Before he could get his surgery, Lindsay Peace would put her son Ace to bed at night and wonder if he would still be alive in the morning.
Ace was 16 years old when he came out as transgender. He told Lindsay top surgery to remove breast tissue was one of the medical procedures he needed to feel comfortable in his body.
When Lindsay and her son began exploring options through Alberta Health, they quickly hit a wall.
“There was no information, no phone number, no email, no waitlist, other than, maybe you’ll get it in four years,” Lindsay said. “It sounds dramatic, but he didn’t have four years. He couldn’t have done it.”
There are more transgender people living in Alberta than the national average, with at least 12,480 transgender or non-binary people having lived in the province, according to unprecedented data released from Statistics Canada in April. In Calgary, that includes about 5,000 people, or 0.39 per cent of the population.
However, advocates and health professionals say patients are struggling to access health care due to limited information, long waiting lists, travel and a lack of training. Thousands of people in Alberta are waiting anywhere from two to five years for surgeries, including breast augmentation or mastectomy, phalloplasty, metoidioplasty and vaginoplasty.
Lindsay said she knew her son’s mental health would deteriorate if they had to wait years. The family decided to forgo Alberta’s funded plan and paid $20,000 for top surgery in Ontario instead.
The difference she saw in her now-22-year-old son after the surgery was dramatic, she said.
“After the surgery, he’s leading the Pride parade without a shirt on. I have this picture of him carrying this banner, and he’s smiling. It was incredible,” she said. “Three years before that, we couldn’t get him out of his bedroom.”
All provinces and territories offer varying levels of care for transgender and non-binary people. Right now, Albertans are able to get top or bottom surgeries covered by the province through the Alberta gender surgery program with a referral from a physician or family doctor.
Patients must be diagnosed with gender dysphoria for coverage — for bottom surgery, patients are required to get two diagnoses from two physicians who have expertise in gender dysphoria. Advocates and medical professionals say few physicians, including only five psychiatrists in the province, are able to do this.
There are no medical facilities in Alberta that provide gender-affirming bottom surgeries, meaning patients are sent to a private hospital in Montreal instead. Though publicly funded, the gender surgery program does not cover personal expenses or medical supplies for recovery.
Dr. Joe Raiche, psychiatrist and clinical lead at the adult gender clinic at Foothills Medical Centre, said the clinic currently has a waiting list of two years for health-care referrals, with between 1,500 and 2,000 active patients at any time.
“That’s pretty abysmal for health care,” he said. “It just feels like there’s this never-ending supply of patients and an inability to catch up, even if we could hire five new physicians tomorrow.”
There is $2 million allocated for the gender surgery program for 2022-23 according to the province, but Raiche said that won’t be enough to alleviate delays. Instead, Raiche said medical professionals have advocated for a surgical centre in Alberta to deal with the bottleneck.
“We have the necessary clinicians, the surgical specialists, gynecologists, plastic surgeons, urologists … but the lacking piece has been the institutional buy-in from AHS or Alberta Health, so we’ve been stuck with this broken system,” he said.
“For a province the size of over four million people, there should be something here.”
In an emailed response to Postmedia, Alberta Health spokesperson Chris Bourdeau said bottom surgery requires “specific surgical expertise not available in Alberta or other provinces outside of the Montreal clinic, with the exception of B.C.”
“As with some other specialist procedures, provinces do send patients to other provinces to receive these procedures,” Bourdeau said.
Alberta Health did not respond to specific questions about whether the province will consider reviewing the current system, or how the province plans to make gender-affirming surgery more accessible to Albertans.
Trans and non-binary people in Canada were more likely to experience unmet general and mental health care needs during the first seven months of the COVID-19 pandemic, according to a report from Trans Pulse Canada.
For comparison, about four per cent of the general population and 45 per cent of trans and non-binary people reported an unmet health care need pre-pandemic, the report reads.
‘This is about our survival’
Kim Fuery, 52, said she was told it would take two years before she could see a psychiatrist at the gender clinic at Foothills Medical Centre for a referral. She estimates it would take another two years before the actual surgery.
“The treatment is available, and it’s covered but the waiting seems interminable. It’s like being able to see water but not drink it and the longer it goes on the worse it gets.”
Fuery said she knew she was a woman at the age of 15. She didn’t have the words to describe it at the time but knew her body did not match who she was.
“That realization was followed very quickly by me trying to end my own life. Being a queer kid in the suburbs in the mid-’80s, in southern Alberta, was not safe or healthy. In my head, I really did not see any kind of future or place for myself.”
Fuery kept her identity hidden for decades, policing herself to fit in with what society expected of her. She struggled with multiple addictions from early adolescence, but her alcoholism rose to dangerous levels during the pandemic, she said.
Near the end of 2020, she said to herself “anything but this.”
“I let myself unfold, to think what I thought, and feel what I felt, and do what I wanted to do.”
Now 16 months sober, Fuery still remembers the first piece of clothing she bought for herself — a bright magenta tank top.
Fuery emphasized not all gender and sexually diverse people need to access medical procedures to transition. However, she said she struggles with gender dysphoria and needs bottom surgery for her own journey.
“The physical dysphoria is a major mental health issue. I’m speaking in my own context, but having that mismatch between brain and body is punishing,” she said.
“No one who needs top or bottom surgery does this frivolously. We don’t do this because we’re bored. We do this because this is about our survival.”
Other surgeries, including breast augmentation and mastectomy, are also covered under the provincial program. These procedures can be done locally, but not every surgeon is willing to include transgender health care in their scope of practice.
Mag Benard, 30, is non-binary and on the two-year waiting list for top surgery consultation. They said there has been no word on their referral since it was sent to a surgeon in Calgary last June.
“I’m probably going to be waiting for over another year, minimum. A lot of folks who are in my space right now are often hoping that there’s a cancellation,” they said.
Benard said it’s frustrating to be forced to wait for relief from gender dysphoria. Having to bind their chest every day as a temporary fix is exhausting, they said.
“I feel like I can’t fully authentically express myself and be comfortable with myself,” they said. “When I look in the mirror, I don’t see myself. I have to cover up that part of me because it makes me physically ill to my stomach.
“Gender affirming surgery is life-saving surgery, because when you are stuck living in a prison where you feel so disconnected from your physical self, it takes a toll on your mental health and well-being. … Nobody wants to live every single day barely surviving.”
Bourdeau said in an email wait times for the province’s two gender clinics in Edmonton and Calgary vary from six to 24 months, “generally similar to, or shorter than, before the pandemic.”
“The wait list for a referral from an Alberta licensed physician depends on the physician’s appointment schedule,” the email reads, adding wait times for surgery depend on the surgeon’s availability at the time.
Along with long wait lists, traditional health-care spaces in the province are not seen as safe for transgender or gender-diverse people. When Benard had their appendix taken out this year, none of the doctors or nurses asked them for their pronouns or what name they wanted to use.
“There needs to be more opportunities for professional development so more professionals are trained and experienced to actually support and help people who are transgender.”
Benard, Fuery and Lindsay said it was extremely difficult to find information about transgender health care in the province.
“People shouldn’t have to be stumbling through and figuring out how to get the care that they need. It should be easily available to them in a process that is well-defined with credible sources, supported by Alberta Health and AHS,” said family physician Dr. James Makokis from the Saddle Lake Cree Nation.
He said the biggest change needed is for the province to have a co-ordinated network that aligns all practitioners in the province working in trans health care.
Physicians used to be able to list their practice on the College of Physicians and Surgeons of Alberta website, so patients could search for physicians with a trans health care background, he explained. He said the college removed that search function two years ago.
“My trans patients can never find a family doctor who does this. Usually, it’s by word of mouth, or researching on social media.”
Other provinces like B.C. or Ontario have a province-wide system navigator specifically for trans and gender-diverse people. For example, the Rainbow Health Ontario website has a service provider directory, education and training for health-care providers, and research.
“I think that we have the ability to have credible information where people and families don’t have to be navigating in the dark to access life-saving care.”
Training and education in transgender health care is not mandatory for physicians, but Makokis said he highly encourages other family doctors to open up their scope. There are “huge gaps” for trans health care physicians across the province, including Fort McMurray, Grande Prairie, Edmonton and Calgary, which can add on to wait-times for patients, he said.
“We need more family doctors doing that type of medicine. There’s nothing to be fearful of, and you will definitely change, and probably save, someone’s life by doing this medicine.”
A Trans PULSE Canada survey published in 2020 found one in three trans, two-spirit or non-binary people considered suicide in the last year. One in 20 respondents said they had attempted suicide.
Transgender health care varies by province
Gender-affirming health care is recognized as medically necessary and life-saving by international medical experts, with standards of care set out by the World Professional Association for Transgender Health.
While Alberta stalls on reviewing policy, other provinces and territories have made improvements to access and delivery of gender-affirming health care.
In 2021, the Yukon government expanded health-care insurance coverage to include a wider list of surgeries and other procedures, including voice training and facial feminization surgery. The territory now has the most comprehensive coverage in Canada for gender-diverse residents by aligning with WPATH standards.
Trans Care BC works with partners and stakeholders, including the Ministry of Health, transgender communities, individuals, non-profits, regional health authorities and the First Nations Health Authority for a provincial network of services.
In Ontario, the government-funded Rainbow Health program creates opportunities for the health-care system to better serve LGBTQ+ communities by training health-care providers, providing information and spurring research.
Lindsay is also the executive director of Skipping Stone in Calgary, a non-profit offering support for transgender and gender-diverse people. She said the non-profit has two support groups specifically for people waiting for top surgery.
“It is so frustrating to see other provinces are moving forward. They’re listening, and in many of those provinces, they’re working with community organizations,” she said.
“We’ve had a few conversations, and people just pass the buck. There’s a ton of that between Alberta Health and AHS. Nobody will take responsibility to do this.”