Two women are asking a Nova Scotia court to review a decision by the Department of Health to deny their claims for overseas health care.
Jennifer Brady from Halifax has lymphedema, a condition that causes fluid buildup and can cause painful swelling, increased risk of skin infections and sepsis, and hardening of the skin.
Crystal Ellingsen, from the Spryfield neighborhood of Halifax, suffers from lipedema, a condition that causes excess fat buildup in the legs and arms, causing pain, swelling and easy bruising.
Both Brady and Ellingsen have tried treatments other than surgery to manage their conditions, but they say these techniques are only designed to treat the symptoms rather than their cause.
They say the surgery is necessary to limit or halt the progression of their diseases and avoid further deterioration in their quality of life and future expense to Nova Scotia’s medical system.
The application for judicial review, filed in the Supreme Court of Nova Scotia on July 22, says the province told Brady and Ellingsen they needed an opinion from a provincially-certified specialist in their conditions. that supports their request for treatment abroad. But in both cases they said that such a specialist does not exist.
“These are impossible criteria to meet,” says Brady. “Not just difficult, but literally impossible.”
Brady began experiencing swelling in his legs after undergoing a radical hysterectomy to treat cervical cancer in 2019. The operation involved removing lymph nodes, which can lead to 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 by wearing a pair of inflatable pants for up to three hours a day that move fluid in the legs to improve drainage.
Despite these techniques – some of which are not financially covered by the province – Brady says she still suffers from debilitating pain caused by swelling and tissue damage. Once a daily runner, the single mother of two now has to carefully allocate the time she spends on her feet each day.
“Honestly, there are days when the pain, the constant pain, is so bad that I feel like I should kill myself. Because what else am I supposed to do? Live in constant pain for the rest of my life ?”
Last November, Brady ended up in hospital with a skin infection that led to a blood infection – a life-threatening condition that can repeatedly occur in people with lymphedema.
She has heard of a surgical procedure called a lympho-venous anastomosis that can greatly improve symptoms of lymphedema – for some, permanently. However, the surgery is not available in Nova Scotia and surgeons performing it elsewhere in Canada have wait lists of years.
Brady found a doctor in Japan willing to perform the surgery and asked MSI to cover the cost of approximately $80,000. She was told she needed a specialist opinion in the province to support her treatment request, but there is no lymphedema specialist in the province.
She asked the Department of Health to review MSI’s decision, but MSI also refused to approve the funding.
So, in June, Brady traveled to Japan, paying for the operation herself by reimbursing her house. It made a “huge” difference, she says, reducing swelling and alleviating some of the worry about a recurrence of a blood infection.
“The dark place I was in isn’t completely over, but it’s like I felt a little more optimistic.”
“We have nothing”
Ellingsen has yet to make the decision to have surgery abroad for lipedema, although she has found a doctor willing to perform it at a hospital in Germany.
The surgery would remove diseased tissue, which is unresponsive to diet or exercise, and relieve chronic pain, swelling and stress on Ellingsen’s joints. Each surgery would cost $12,000, not including travel, and Ellingsen says she would need four or five rounds of surgery.
Like Brady, she was told she needed a referral from a lipedema specialist. Since none exist, MSI suggested getting a recommendation from a particular plastic surgeon. However, this surgeon told her that he was not currently seeing patients with lipedema and that it would be five years before he could see her. Ellingsen said every other plastic surgeon she contacted told her they didn’t treat lipedema or they didn’t treat people with her body mass index.
She, too, appealed MSI’s decision, but the Ministry of Health denied her request to pay for the surgery overseas.
“We have nothing,” she said of people with lipedema in the province. “And I would say almost less than nothing because every turn I go through trying to get some recognition and trying to get some care, there’s a door slamming in my face.”
In the meantime, Ellingsen continues to use compression garments and massage therapy to treat her condition.
She says that if she has to, she will take out a mortgage on her house to pay for the operation. But she says the responsibility should lie with the province.
“The lack of understanding and the failure of our healthcare system to address this issue does not negate my need for care.”
Both women say that if patients like them do not receive surgical treatment, there will likely be a significant cost to Nova Scotia’s healthcare system in the future, including for joint replacement surgery, in the Ellingsen’s case, and emergency treatment for a blood infection, in Brady’s case.
In an emailed statement, Department of Health spokeswoman Khalehla Perrault said there are specialists in Nova Scotia who provide care for patients with lipedema and lymphedema, including care providers primary, vascular surgeons, plastic surgeons, massage therapists, physiotherapists, occupational therapists and dermatologists.
If a specialist determines out-of-province or out-of-country treatment options are appropriate, they may apply to MSI for approval.
Perrault said MSI does not approve out-of-province or out-of-country processing without referral and prior approval.
A judicial review
In their application for judicial review, the women seek reversal of the Health Department’s decision, as well as “other remedies” based on the court’s decision and court costs.
Both want the province to cover the costs of their surgeries and improve care options and policies to allow people to access the specialists and treatments they need.
Brady wants an apology from the Department of Health and Health Minister Michelle Thompson.
“The pain and suffering that I have been going through for over a year now has been devastating to my life. And I have suffered permanent tissue damage, and I feel I owe reparations for that.”
Brady also wants more lymphedema research in the province and both say more health coverage should be available for treatments such as compression garments.