Help and Hope

For trans patients, high-quality primary care is a crucial part of the journey

By Jane Latus

When most cisgender people – unfortunately, even some doctors – think of medical care for transgender people, their thoughts are likely confined only to this group’s unique needs, like hormone replacement therapy, gender confirming surgery and vocal therapy.

But transgender people need primary medical care just like everyone, and face the hurdle of finding a doctor who is well-versed in transgender health care, and who will treat them with respect and as a whole person. The difficulty of finding such a doctor keeps nearly a quarter of transgender Americans from even trying.

Fortunately for Connecticut’s trans residents, there is Middlesex Health, where primary care doctors in 12 locations are trained experts in caring for trans, non-binary and gender-queer patients as part of the Middlesex Health Transgender Medicine Program.

Other Middlesex staff members are also trained to provide comprehensive and respectful care to LGBTQ patients, allowing patients to have a positive experience with the health system. As a result, the Human Rights Campaign Foundation has for the past three years designated Middlesex Health an “LGBTQ Healthcare Equality Leader.” The Transgender Medicine Program, ever-growing thanks to word of mouth since its 2016 inception, now provides care to more than 1,000 patients.

Laurel Slongwhite, MD is one of Middlesex Health’s family doctors, practicing in Madison. “This program is the entire reason why I took this job,” says Dr. Slongwhite, a lesbian who acquired a passionate interest in LGBTQ health as a medical student, after finding the curriculum entirely absent of training for LGBTQ patient care.

At first, she says, her patients were mostly referrals from other doctors such as endocrinologists, but word of mouth has made primary care at Middlesex so in-demand that now, she is frequently the first doctor that trans patients seek.

“People are very grateful we are here. Patients will go out of their way to see a provider that they know will be knowledgeable and welcoming,” she says.

The importance of having a primary care physician, as opposed to seeing random doctors during health emergencies, is “We know about our patients, their personal lives as well as their health, and are able to put into context a whole person,” says Dr. Slongwhite.

She remembers if someone complained of heartburn several months back and can judge whether it is related to their current problems. She knows if someone has lost a pet. She knows when screening tests are due. She knows her patients’ family histories.

Importantly, Dr. Slongwhite also knows when a health issue is not related to being trans. “There are many trans people who feel there’s been too much focus on their identity when it isn’t relevant,” she says.

For these and many more reasons, she says, a primary care doctor is “especially valuable for trans people.”

Trans Patients Commonly Avoid Care

Without doctors like those at Middlesex Health, trans patients nationwide report negative medical care experiences ranging from the aggravating to the serious.

“It’s fairly well documented that trans and gender non-conforming people have less access to health care, and one reason is deliberate avoidance,” says Dr. Slongwhite.

A 2015 survey by the National Center for Transgender Equality found that in the previous year, “23% of respondents did not see a doctor when they needed to because of fear of being mistreated as a transgender person.”

That fear was well-founded, as the survey also reported:

33% of those who had seen a health care provider in the prior year “reported having at least one negative experience related to being transgender, such as verbal harassment, refusal of treatment, or having to teach the health care provider about transgender people to receive appropriate care.”

15% reported that a health care provider “asked them unnecessary or invasive questions about their transgender status that were not related to the reason for their visit”

13% said that a provider attempted to convince them to undergo conversion therapy

Dr. Slongwhite has herself heard of patients’ negative experiences that have ranged from “on the most benign end, having providers who aren’t knowledgeable – and that itself is off-putting when you’re going to someone who is supposed to have an area of expertise – to having experienced harassment in doctors’ offices, or being denied services either through insurance or by providers.”

A trans male friend of hers with uterine cancer was denied insurance coverage for doctor-recommended surgery, because the insurance company considered it a trans-related procedure when it was actually standard of care for the diagnosis. Fortunately, his family had the means to pay for his surgery. This, she adds, is why it’s necessary to see a trans patient as a “whole person” and not just trans. “This is far from isolated. There are cases of people who’ve died from terrible cancers because of refusal by insurance and care providers.”

Knowledgeable Primary Care is Key

Finding a doctor who understands their health needs is an enormous relief for trans people, including in ways cisgender folks might not realize. At Middlesex Health, trans patients can be comfortable knowing they will get expert care, minus hassles, and be welcomed by the staff from the top on down.

This saves patients from either avoiding care or suffering through mightily uncomfortable situations. Imagine, for instance, a trans man having to wait in an ob-gyn’s office for a pap smear. Or a trans woman having to explain to an uninformed doctor why she needs a prostate exam. And that upper respiratory infection? A doctor at Middlesex Health will know that it has absolutely nothing to do with your being trans. These experiences can be so triggering that many people would try to avoid them.

And wouldn’t everyone love to have a doctor who really knows them, and on whom they can rely?

“There’s a value for all people in having a primary care physician, in having a medical home, and someone who’ll help you keep healthy, or help you get healthy if you are sick. A primary care physician can also help you navigate a health care system,” says Dr. Slongwhite.

Most primary care is the same for trans and cis patients. There is, though, some specific knowledge required for quality care of trans patients, including keeping up on standards of care. “Research is a work in progress. Part of my job is being knowledgeable for patients,” says Dr. Slongwhite.

She even helps with matters that most primary care doctors wouldn’t. “It can be part of my job to help you navigate for a name change and help you with insurance coverage. That’s part of my job, so you aren’t tilting at windmills by yourself.”

Some of Dr. Slongwhite’s patients are referrals, but she is seeing an increasing number of new patients for whom she is their first stop. “Initially, in some cases, they just want to talk to me about their transition and where they want to go.” She says they are looking for someone who can help them navigate their journey.

Improving Med School Curriculum

When Dr. Slongwhite was a student at the University of Maryland School of Medicine, she and some classmates took it upon themselves to write an LGBTQ curriculum, which they then taught faculty how to teach. “We trained the trainers. We’d never seen any depiction of any non-cisgender patient. At the very least, the concept of LGBTQ people should be introduced into the curriculum,” she says.

One day, she and classmates were practicing taking hospital patients’ histories. One student entered the room of a patient who, unknown to him, was a trans woman. He asked when the patient’s last menstrual period was, and when she said she’d never had one, he asked why. The patient answered that she’d been born a man. The student fled the room in embarrassment.

“He was so ashamed,” Dr. Slongwhite says of her classmate. “That was something that should have never happened to either of them.”

She notes, “I experienced that distress about when and how to come out to a care provider” – including explaining, after a doctor’s follow-up question about sexual activity, why she didn’t need birth control.

In 2014, the American Association of Medical Colleges published competency guidelines for use in curricula. Although most medical schools now have some LGBTQ training, it remains limited and students – many of them LGBTQ themselves – continue to clamor for more. A 2018 survey of New England medical school students found that 77% felt not competent at treating gender minorities, and more than 50% said their curriculum was inadequate.

For any doctor who seeks it out, guidelines on caring for transgender patients are available from many medical organizations, including the American Medical Association, American Psychological Association, and American Academy of Pediatrics.

Dr. Slongwhite foresees “a sea change” as incoming medical students are increasingly aware of LGBTQ people and their care needs.

“Ultimately, it’s the care we want for our ourselves, that we want for our loved ones,” she says.