Trans teens and youth say gender-affirming care is 'life-changing.' So why is it so hard to find in Canada?

Crow Heyden-Kaye was in Grade 8 when a worksheet handed out during class asked students to consider how they would describe their gender.

It was the first time it occurred to Crowthat "girl" didn't actually fit with how he felt. Over the next few years, he began using the pronouns they and them. In Grade 10, he came out as trans.His pronouns are "he" and "they."

"Immediately, it was like something clicked," said Heyden-Kaye, who is now 18 and lives with his parents and sibling in Ponoka, a central Alberta town of about 7,300 people.

At 16, he asked his mom to make an appointment with their longtime family doctor so he could get a referral to a gender clinic. He wanted to start exploring the possibility of hormone replacement therapy.

But during the telephone appointment, the family doctor began asking questions Heyden-Kaye felt were inappropriate.

"What if I wanted to get pregnant someday? What if I had a husband someday? Not related at all," hesaid. "I think he asked me 'What if you want to keep your boobs?' "

A week later, a staff member from the doctor's office called back and said the physician was also recommending that Heyden-Kaye read a book that discouraged transitioning.

"A referral was all that we wanted and then it would be out of his hands. He refused to do that for us."

Demand for gender-affirming care which can range from mental-health counselling to hormone replacement therapy or even just learning what treatments are available is becoming more common across the country. But experts and advocates say a lack of local access to such care and the country's current political landscape around the topic puts trans and non-binary youth at risk of mental health challenges, including suicide.

'A massive problem'

The need for improved access to gender-affirming health care for trans or non-binary teens has become even more pressing given the political climate of the country, said Helen Kennedy, the executive director of Egale Canada, a LGBTQ research and advocacy group.

She points to provincial governments instituting policies related to students changing their names and pronouns at school without parental consent as one example of that.

Kennedy said research has shown that trans and non-binary youth are at a much higher risk of suicide than their peers, and that having support from family and community can significantly improve health outcomes.

"It's a massive problem in in Canada, and it's one that I think the governments at every level need to take more seriously," Kennedy said.

In June, the Canadian Paediatric Society published a position statement endorsing affirming care and offered practitioners across the country advice for how to provide it.

"Affirming care is sort of a bigger term, but it really means meeting the kid where they are," said Dr. Daniel Metzger, a Vancouver pediatric endocrinologist and one of the co-authors of the society's statement.

He said a growing number of pediatricians and nurse practitioners are aware of the long waits to see specialists, and are keen to help.

What is gender-affirming care?

Gender-affirming care is anything that supports an individual in living their gender identity, and generally comes in three forms:

• Social and psychological care, such as assistance with coming out to family, changing one's name or even changing appearances through clothing and haircuts.
• Medical care through steps such as puberty blockers and gender affirming hormones.
• Surgical care, which can include steps like top and bottom surgery.

Metzger said gender-affirming care often starts with finding out how the patient identifies, what parts of their body they are happy or unhappy with, and how things are going at home and at school.

If young patients are interested in a medical plan, a doctor can help with that letting them know what treatment is and isn't available and why.

Metzger says the World Professional Association for Transgender Health (WPATH) standards of care are followed by practitioners in Canada and around the world when it comes to best practices for gender-affirming care.

The guidelines recommend that before puberty blockers or hormone therapy can be considered, all youth be assessed by a qualified health-care professional who has studied psycho-neurodevelopment in adolescence.

According to the WPATH standards of care, medical gender-affirming care isn't recommended before puberty. They also state that parents should be involved in decisions to move ahead with treatments, except in rare cases, like if youth are in foster care or protective services.

While some trans youth are prescribed blockers or affirming hormones like estrogen or testosterone after an assessment, affirming surgeries aren't commonly performed on adolescent populations in Canada.

Funding and age cut-offs vary by province and territory, and bottom, or lower-body surgery, is restricted to adults.

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Long road to treatment

Unable to find gender-affirming care closer to home, many of Dr. James Makokis's patients travel long distances from across Alberta and even other provinces to attend appointments at his Edmonton clinic.

"In Edmonton, when I first started doing this about seven years ago, there [were] probably less than three physicians, family doctors, that were doing this," he said.

"And it really created a barrier for patients to be able to access care."

On a busy July day, a 15-year-old trans girl and her mother arrived to see Makokis, making the two-and-a-half hour trip from their small community in northeast Alberta. Their previous family doctor moved away, and none of the other physicians were taking new patients.

CBC has agreed not to identify the girl at her parents' request because of the small size of their rural community.

The girl had been referred to a different gender clinic, but her mother said there was a wait of about a year. A psychologist suggested Makokis, and they were able to get an appointment with him after just a month and a half.

The soft-spoken girl said Makokis was nice and that she was glad she got to see him.

"It's exciting that I can begin taking steps to be myself," she said.

Fear of the unknown

As a family physician, Makokis is able to both diagnose a patient with gender dysphoria distress caused by identifying with a gender that doesn't align with the sex assigned at birth and prescribe hormone therapy. He tries to see new patients within three months, but that's not always possible.

Once a patient has begun hormone therapy, Makokis tries to get family doctors to take over renewing prescriptions, but they sometimes decline to do so.

Hesays doctors often prescribe hormones to youth for other reasons such as using hormone blockers to slow down early puberty, orbirth control aseither a contraceptive or to ease menstrual cramps or acne butwhen it comes to treating gender diverse patients, Makokis says there's a barrier.

"It's really fear and lack of knowledge, fear of the unknown, fear of not being taught, fear of doing something wrong."

Though Makokis believes any family doctor can offer gender-affirming care, hesays there's a real gap when it comes to training. That's why he started inviting other physicians to shadow him at his clinic for several days of informal training.

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Recently, Edmonton emergency room physician Dr. Jaspreet Khangura spent the day with Makokis, watching and listening as he saw patients like the 15-year-old from northeast Alberta.

Khangura said she wanted to learn from Makokis because she knows trips to the ER can be a scary experience for gender diverse people who may delay emergency care because they fear they'll face discrimination.

"So it's really important that we, as emergency departments and acute care physicians, better understand their needs and how to address some of those fears," she said.

Mental health supports

Normalization of virtual appointments during the COVID-19 pandemic has helped make it easier for Fredericton clinical psychologist Amy Otteson to see transgender clientsacross NewBrunswick.

Otteson, who has worked with transgender patients for 13 years, says a big part of her practiceis providing support, aplace for trans adults and youth to talk through the process of coming out, andreferrals so they can access gender-affirming medical care.

But she says it's not easy to find practitioners trained to offer that kind of care in New Brunswick, and it's particularly difficult for people living in rural areas or Francophones living in the northern part of the province.

She says when patients can't easily access care in the language of their choice, it can lead to an increased sense of hopelessness and discouragement. "It can lead to giving up."

Otteson agrees that training family doctors and nurse practitioners would help, but she'd also like to see a centralized referral system at the provincial level to assist trans patients with navigating the health-care system.

'Life-changing' care

After his family doctor refused to provide a referral, Crow Heyden-Kaye feels like he got lucky. A pediatrician he saw for an unrelated health issue diagnosed him with gender dysphoria and referred him to a gender clinic.

More than a year and a half after his appointment with his family doctor and shortly before his 18th birthday, he started taking testosterone.

"It's like literally been life-changing. It feels so much better even with all the weird second-puberty stuff and the mood swings," said Crow, who is now an adult and has a new family doctor in Ponoka.

He hopes to move to Calgary for art school in 2024, but plans to make the 200-kilometre drive homefor appointments, rather than trying to find a new doctor who will provide gender-affirming care.

Crow's mother, Tanya Heyden-Kaye, was by his side and involved in every step of the process one she wishes had been easier and faster.

"This is him getting to be himself," she said. "He's happier."

Because the process Crow went through was so long and difficult, his mom gets frustrated when she hears what she believes are unfounded comments about gender-affirming health care or hormone therapy being offered to kids and teens too quickly.

She says gender-affirming care has made a tremendous difference to Crow's quality of life.

"I don't want to lose my kid; I don't want my kid to feel like they can't live in this world because they can't be who they are," she said. "I love them, honestly, no matter what."