Transforming Transition-Related Surgeries in NL

HCS documents obtained through ATIPP show that cost savings trumped access to surgery and treatment for trans patients in NL.

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In 2019, Newfoundland and Labrador’s trans community eagerly welcomed a new provincial policy covering Transition-Related Surgeries (TRS). 

Two years later, gaps in the policy have become starkly apparent. Trans and gender diverse residents continue to face immense barriers accessing medically necessary surgeries and supports. 

“Transition-related surgeries change sex characteristics to affirm a person’s gender identity,” explains MCP’s policy. TRS surgeries are provided across Canada, with variations from province to province. NL’s policy seems fairly straightforward, listing a range of surgeries encompassing breast/chest surgery (colloquially known as ‘top surgery’), genital surgery, and genital reconstruction (‘bottom surgery’).

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But when Charlie Dunphy, a 31-year old non-binary trans graphic designer in St. John’s, began looking into accessing top surgery, he discovered things weren’t so straightforward. He’d already been taking testosterone in order to present as more masculine, and was ready to proceed with a mastectomy. 

When he asked his doctor about it he got a shock.

“I didn’t realize how much more it was going to cost until I got my bill for it,” he said. “When I saw it I was like, ‘Okay—we’re going to need help with this.’”

While the actual removal of breast tissue is covered by MCP, the liposuction and implants which are necessary for many patients must be paid for by the patient. The surgery itself is not available in this province, so patients must front the costs of travel and accommodations to go out of province for the procedure.

The province has a Medical Transportation Assistance Program (MTAP) to aid residents who must go out of province for medically necessary procedures that aren’t available here. But MTAP is a cost-share program, which reimburses less than half the expenses faced by a patient like Dunphy—and that’s if he manages to meet all the criteria. 

The actual out-of-pocket cost for patients seeking this form of masculinizing top surgery can easily run to $4000. 

Even though MCP recognizes it as a medically necessary surgery, Dunphy received an invoice for $3277.50. His doctor told him a lot of patients fundraise to pay for it, so that’s what he did. An online GoFundMe fundraiser in January 2021 raised the necessary funds. 

“It’s definitely something that absolutely needs to change,” he said. “If I were someone who didn’t receive so much support from my community and my friends and family, it definitely wouldn’t be [possible]. People having top surgery shouldn’t have to pay four extra grand on top of the surgery. What is being covered if you have to pay for all these other things?”

According to documents obtained by The Independent through an Access to Information request, when the policy was revised in 2019 the Department of Health and Community Services (HCS) hoped that surgeons would begin offering the procedure locally, cutting down on travel costs. However, that hasn’t happened. When patients apply for the surgery, they go on a waiting list and it can be months or years before their surgery is scheduled. During that time, many are raising funds to cover it. If they get offered a surgery date before they’ve raised the money to pay for it, they have to pass on the offer and go back on the waiting list. 

“It’s definitely stressful,” said Dunphy. Stressful as it is to navigate the process, not doing so would be worse.

“Once you’ve accepted that you’re trans, it’s like the dysphoria and all those other things just become so much bigger,” said Dunphy. “I’ve always had chest dysphoria, and it’s always been a problem for me, but… once I came out, the chest dysphoria at that point just kind of took over. Before that point I had never worn a binder or anything like that, but now it’s like I need this to happen as soon as possible because it’s all-consuming, it’s the only thing you think about, it’s the only thing you talk about.”

The situation facing trans women seeking top surgery—breast augmentation—is even worse, financially speaking. Although that surgery is offered within the province, coverage is even more restrictive, and costs are higher: $8000-$10,000, depending on the patient.

“We are missing a part of our body”

Melissandra Groza came to St. John’s in December 2018 as an international student. Originally from Bangladesh, she began studying Computer Science at Memorial University. She came out as trans in September 2019. Her family, who funded her studies, found out and responded with hostility, cutting off her funding. Unable to pay tuition fees, she had to abandon her studies. Knowing that her life would be in danger as a trans woman if she returned to Bangladesh, Groza applied for asylum. 

Like many trans folk, Groza knew she was trans from a young age. Her parents were busy professionals and she would often wear women’s clothing while alone at home. At first her parents considered it a childish joke, but as she grew older they became less tolerant. One day her father came home unexpectedly and caught her wearing her mother’s clothing.

“He was furious. The first thing he did was start slapping me. And then he started yelling: ‘How many times do I have to tell you that you’re a boy not a girl?’ I was scared.”

Her parents sent her to an all-boys boarding school in an effort to forcibly impose a male identity. “It was like a prison,” she recalled. The school was surrounded by locked gates and barbed-wire fences. The boys slept eight to a room, and the rooms did not have any doors. 

“[Teachers] would rush in every morning and start beating us with canes. Those canes were very thick, and they were wrapped with tape. They would rush in, beat us in our sleep to wake us up.”

Questions that teachers deemed inappropriate were also responded to with beatings and canings. Students were forced to watch other students being beaten. Groza was ten years old.

“They thought that living with all these random boys from different parts of the country would ‘fix’ me. It was traumatic, what happened there. I still get nightmares. It was nothing less than a prison. It was the last place you want to be on earth.”

She lost a great deal of weight, and when her parents came to get her for the holidays, she warned them: “Please don’t keep me there any more, or you’re not going to find me next time.” 

Her grandfather intervened and urged her parents to pull her out of the boarding school, which they eventually did. The scars from beatings she endured at the school lasted for months.

It was a few years later, as a teenager, that she gathered enough information to realize she was trans. But she knew it was something she couldn’t safely share.

“Imagine you, a closeted queer person—how old? Fifteen? Sixteen? You wake up to the news of someone, your fellow queer comrade, brutally murdered. And the killers? They’re walking free. Everybody knows who the killer is. They’re just walking free. And if you try to contact the police, if you seek safety, then they’re going to tell you to be less provocative. Even if you’re just trying to live your own life.”

Even when she arrived in Canada the fear lingered. It took her almost a year to work up the courage to come out.

“It took me months to gain that confidence. It took me months. I was scared. I was scared to go out in a dress. I was scared to use she/her pronouns, when I moved here. It took me months to get over the trauma that I faced.”

Although Groza knew she was trans from a young age, she didn’t realize the extent to which it affected her daily life until she came out.

“My gender dysphoria was horrible,” she recalled. “I was on anti-depressants. I had no idea what was going on.” 

Groza experienced severe depression and engaged in self-harm. In 2019 she accessed the Student Health Clinic at Memorial, came out as trans and began hormone therapy: estrogen hormones and testosterone blockers.

“I opened up about myself finally, after all these years,” she said. “Everything was going pretty smooth. I was on hormones, I was happy that finally I was myself… I started putting more emphasis on my gender issues because I knew that the majority of what I was facing health-wise back then, it was all because of my gender.”

Coming out enabled Groza to finally be herself openly, but this has brought its own difficulties. She often receives death threats from back home, she says—even from family members. 

Like others, Groza yearns for the gender confirmation surgery that’s so essential to tackling dysphoria. But because top surgery for trans women is for all practical purposes not covered under provincial health care, she doesn’t know when she’ll be able to pursue it.

As an asylum-seeker, she is at present not permitted to seek employment, so the option of saving money for surgery is not even legally open to her. Following the example of others, she started a GoFundMe page in December 2020. But public crowd-funding campaigns require extensive social networks and friends or colleagues with money to spare. To date, she’s raised only $500 of the $10,000 she needs.

“Top surgery is as important to tackle gender dysphoria,” she said. “In my case I suffer from heavy depression because of this… They often say that facial feminization and facial hair removal and top surgery, breast enlargement—they say they’re cosmetic things and ‘We don’t cover cosmetic things.’ Well in our case it’s different. It’s not just a cosmetic thing. It’s a part of our identity. We are literally missing an organ, we are literally missing a part of our body. We’re missing something. And we face mental health problems… because those surgeries are so expensive and not everyone has the opportunity or the means to get them done.”

“It’s lip service”

When Dane Woodland started looking into top surgery for breast removal and chest masculinization six years ago, things were even worse. At the time, before even getting on a wait list for surgery trans people had to go to Toronto to undergo an assessment by the Centre for Addictions and Mental Health (CAMH) in order to be diagnosed as trans. Woodland got on the waiting list but was told it could be over five years before he got an appointment to be assessed. If approved, then he would go on another waiting list for the actual surgery. He also learned that MCP didn’t cover the entirety of the procedure. 

Faced with the prospect of a years-long wait in order to be approved for a surgery that was only partially funded by MCP, Woodland decided to forego the MCP route entirely and pay out of pocket for a private surgical clinic to do the procedure. This would enable him to get the surgery faster, but the cost of the surgery was about $8000, in addition to flights and accommodations. He started working two jobs (one full-time, one part-time), and organized fundraisers at local bars. He launched a GoFundMe campaign. He worked through every holiday. He stopped going home to visit family in Corner Brook, opting to stay in St. John’s instead working around the clock to earn money for his surgery. It was exhausting. In the end, his mother agreed to co-sign a loan to cover the outstanding balance (he only paid it off last year).

“[It] was physically fatiguing to be working a job and a half, two jobs; it was emotionally exhausting to be constantly visible, to be living with that dysphoria every day… I was on full blast, trying to get the opportunity to have this procedure,” he recalled.

It was psychologically exhausting in other ways. The fundraising campaign required Woodland to repeatedly share deeply personal struggles with the public: in the media, at downtown bar events, on a public webpage.

“[It] really put me in a position where I had to be very vulnerable. I had to display the trauma that I was experiencing… people are not aware. They don’t know that those hurdles exist, and as soon as they find out how difficult it is, you get folks who consider themselves allies remarking on the inhumanity of it. So there is a dehumanization that happens there.”

While recovering from the surgery, Woodland filed a human rights complaint over the lack of coverage which had forced him to pursue the private surgical route. After months of correspondence, he was told the province would review the policy. 

Other trans people were filing human rights complaints as well. Woodland speculates this may have had something to do with the revision of MCP’s TRS policy in 2019. The new policy did make some significant and critical improvements.

For one thing, the requirement of an assessment by CAMH in Toronto was removed, and MCP agreed to accept assessments from local medical practitioners in order to approve TRS surgery (two assessments from a small pool of approved professionals are required). This significantly streamlined up the process (the wait is now closer to two years, rather than seven or more). As well, phalloplasty—a sought-after procedure for trans masculine people—was added.

However, significant gaps remain. Parts of these procedures are still not covered. And breast augmentation for trans women is approved only under conditions that are so strict, some medical practitioners say they don’t actually exist.

Essentially unavailable in NL

When breast augmentation was added to the list of MCP-funded TRS surgeries, the province adopted some of the most restrictive eligibility criteria in the country. To be approved for funding in NL, trans women must have what’s called ‘breast aplasia’—zero breast development—after 18 months on feminizing hormones.

Dr. Mari-Lynne Sinnott is a St. John’s-based physician who specializes in trans health care, and probably sees more trans patients than any other doctor in the province. To date, she has not had one person qualify under the new criteria.

“I haven’t had a single person who’s been on feminizing hormones who hasn’t gotten even a small amount of development, then that automatically disqualifies them from accessing it,” she explained. “I haven’t had anybody who’s met the criteria here for referrals. I don’t know if anybody has.”

“There are lots of trans women and trans feminine people who haven’t gotten the degree of breast development they need for alleviation of their gender dysphoria. Those women and people would love to have surgery done and some of them are really struggling with the extent of their gender dysphoria because of the poor [breast] development. But because there is some development they don’t meet the threshold.”

Sinnott is quick to point out that people seeking TRS face barriers in other provinces too, and there are serious gaps in trans health care in most jurisdictions. 

“But the language around the policy here is probably the most restrictive,” she said. She doesn’t understand why the province requires 18 months on hormones before assessment, since the medical standard is 12 months. Several other provinces including Ontario, British Columbia and Nova Scotia use a model based on the Tanner scale of breast development, allowing surgery for those who don’t reach a certain point on the scale. 

“It gives you a little bit more leeway to say the breast development is sub-par, underdeveloped versus undeveloped. That makes a world of difference for how we can connect people to the service. It gives you a little bit of discretion as the assessor to say: ‘Look, they’ve done everything and they’ve been through this process and yes there’s been a significant improvement in gender dysphoria in many ways but this is still really ongoing, they’re still really suffering, and this is going to make a meaningful difference to their quality of life and their mental health.’

“When they’re not getting adequate development on HRT and through medical management, surgery is the next option. And it’s essentially unavailable for all intents and purposes in Newfoundland [and Labrador].”

Cost a factor

A series of Access to Information requests filed by The Independent shed some light on the policy revisions that took place in 2019. The province’s existing policy of requiring a CAMH assessment prior to approval for surgery had become untenable: although CAMH said its waiting time for an assessment was two years, actual waiting time was reported as seven years, and new requests were being rejected because the waiting lists were so long.

Dr. Sinnott, together with the Chief of Family Medicine in Western Health, warned the situation had reached an alarming state of crisis and recommended the province develop an in-province assessment process to avoid having to send people to Toronto. Eastern Health, which had its own trans health committee, agreed with this recommendation.

Consultations with local health practitioners suggested there were about 200 people being treated for gender dysphoria in the province, with 60-65 people ready for gender-confirming surgery. It was noted that some patients don’t seek treatment because of the costs. HCS predicted a “substantial” increase in patients seeking treatment for gender dysphoria “if and when the barriers to treatment have been eliminated.” Those barriers, says the departmental direction note from 2019, include “the out-of-pocket costs of treatment.”

Discussion on the issue spanned about four years. HCS’ own analysis concluded its existing policies were “outdated” and “inconsistent with other jurisdictions.” A variety of coverage scenarios were proposed and analyzed, and a revised coverage policy developed. The HCS analysis observed that Ontario’s policy, for one, provided greater coverage for breast augmentation than NL’s. Adopting the controversial standard of ‘breast aplasia’, notes a departmental direction note, would “limit the number of TRS patients eligible for this surgery.”

Cost savings, it seems, trumped access and treatment, leaving this province’s trans patients in a worse position than those in other jurisdictions.

NL policy “the worst”

Susanne Litke, Q.C., is a lawyer who supported a human rights case in Nova Scotia that paved the way for trans women to access top surgery in that province. In 2014, Litke—then a lawyer at the Dalhousie Legal Aid Clinic—started a Trans Rights Project there. The project has achieved numerous wins, including the province’s policy on gender marker changes. In 2018 it took on the case of a Nova Scotian trans woman seeking breast augmentation surgery.

Prior to that point, mastectomy was covered for trans patients under MSI (the Nova Scotian equivalent of MCP), but breast augmentation was not. Litke represented her client in a complaint to the NS Human Rights Commission. They argued the existing policy was discriminatory.

“Mastectomy was covered under MSI for males who were assigned female at birth who needed to have their breasts removed, but no public funds [were provided] for breast augmentation. It was a sexist distinction between men and women. Men had no problem with [getting] a mastectomy, and women just didn’t qualify [for coverage of the surgery] at all.”

As a result of the case, the NS government agreed to provide limited coverage for breast augmentation surgery. NS adopted a model based on the Tanner scale, which is used to measure breast development in young girls, among other things. Publicly funded surgery is only provided for trans women who, after two years on estrogen hormone treatment, have not reached Stage 2 (essentially a pre-pubescent breast bud). Those who have reached that stage are ineligible for support.

Litke argues this model is inadequate, and remains sexist. She points out that the determination for coverage doesn’t measure trans men’s breast tissue to determine if they deserve a publicly funded mastectomy, so they shouldn’t be measuring women’s breasts either.

“[The NS government] is measuring trans women’s breast development after being on hormone therapy for two years, but they’re not measuring men’s,” she said. “If [men] have small tiny breasts, why do they get their surgery paid for, and a trans woman with a little bit larger breasts, but still breasts that still don’t fit their body so that they present as woman in the sense that they need to, why are we measuring their breasts? Why are we measuring women’s breasts at all? To me it’s wrong-headed.”

“I think there’s a strong argument to say we do not need a Tanner test at all. Your doctor needs to say you’ve got a diagnosis of gender dysphoria and it’s medically necessary for you to have breast augmentation surgery to relieve your gender dysphoria. That [should be] the test, and that [should be] the only test. There should be no measuring of anybody’s breasts. Why are they doing that? Why are they doing that to women and not to men?”

Litke was prepared to fight on at the human rights tribunal, but because her client was covered under the amended policy, there were no grounds to continue that complaint.

She’s hopeful a test case will present itself for them to carry on the fight for more accessible top surgery in that province. In the meantime, the Trans Rights Project at the Dalhousie Legal Aid Clinic in collaboration with the Nova Scotia Rainbow Action Project are working to improve health care access for trans and gender diverse patients along multiple fronts. They’re advocating for changes to include coverage for hair removal for trans women, as well as tracheal shave, and they’ve filed a human rights complaint over lack of access to voice pitch surgery (none of these procedures are yet covered in NL). Earlier this year, they won a ground-breaking case enabling non-binary people to access breast reduction surgery.

Litke is critical of the Tanner scale model, but she says that NL’s policy of using ‘breast aplasia’ is “the worst” policy a province could have, short of no funding at all.

“More than just cosmetic”

The World Professional Association on Transgender Health (WPATH) is the international non-profit association of medical professionals which has developed the standards of care followed by medical practitioners and insurers in many countries around the world, including Canada and the US. Its position statement on the medical necessity of surgical interventions is blunt: 

The medical procedures attendant to gender affirming/confirming surgeries are not “cosmetic” or “elective” or “for the mere convenience of the patient.” These reconstructive procedures are not optional in any meaningful sense, but are understood to be medically necessary for the treatment of the diagnosed condition. In some cases, such surgery is the only effective treatment for the condition, and for some people genital surgery is essential and life-saving.

The urgency of access was reflected in HCS’ own analysis, which cited sobering statistics from the Canadian Psychiatric Association: “77 per cent of transgender individuals seriously considered suicide, and 43 per cent attempted suicide. Timely access to medical transition intervention, when indicated, can prevent suicide and suicide attempts and avoid health systems costs for emergency department visits, inpatient days and rehabilitation costs due to injuries from suicide attempts.”

“This is more than just cosmetic,” said Dr. Sinnott. While hormones can be incredibly effective when started at a young age, they are less effective on trans women who start them later in life. When trans people’s bodies don’t reflect their gender identity, it often opens them up to harassment, discrimination and violence along with other mental health issues. 

‘People just want to be who they are and not have to explain it to people,” said Sinnott. “Because of how we as a society have placed expectations on how we express our femininity and our masculinity and our gender, breasts are this signal and sign of femininity that we look for. And when we see people, and they have breasts or they don’t have breasts, then we think we know [how] to gender them. The reality is we should not make any assumptions about people, but for people who are trying to exist in the world safely and securely and quietly and just be themselves, it’s a huge piece of their transition.”

Woodland described the impact his surgery had on him.

“It is life-changing, it certainly was for me. Nothing in my head about what I had hoped for came close to what the life experience actually was. To be able to get up and just haul a shirt on and go out the door, versus you’re having this conversation with yourself in the mirror where you are battling with the need to be safe, and also trying not to hate yourself because what you see is not what you want to see… it was truly exhausting. Your life depends on what you wear. And that is a huge barrier. That would be a barrier for me going to work, for being social, for going to school.”

“If it’s interfering with your executive function and your day to day life, that is a crisis. So there are people living in crisis. There are people who are living in trauma every single day.”

Physician, educate thyself

Trans Support NL (TSNL) was formed in 2017 to support the province’s trans community. It’s a prodigious task: the organization facilitates eight peer support groups across the island, including parent groups, adult groups, a youth group, a gender creative kids group, and they collaborate with First Light to offer a Two Spirit group. For the past four years they’ve also put off Camp Rainbow, a summer camp for Two-Spirit, trans and gender diverse children and youth. They operate without government funding.

Last year the organization launched a Gender Gear program, procuring and distributing binders for residents across the province who cannot afford them. There’s been huge demand for the service and they hope soon to expand it to include trans femme gear as well. The organization also offers workshops and training for local companies and organizations. 

 In early 2021 TSNL conducted a trans needs survey for residents of the province. The results were telling.

More than 1/3 of respondents said that their experiences of health care had been poor or harmful. … Many described having to engage in a great deal of self-advocacy and education of their health care providers. Incorrect pronoun use was a frequent concern. The financial cost of hormones and especially surgery was described as a considerable barrier. It was also noted that many family doctors are hesitant to provide gender-affirming care.

A handful of doctors were cited as offering excellent care for trans people, but as TSNL board member Logan St. Croix explained, whether or not a trans person is able to access a knowledgeable medical professional can be hit or miss.

Family physicians often panic when a patient comes out to them as trans, he says, and they try to refer them to a more knowledgeable physician. This can be problematic because often the patient has other health care needs unrelated to their trans identity, with which their existing physician will be familiar. To have to find and begin a new physician-client relationship can add to the difficulties the patient is experiencing, and can have negative impacts on other areas of their health. He said it’s a simple matter for physicians to educate themselves on the WPATH standards of care and Hormone Replacement Therapy (HRT), and he feels more encouragement and support needs to come from medical associations to help doctors acquire that training. 

“There seems to be a reluctance or hesitancy by family physicians to get that education. We’re hearing of doctors feeling really incapable themselves in terms of how to navigate it, because they don’t feel that they’re educated enough to take it on. Any family physician can go and look at the guidelines and bring themselves up to date on the current practices, it’s just a matter of do they do that? And do they even know that they can do that?”

St. Croix said TSNL has received reports of youth in the province trying to come out as trans or questioning their gender and being diagnosed with Borderline Personality Disorder (BPD) instead. A failure by professionals in the education or health care system to respect young people’s self-identified names and gender can exacerbate other behavioural or mental health issues, he explained, setting the young person up for a cycle of negative institutional encounters. Things appear to be gradually improving as more providers receive proper training, he says, but change has been slow.

St. Croix says it’s clear the current MCP policy on TRS is not accessible. 

“We do hear very often that the financial piece is a big barrier,” he said. “If you have something that is inaccessible to the majority of people that need it, it’s an ineffective policy. It’s… lip service. If you have something there but it’s not accessible to the people who need it, it’s not really there.”

In his case, he paid for top surgery before the new policy came in, at a cost of roughly $10,000.

“I was very fortunate in that I had family to help me. They were very willing. My mental health was really suffering and I was in a position where I felt uncomfortable leaving my house. I was very fortunate to have family members who were able to contribute and help me out, which I know is not always the case. Having supportive family to help support someone through this time is not the norm for many trans folks. 

“We shouldn’t have a health care system set up where you need to have other outside supports to help you through that… it’s a health care issue and it should be treated as such.” 

What needs to change? 

Medical and legal professionals like Sinnott and Litke are clear: eligibility criteria need to be broadened to make TRS more accessible. In December 2020, NDP MHA Jim Dinn presented a petition to the House of Assembly calling for revisions to the policy as well. 

“I can understand some hesitancy or confusion around what’s the best way to do this in a fiscally responsible way in a publicly funded system, because there’s only so much that we can expect the publicly funded system to sustain,” said Sinnott. “But we have to temper that with what is medically necessary and what is going to help this population, and I think that we’re not there with what the policy is right now… I don’t know what the line is, all I know is that we’re not there.”

St. Croix emphasized that professionals require more training. He said the lack of consistent, enforceable trans-affirming policies are also a problem. In the health care system, for instance, some medical practitioners respect patients’ names and genders, while others insist on using what’s in their legal records (legally changing one’s name and gender marker is also a costly process that takes time to complete). In the course of a single visit to the health care system a patient might be called by different names and genders from office to office. Providing a mechanism for patients to register a name and gender for public-facing engagements, regardless of what’s in their legal records, would help avoid the humiliation and stress of public misgendering and ‘dead-naming’.

Woodland suggested that if MCP continues to offer incomplete coverage, government should at least make some sort of financial aid program available to ensure everyone can access the surgery regardless of their financial situation. Above all, he said, government policy-makers need to start listening to trans and gender-diverse residents and draw on their lived experience in developing institutional supports. 

“Why have people with lived experience just sit around, removed from the conversation, when there are so many people who are crying out for change? If it was done in a way that served us better we wouldn’t be having these conversations.”

The Independent approached the Department of Health and Community Services for comment on this story. In response to questions and an interview request about the policy’s accessibility, the Department responded with a written statement which outlined the existing policy.

On the matter of identification, the Department said it “is comparing its related policies against those in other jurisdictions, including federal policies, to determine whether amendments are required for an individual to change their name and/or sex designation on the MCP card.  MCP is also assessing the function and the relevance of the gender marker on the MCP card.”

On the matter of Dinn’s petition, the Department said it “has received a copy of this petition to consider in potential future reviews.”

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