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Lost in Transition?

After decades of trans activism, last fall Ontario’s Minister of Health Eric Hoskins announced massive changes to the way that trans patients could access transition-related surgery referrals. Until Hoskins’s announcement, every trans person seeking surgery required a referral from the Centre for Addiction and Mental Health in Toronto, whose waiting list was many years long. But, Hoskins announced that, starting in March of this year, “transgender patients [can] access referrals for gender confirming surgery in their own communities from their existing circle of care.” Referrals are now determined by “qualified primary-care providers across the province,” meaning physicians or nurse practitioners who feel competent.

Hoskins also announced a $2 million investment in trans health care services, to focus on training health care providers, creating a post-operative recovery hub in Toronto and planning for a new surgical program. These sweeping regulatory changes unplug the huge referral bottleneck at CAMH and improve access to transition-related surgery referrals for trans patients in Ontario, whose health outcomes have historically been much worse than average.

“There are now endless additional referral points wherever physicians and nurse practitioners are willing to take on that work,” says Jordan Zaitzow, trans health connection coordinator for Rainbow Health Ontario, the provincially funded program tasked with educating and training medical health professionals to provide high-quality care to trans communities. A survey of providers in the region suggests, however, that many health professionals seem uncomfortable taking on trans patients.

Isaak Haig started his transition in 2013, when all referrals for surgery had to go through CAMH. When he was 18 years-old he told his family doctor that he felt uncomfortable with the gender he was assigned at birth, but was told by his doctor that it was “just a phase” and that he “just needed time.” At one point he says that his doctor suggested he read the Bible to “sort himself out.” After many years of using and abusing substances as “a way to cope,” in 2013 he connected with a counselor at CAMH. As a 32 year-old he received a diagnosis of gender dysphoria, which refers to the distress or discomfort caused by a discrepancy between a person’s birth-assigned sex and that person’s gender identity.

“I went to rehab as Chris, and came home as Isaak,” Haig says, explaining that his counselling at CAMH helped him to accept that the ways he’d been thinking about himself were normal and OK. Until he was connected with a counsellor at CAMH, Haig says he was “on the road” to suicide. “I wasn’t happy in my old body. That wasn’t me,” he says.

According to Trans PULSE, an ongoing community based research project, over half of trans people in Ontario “have levels of depressive symptoms consistent with clinical depression,” and close to half have “a history of attempting suicide.” One in five trans Ontarians has been physically or sexually assaulted for being trans. These numbers are higher still for trans people of colour.

When we spoke on the phone Haig was recovering from the “top” surgery – a general term that for female-to-male trans people can include bilateral mastectomy and male chest reconstruction, or for male-to-female people breast augmentation – that he received in March, more than two years after his diagnosis. According to 2015 research, about 75 per cent of trans people need to transition medically, with some combination of hormones and/or surgery. This summer Haig starts the process of receiving “bottom” surgery to complete his physical transition.

“The first thing I did when I got home [from rehab] was find a new doctor,” Haig says, though he is quick to point out that he is “one of the lucky ones.” In 2013 it seemed like “nobody in the area was taking on trans folks,” but his CAMH counsellor connected him with a doctor at Lang’s Community Health Centre, where he has received primary care since.

In the new regulatory regime, Haig’s doctor – or a nurse practitioner – at Lang’s could coordinate his referral(s) for surgery. However, many of the primary care providers, health care administrators and trans folk I spoke with pointed out that trans people still struggle to find a primary care provider who is comfortable supporting them through a gender transition or on other non-trans specific health issues.

In a 2016 academic survey of 433 trans adults, 356 of whom had a family physician, a team of researchers from Ontario concluded that within the sample population “discomfort in discussing trans health issues with a family physician was common, presenting a barrier to accessing primary care.”

Langs CHC in Cambridge and the ARCH Clinic in Guelph are two of the main clinics in this region with significant numbers of trans patients obtaining support for gender transition – about 15 and 140, respectively – but staff from both clinics are concerned about trans peoples’ access to care.

About one and a half years ago, ARCH – which stands for HIV/AIDS Resources and Community Health – conducted a needs assessment and determined that there might be about 50 trans people in their catchment area – Guelph-Wellington-Dufferin, Kitchener-Cambridge-Waterloo and Grey-Bruce Counties – who needed primary care, says Deanna Clatworthy, who is a registered practical nurse and ARCH’s clinic manager.

“But we’re already at 140 patients, and have turned people away from the Caribbean, Morocco and western Canada who found out about ARCH’s services and were willing to fly in,” says Clatworthy.

“I have to turn down two to three people every week, because they’re outside of our funded catchment area. If we could take them here our clinic would be ridiculously big.”

ARCH recently suspended accepting new patients until the fall, so that they can catch up with and better understand the recent changes to the referral system. Nancy DiPietro, Director of Clinical Services at Langs CHC, says they’ve also had to turn away many patients who couldn’t find a doctor in their own community.

Allisa Scott says that medical professionals are often “uncomfortable or worried” about their ability to support trans patients, whose problems appear “complex,” which they said has more to do with doctor’s lack of training than trans patients health needs.

Scott uses the gender neutral pronoun singular they and identifies under the trans umbrella as non-binary and genderqueer. These identities recognize that gender, like sexuality is a spectrum. Scott is also a social worker with close to 20 years of experience working in and with LGBTQ+ communities across Ontario. About 80 per cent of their clients are transgender.

“More than once I’ve been contacted by an agency [for consultation, support or training] because they don’t know where to start with supporting transgender patients and they want to ensure that they are offering them proper care. They can also be terrified to offend,” says Scott.

Clatworthy similarly argues that many providers are unnecessarily concerned about treating trans patients. There are internationally recognized treatment guidelines, she says, and “it’s a simple, straightforward approach available to all doctors.”

Erica Roebbelen is a recent graduate of McMaster’s Michael DeGroote School of Medicine (and my close friend). She did the bulk of her training in Hamilton, where she now works as a family doctor, and says that “one three-hour session of our ‘Professional Competencies’ curriculum [was] dedicated to trans health issues.” A trans physician from the community gives this lesson to each class of students, she says, and “it is really informative and always very well received by the learners.”

“I don’t think our medical school training would be enough to equip students to really support the health needs of the trans community, but then again there are many special populations that our training doesn’t address very thoroughly,” she adds, explaining that students are given a broad training and then, given their interests and the kind of populations they’ve already interacted with, choose specific elective opportunities.

“Providing comprehensive care to trans patients requires time, knowledge and skill about their important health issues. Understanding their needs requires on-going learning for many providers who did not receive this education during their formal training in medical school,” DiPietro adds.

Rainbow Health, the coordinating training body, is doing its best to meet growing demands for training.

“At this point, I can’t keep up with the requests for training and education. It’s an invigorating and busy time to be doing this work,” says Zaitzow. “At the same time, I do think there is still this block to offering trans care for health care providers generally… our bottom line has always been that trans care is not specialized care.”

“A lot of the training and education is really around de-stigmatizing trans bodies and working through transphobia,” he adds.

A number of the providers I spoke with acknowledged that doctors are not and cannot be experts about every population that might walk into their practice. While doctors are expected to do a great deal, including staying up to date on all relevant medical developments, when they choose to pursue extra-curricular trainings they are likely to focus on conditions like hypertension or colon cancer that affect a great proportion of their patients. In general, talking with patients, getting to know them as whole people with complicated histories, is not lucrative (and might feel like inefficient) medicine. Doctors must also balance obligations to individual patients and to a public health care system that requires them to do their fair share.

In short, many questions remain about how medical professionals should be trained to better support trans patients – or any minority population. While those debates continue, many local organizations are working to fill service gaps.

Lang’s runs a program called “gender journeys,” which provides support and information to trans folks locally. According to DiPietro, many participants arrive having never met other trans people in real life, and one participant recently described the group as “lifesaving.” SPECTRUM, “Waterloo region’s rainbow community space,” regularly hosts trans peer support groups and KW Counselling Services runs the OK2BEME program, which provides free supportive services for LGBTQ+ identified children, teens and their families.

Pretty much everyone I spoke with pointed me towards the detailed, comprehensive and heartbreaking research about transphobia in Ontario and beyond, including about suicide and unemployment and social isolation and our confused notions about binary gender identities. For trans folks, more than one person reminded me, these are issues of “life and death.”

But then pretty much everyone I spoke with also reminded me – sometimes in the same breath – that these are deeply resilient communities and individuals who together or alone have shouldered the burden of educating their care providers and their friends and their teachers and their neighbours.

“You do not come out only once, you come out over and over again,” says Scott.

The recent regulatory changes to transition-related surgery referrals are the result of decades of committed trans activism, including the kind of community organizing Issak Haig is doing in Waterloo. Good Laughs is the monthly get-together that he convenes in Waterloo, “a safe space for trans people to explore their identity however they choose.”

“It’s a very lonely journey for some of us, and bonding and companionship and being around people who know what you’re going through is so important,” he says. “It’s a great community that I’m proud to be a part of,” he adds.

“People around me say they really like this new me.”

Jesse is editor in chief of the Community Edition.