting an example for the state. While she moved to Maine in part to escape the Arizona heat and in part because she was drawn to the Maine Dartmouth program, she said she decided to continue practicing in Farmington for a reason.

“And that’s because physicians are needed the most in the rural areas, and I knew that LGBTQ-friendly physicians would be needed even more than just any other physician in rural areas,” she said.

Right now, she is the primary care provider for 1,700 patients, about 5% — roughly 85 — of whom are LGBTQ, she said. Some come to Farmington from smaller towns such as Rumford and others from bigger cities including Bangor, Lewiston-Auburn and Augusta.

Currently at capacity, the only new patients Seely will take on are LGBTQ.

“I don’t believe we’ve reached that point,” Seely said about having to turn LGBTQ patients away. “We’re trying hard not to reach that point — that’s partly why I’m only accepting LGBTQ patients at the moment.

“Generally it isn’t like a floodgate kind of situation. It’s more here and there. People come in and then I accept them and get them the help they need. Sometimes I work as a consultant for local providers who just haven’t felt comfortable or experienced enough to help their LGBTQ patients.”

Dr. Karren Seely is one of 22 medical practitioners in Maine and one of only two in central Maine who is part of a national network of providers dedicated to caring for the LGBTQ community. She is shown last week at Farmington Family Practice, where she sees patients.

SEELY’S APPROACH

Hanging up in the four rooms where Seely sees patients at Farmington Family Practice are lists of resources from OUT Maine, an organization that empowers and educates rural LGBTQ youth in Maine; brightly colored flyers titled “Gender 101” and rainbow-colored stickers indicating that the rooms are safe spaces for LGBTQ folks. Visible signs of support, she said, can help put patients at ease.

“I know some of my patients have had bad experiences (with doctors) in the past, and they’ve expressed that to me but I don’t really ask for details,” Seely said. “Mostly I just apologize and tell them that this is a safe space.

“I know sometimes it’s outright hostility from doctors and sometimes it’s just the ignorance side of things. On rare occasions, patients end up getting triggered and they hear what they’ve heard in the past, and it may not necessarily be what the provider was trying to do.”

Some of the best ways for doctors to avoid harming LGBTQ patients, Seely said, are to not misidentify their names, gender identities or sexualities and to use their preferred pronouns, such as she/her/hers, he/him/his, or the gender-neutral they/them/their.

“The best way to do that is to ask the patients,” Seely said. “When in doubt, the biggest thing is: don’t make assumptions. In our charts, we have the patient’s name that they go by, whether it’s legal or not, listed there, and what their preferred pronouns are.”

When she sees her patients, Seely makes sure to ask if the names and pronouns on file are still accurate. She hopes that in the future, intake forms at Farmington Family Practice and elsewhere will ask patients to self-identify sexual orientation and gender identity to make the sharing of that information easier for people. It can be difficult to bring up without being prompted.

“Understanding that coming out isn’t a one-time experience” is something that is important for doctors to keep in mind, Seely said.

“It’s a lifelong process, because for the most part, people don’t know you’re LGBTQ unless you tell them, so every time you encounter somebody you’re thinking about who is safe to talk to about that versus not and that kind of thing. It’s important to understand that that’s a constant process, and even when they’re coming to see their doctor or their doctor’s staff, any negative experience can be significantly magnified.”

She cautioned that doctors must especially value confidentiality with LGBTQ patients.

“Outing patients, particularly minor patients, importantly, is right up there with the complications of, say, dealing with pregnant teenagers,” Seely said. “It can be outright dangerous. Teenagers can get thrown out of their home.”

According to the Center for American Progress, while LGBTQ youth comprise between 5% and 10% of the youth population, about 40% of the homeless youth population is LGBTQ. 

This reality is hard for Seely to forget: She was kicked out of her own home at age 20 when she came out as a transgender woman to her birth parents.

A screenshot of Maine Transgender Network’s new Queer Health Community Database, which helps members of the LGBTQ community find health providers who can give them quality care.

ROLE OF DIRECTORIES 

Provider directories, like the one from GLMA: Health Professionals Advancing LGBTQ Equality, are a boon to accessible care for the LGBTQ community. They are an anonymous way to find reliable — for the most part — medical care. They are also a modern version of the whisper networks that allowed the LGBTQ, and especially trans, community to find good doctors during a time when, as Gormley said, “it was considered best practice for providers who served us to actively prevent us from talking to each other.”

“With the policing of gender identities, doctors figured out pretty quickly that when we talk to each other, we tell each other the answers to things that get you through,” she said.

There are no formal training requirements (or fees) for doctors to register for and appear in the GLMA: Health Professionals Advancing LGBTQ Equality directory, and because of that, the organization has struggled to vet every provider on its list. One Albion-based provider, for example, is still on the directory, despite having left the practice at least a year ago, according to an official at the Lovejoy Health Center. But seeking inclusion on the resource, despite its flaws, can indicate that a provider is at least interested in reaching out to the LGBTQ community.

“Being a part of a list really shows — it’s a huge first step for a lot of people,” said Scott Nass, president of GLMA: Health Professionals Advancing LGBTQ Equality and a family physician in Palm Springs, California.

“I know a lot of people welcome LGBTQ folks in their practice but hesitate to put (their) name on the list. But letting the LGBTQ community know you’re there available, offering whatever support or expertise you can, is really important.”

The organization asks providers to take steps to make their practice more inclusive and continue to educate themselves in the latest standards of care for the LGBTQ community, Nass said. An impending update to the database will include more avenues for patients to submit feedback about their experiences with particular doctors.

MaineTransNet has been building a Maine-specific provider directory for the LGBTQ community, called the Maine Queer Health Community Database. Currently in its beta form, there are already 30 provider listings and Gormley said she expects about 50 by the end of February.

“Our thought in investing in a database was: aggregate and put the information in a central space so everyone can access it,” Gormley said. “We want it to be able to be more specific (than GLMA: Health Professionals Advancing LGBTQ Equality) and something that’s really designed for Maine. It’s not helpful for someone in Presque Isle that there’s a really great doctor in Portland.”

In the Maine Queer Health Community Database, there are options for community members to leave reviews, and there are also more specific search categories. For instance, people can look for providers based on region and whether or not someone accepts MaineCare.

“You can also search using a broader definition of provider,” Gormley said. “In addition to medical and mental health providers, there are safe people on the database to go to to get your hair cut or for hair removal — just a broader scope of wellness care.”

Outside of the directories, many members of the LGBTQ community also share information about good — or bad — providers over Facebook groups and other social media.

HOPE

Despite challenges that persist, Maine has come a long way in recent years in terms of addressing health inequities in the LGBTQ community.

Penobscot Community Health Care has been recognized by the Human Rights Commission for the past eight years as an LGBTQ Healthcare Equality Leader. In 2015, the Barbara Bush Children’s Hospital at Maine Medical Center opened the state’s first-ever gender clinic — though there is a waitlist for appointments. The Mabel Wadsworth Center in Bangor was awarded MaineTransNet’s first-ever accolade for outstanding transgender healthcare in 2019.

The Health Equity Alliance founded Maine’s first annual LGBTQ+ Healthcare Conference in 2015, held in Augusta, and in Lewiston, Bangor and Farmington in successive years.

The overall expansion of MaineCare and the addition of transgender medical care coverage have “created a massive change in the conversation just in the last six months,” Gormley said. MaineTransNet is currently working on defining the boundaries of that coverage, which Gormley said was left vague by the Department of Health and Human Services.

In the future, she hopes to see legislation that would increase MaineCare reimbursement rates so that more providers are willing to work with patients on MaineCare.

Another part of Gormley’s vision for a better Maine circles back to what Seely noticed was lacking in her medical school and residency programs: universal education on the LGBTQ community at-large.

“Other states have started requiring practitioners to include LGBTQ competency within their continuing education and within medical and social work education — we’d really like to see that become a requirement in Maine,” Gormley said. “Most practitioners are well-intentioned but nervous — they don’t want to hurt anybody — and I think once they’ve had the ability to have the things that make them anxious addressed, they’d become more enthusiastic about providing care to our community.”

It boils down to this, Gormley said: “If (doctors) were more familiar with our bodies, they’d know how to treat our bodies better; if they knew how to talk to us, we’d be more comfortable talking to them. Health inequities in the LGBTQ community are a result of stigma and a lack of access, not because our bodies are different.”