Jennifer Brady of Halifax has lymphedema, a disease 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 Spryfield 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 both tried treatments other than surgery to manage their condition, but they say those techniques are only designed to treat the symptoms, not the cause. They say surgery is needed to limit or stop the progression of their diseases and prevent further deterioration in their quality of life and future costs to Nova Scotia’s medical system. The judicial review request, filed in Nova Scotia Supreme Court on July 22, says the province told Brady and Ellingsen they need an opinion from a provincially licensed specialist about their conditions to support their request for out-of-country treatment. But in both cases, they said there is no such expert. “It’s impossible to qualify,” 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 procedure 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 wearing inflatable pants for up to three hours a day that moves 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 allocate 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 Woolliscroft/CBC) “Honest to God, there are days when the pain, the constant pain, is so bad, I feel like I should just 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 the hospital with a skin infection that led to a blood infection — a potentially fatal condition that can occur repeatedly in people with lymphedema. He learned about a surgical procedure called lymphovenous anastomosis that can significantly improve lymphedema symptoms — for some, permanently. However, the surgery is not available in Nova Scotia, and surgeons who do it elsewhere in Canada have waiting lists of several years. Brady wears compression stockings on both legs — including two on the left leg — to help control 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 Woolliscroft/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 to support her request for treatment, but there is no lymphedema specialist in the province. He asked the Ministry of Health to review MSI’s decision, but also refused to approve the funding. Brady shows how she puts on the tight compression socks every morning after waking up. (Eric Woolliscroft/CBC) So in June, Brady traveled to Japan, paying for the surgery herself by remortgaging her home. It made a “massive” difference, he says, reducing swelling and alleviating some of the concerns about a blood infection coming back. “The dark place I was in isn’t completely over, but it’s like I’m feeling a little more hopeful.”
“We do not have anything”
Ellingsen has not yet taken the step of going abroad for lipedema surgery, although she found a doctor willing to do it for her at a hospital in Germany. The surgery would remove the diseased tissue, which doesn’t respond 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 it would take four or five rounds of surgery. Like Brady, she was told she needed a referral from a lipedema specialist. Since there is none, MSI suggested that you get a referral from a specific plastic surgeon. However, this surgeon told her that he does not currently see patients with lipedema and that it will be five years before he can see her. Ellingsen said every other plastic surgeon she’s come in contact with has told her they don’t treat lipedema or treat people with her body mass index. Ellingsen reviews documents documenting her efforts to obtain approval for out-of-state surgery for lipedema. (Brian MacKay/CBC) She also appealed against MSI’s decision, but the Ministry of Health rejected her request to cover surgeries outside the country. “We have nothing,” he said of people with lipedema in the province. “And I would say almost less than nothing because every turn I turn to try to get some recognition and try to get care, there’s a door slammed in my face.” In the meantime, Ellingsen continues to use compression garments and massage therapy to treat her condition. She says if she has to, she will take out a mortgage on her house to pay for the surgery. But he says the onus should be on the province. “The lack of understanding and failure of our health care system to address this issue does not negate my need for care.” Both women say that if patients like them are not treated surgically, there will likely 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 blood infection. in Brady’s case.
The province responds
In an emailed statement, Department of Health spokeswoman Khalehla Perrault said there are specialists in Nova Scotia who provide care to 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.
Court Check
In their request for judicial review, the women are asking for the Department of Health’s decision to be set aside and for “other relief” as the court determines and court 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 apologizes to the Department of Health and Health Secretary Michelle Thompson. “The pain and suffering I’ve been through for over a year now has been devastating to my life. And I’ve been left with permanent tissue damage, and I believe I should be rehabilitated 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.
