Two women are asking a Nova Scotia court to review a Department of Health decision to deny their claims for out-of-country health care.
Jennifer Brady of Halifax has lymphedema, a condition that causes fluid to build up and can cause painful swelling, an increased risk of skin infection and sepsis, and hardening of the skin.
Crystal Ellingsen of Halifax’s Spreefield neighborhood has lipedema, a condition that causes excess fat to build up in the legs and arms, causing pain, swelling and easy bruising.
Brady and Ellingsen have tried treatments other than surgery to manage their condition, but they say those techniques are only meant to treat the symptoms, not the cause.
They say surgery is needed to limit or stop the progression of their illnesses and avoid further deterioration in their quality of life and future costs to Nova Scotia’s medical system.
The judicial review application, filed in the Nova Scotia Supreme Court on July 22, says the province told Brady and Ellingsen they needed an opinion from a provincially licensed specialist about their conditions supporting their request for outside treatment. the country. But in both cases they said that there is no such specialist.
“It’s impossible to meet criteria,” says Brady. “Not just difficult, but literally impossible.”
“Constant Pain”
Brady began experiencing swelling in her legs after undergoing a radical hysterectomy to treat cervical cancer in 2019. The surgery involved removing lymph nodes, which can cause lymphedema in some patients.
She treated the swelling with a combination of compression stockings, a type of massage called manual lymphatic drainage, self-massage and wearing a pair of inflatable pants for up to three hours a day, which move fluid in the legs to improve drainage.
Despite these techniques — some of which are not covered financially by the province — Brady says she still suffers from debilitating pain caused by the swelling and tissue damage. Once a daily runner, the single mother of two now has to carefully time the time she spends on her feet each day.
Jennifer Brady has lymphedema and paid $80,000 out of pocket to have surgery in Japan. (Eric Uliscroft/CBC)
“Honestly, there are days when the pain, the constant pain, is so bad that I feel like I should just kill myself. Because what else am I supposed to do? I live in constant pain for the rest of my life?”
Last November, Brady was hospitalized with a skin infection that led to a blood infection, a potentially fatal condition that can occur repeatedly in people with lymphedema.
She learned about a surgery called lymphovenous anastomosis that can significantly improve lymphedema symptoms—for some, permanently. However, the surgery is not available in Nova Scotia, and surgeons who perform it elsewhere in Canada have waiting lists of several years.
Brady is wearing compression stockings on both legs — including two on his left leg — to help control the swelling. A pair costs about $400 and lasts three to four months. She wears a different type at night, which costs about $300 a pair. (Eric Uliscroft/CBC)
Brady found a doctor in Japan willing to perform the surgery and asked MSI to cover the roughly $80,000 cost. She was told she needed an opinion from a specialist in the province supporting her request for treatment, but there was no lymphedema specialist in the province.
She asked the Department of Health to review MSI’s decision, but it also refused to approve funding.
Brady demonstrates how he puts on the tight compression socks every morning after waking up. (Eric Uliscroft/CBC)
So, in June, Brady went to Japan, paying for the surgery herself by mortgaging her home again. It has made a “huge” difference, she says, reducing swelling and alleviating some of the worry about a blood infection coming back.
“The dark place I was in isn’t completely over, but I feel like I’m feeling a little more hopeful.”
“we have nothing”
Ellingsen has not yet taken the step of going abroad for lipedema surgery, although she has found a doctor who is willing to perform it at a hospital in Germany.
The surgery will remove diseased tissue that doesn’t respond to diet or exercise and relieve the chronic pain, swelling and stress on Ellingsen’s joints. Each operation will cost $12,000, not including travel, and Ellingsen says she will need four or five rounds of surgery.
Like Brady, she was told she needed a referral to a lipedema specialist. Since one does not exist, MSI suggested getting a referral from a specific plastic surgeon. However, that surgeon told her that he was not currently seeing patients with lipedema and it would be five years before he could see her. Ellingsen said every other plastic surgeon she contacted told her they don’t treat lipedema or treat people with her body mass index.
Ellingsen reviews documents documenting her attempts to get approval for out-of-state surgery for lipedema. (Brian McKay/CBC)
She also appealed MSI’s decision, but the Ministry of Health rejected her request to cover the operation abroad.
“We have nothing,” she said of people with lipedema in the province. “And I would almost say less than nothing because every step I take to try to get some recognition and try to get care, the door slams in my face.”
In the meantime, Ellingsen continues to use compression clothing and massage therapy to treat her condition.
She says she will take out a mortgage on her home to pay for the surgery if she has to. But she says the onus should be on the province.
“The lack of understanding and failure of our health care system to address this problem does not negate my need for care.”
Both women say if patients like them don’t get surgical treatment, there are likely to be significant costs to Nova Scotia’s health care system in the future, including joint replacement surgery, in Ellingsen’s case, and emergency treatment for a blood infection. in Brady’s case.
The province is responsible
In an emailed statement, Department of Health spokeswoman Khalehla Perrault said there are specialists in Nova Scotia who care for patients with lipedema and lymphedema, and that if a specialist determines out-of-province or out-of-country treatment options are appropriate, they can submit a request to MSI seeking approval.
Perrault said MSI does not approve treatment outside the province or country without a referral and prior approval.
Judicial review
In their request for judicial review, the women are asking for the Department of Health’s decision to be overturned and for “other relief,” as the court defined it, and legal costs.
Both want the province to cover the cost of their surgeries and improve care options and policies to allow people to access the specialists and treatment they need.
Brady is demanding an apology from the Department of Health and Health Minister Michelle Thompson.
“The pain and suffering I have been through for over a year now is devastating to my life. I was left with permanent tissue damage and I believe I owe some compensation for that.”
Brady also wants more lymphedema research in the province, and both say there should be more health coverage for treatments like compression garments.
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