N.S. women with chronic illnesses say court decision, premier's promise could change lives
Following a groundbreaking court decision and an about-face from the premier, two Nova Scotia women with chronic health conditions are still processing how their lives — and potentially thousands of others — could soon change.
Crystal Ellingsen and Jennifer Brady filed a joint judicial review against the Nova Scotia Department of Health in July 2022 after repeated denials of their applications to access out-of-province care. Ellingsen has lipedema, a condition that causes tissue buildup in her arms and legs. Brady suffers from lymphedema, which leads to a painful accumulation of fluid in her legs.
Last Friday, a judge said both women were "treated in a procedurally unfair manner" and the decisions made by the province to deny their care were "unreasonable."
Immediately following the decision's release, Premier Tim Houston said the government "got it wrong" and apologized to Brady and Ellingsen.
Houston promised to reimburse their expenses and legal fees, and pay for Brady's future treatment. He also asked Nova Scotia's auditor general to conduct a review of both cases as well as the entire out-of-province claims process.
WATCH | N.S. judge sides with woman denied out-of-province care for a treatable condition
Ellingsen said she's cautiously optimistic.
"It's one thing to say it. It's another thing to do it," she said.
The 45-year-old mother of three and teacher describes a long, painful road to get to this point. She remortgaged her house to pay more than $100,000 to have four lipedema reduction surgeries in Germany.
Ellingsen said it was either that or eventually being confined to a wheelchair.
"I was on disability and was quickly needing a walking aid and then of course it would be a wheelchair from there. I couldn't play with my kids. I could barely get up the stairs at night. It was horrible," said Ellingsen.
"The cost of getting surgery meant a better life and less complications and less stress on the Nova Scotia health-care system."
Ellingsen recovers in hospital following one of four lipedema reduction surgeries in Germany. She had 20 litres of tissue removed from her legs in total. (Crystal Ellingsen)
She said the surgeries have drastically improved her quality of life. However, due to the crushing debt, her family recently moved to North Carolina for her husband's job in order to pay their bills.
Now with the promise of reimbursement, Ellingsen said this is a "complete reset."
She is also excited about the possibility of clearing the path for others suffering from similar chronic conditions who need better access to care. According to Lipedema Canada, the condition affects one in nine women and is often misdiagnosed. The Canadian Lymphedema Network said two per cent of the population has lymphedema, which amounts to more than 20,000 Nova Scotians.
Before back-to-back surgeries, Ellingsen could only walk for a few minutes at a time and struggled getting up stairs. Following her third surgery in Germany, she climbed eight flights of stairs and celebrated afterward. (Crystal Ellingsen)
Sarah During, a board director for the Lymphedema Association of Nova Scotia, said her group wants to be optimistic about Houston's promises, but the fact the Progressive Conservative leader is in the midst of a provincial election campaign has left the organization's members holding their breath.
"It does make us feel a bit tentative because we need to wait and see how things turn out after Nov. 26 [election day] and then we can become more excited about it," said During.
Brady is also hesitant to believe the promises being made by Houston will become reality.
"Part of me wants to remain hopeful that our political leaders that we elect aren't just interested in politics or interested in winning elections, but I have been made much more cynical about that because of this battle," she said.
Brady, 46, is a mother of two children and occasional columnist for CBC Radio's Information Morning Nova Scotia. In July 2022, she had a procedure called lymphovenous anastomosis (LVA surgery) in Tokyo that helped relieve the swelling in one of her legs. She has always known she would need further surgeries to relieve the painful swelling that has increased in her other leg.
Like Elllingsen, she remortgaged her house to have the $65,000 surgery that was denied by the province. Brady has been unable to consider ongoing care due to the financial burden — until now.
After fighting the province in court for more than two years, Jennifer Brady says she has become cynical about government promises. (Robert Short/CBC)
She said as she combs through her expenses over the last few years, she's becoming increasingly angry as she realizes it doesn't include the emotional toll.
"I've been sitting here adding up the costs for reimbursement, interest on my loan — and it's just money," Brady said.
"How does that in any way add up to the deep, deep cost this has had on me, on my children, on my partner and my mother?"
In his court decision, Justice Timothy Gabriel didn't mince words when he described the women's situation as Kafkaesque, likening their ordeal to a nightmare. He issued a 30-day deadline for both parties to reach an agreement on "the nature of the remedies to be afforded to the applicants now that the [Health] Department's decision have been quashed, in these highly unusual circumstances."
Brady spends at least five hours a day in an inflatable suit that circulates the fluid in her legs. She's hoping to have surgery to relieve her pain and improve her quality of life. (Robert Short/CBC)
Gabriel pinpointed how MSI, the medical insurer for Nova Scotia, refused to acknowledge the flaw in its policy requiring a referral from a Nova Scotia specialist despite there being no such specialist in the province. Both women were denied out-of-province care for this reason.
Richard Norman, lawyer for Ellingsen and Brady, said he hopes the court decision is precedent setting because "people's constitutional rights are on the line."
"It shows the court recognizing and acknowledging that the way the government makes decisions about health care and the process which the government has in place to consider requests for out-of-province or out-of-country care involve people's constitutional rights, involve their Charter rights, to be free from discrimination. And that just shows that these kinds of decisions are very important," he said.
WATCH | A Halifax woman applied for MAID following years of trying to access out-of-province care
The court win may have also saved Brady's life.
In June, she applied for medical assistance in dying (MAID) after years of fighting the province for care and not being able to treat the resulting depression because all medication exacerbated her symptoms.
The clinical lead for the Nova Scotia MAID program, Dr. Gord Gubitz, wrote a letter to the provincial Health Department indicating Brady met all federal criteria for medically assisted death except for one: that the medical condition underlying her request is irremediable. He said there are clear options for care that have been identified and should be explored.
"I never wanted to be in that situation," said Brady. "I didn't want to not be here, but that was the situation I was in.
"[The decision] is a win, obviously, which is a relief. I hope that it means that I'm gonna get the treatment that I need."
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