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Two Nova Scotia women are demanding a judicial review of decisions made by the Department of Health to deny coverage outside the country for their surgeries.
Jennifer Brady is a mother living with lymphedema, a progressive disease that causes lymphatic fluid to build up, causing painful swelling. She got the condition three years ago following cervical cancer surgery to remove lymph nodes.
To help ease the pain, Brady said she pays out of pocket to wear expensive compression stockings day and night and see a massage therapist for manual lymphatic drainage.
“I’m doing everything I can to manage the symptoms, so it’s known as conservative therapy,” she told Global News. “All those things that I was doing and none of them were really working to stop or slow the progression of my disease, so it kept getting worse.”
In November, she got a blood transfusion—a common complication from lymphedema—that landed her in the emergency department for five days.
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“Within hours I had a really high fever, especially my left leg was very swollen, very painful, red hot, and red just looking at it, and it put me in the ER with IV antibiotics,” he said.
“That made me need surgery, surgery that was really going to address the underlying disease and not just manage the symptoms.”
The problem is that surgery for lymphedema is not offered in Nova Scotia, and in order to receive funding for out-of-country health care, a referral by a Nova Scotia specialist is required, by province.
But Brady said there is no such expert in the province.
“The province asked me to get a specialist referral from a doctor in Halifax who has a long waiting list of four years,” she said, adding that she had already provided a referral from her general practitioner and her gynecological surgeon. Did what MSI said. was not enough.
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“Facing recurrent blood transfusions as a single parent… I couldn’t wait for four years. I literally slept every night thinking I was going to wake up like I had a life-threatening November Did with blood transfusions,” she said.
And so Brady himself underwent surgery. It borrowed $80,000 to fund the process in Japan.
Brady said, “I was able to borrow against the equity of my home, which as a single parent … is going to be a struggle for me to be able to afford it.”
not the only one
The same is the case with 43-year-old Krystal Ellingson.
She lives with lipedema, a condition that causes excess fat to accumulate in the lower body.
“It’s sad,” Ellingson said, adding that her arthritis has also worsened, and she is now unable to do much, such as play with her children.
“It’s stealing from my quality of life.”
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She, too, is managing her symptoms with compression stockings and massage therapy.
“It doesn’t manage my lipedema at all, it manages my swelling,” she said.
“I’m trying to keep my tissues in good condition when it comes time for surgery.”
He said the only real way to limit or prevent progressive disease is through surgery.
But like Brady, she said she has faced roadblocks after a barrier to access surgery, because she said the procedure is not offered in Nova Scotia.
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She has been unable to find a local lipedema specialist to provide a referral for out-of-country care, or an MSI-approved specialist without a multi-year waiting list, despite providing a referral from her family doctor.
Since lipedema only gets worse over time, she is now considering massive debt to fund herself for surgery.
“This is my children’s future, not mine either. Like, the equity in our home? That’s my only option?” said Ellingson.
“Because I don’t want to be in a walker at age 60 or in a walker at age 50.”
Both women are now demanding a judicial review of their denial of coverage outside their country.
“The policy is keeping us from getting the care we need, and while we have brought it to the attention of the province, they have done nothing to help us,” Brady said.
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In an email, Khalehla Perrault, a spokeswoman for the Department of Health, said the typical referral process would begin with a referral from the resident’s primary health care provider for a consultation with a Nova Scotia specialist.
“If a Nova Scotia specialist determines that out-of-province or out-of-country treatment options are appropriate, they will request approval from an MSI medical consultant,” Perrault said.
“There are specialists in NS who care for both lipedema and lymphedema patients.”
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A judicial review request was filed with the Supreme Court of Nova Scotia on July 22. It said it was the policy that, in both cases, they were unable to meet the requirements because “no such specialist exists.”
“We need care, and the province is preventing us from getting that care,” Brady said.
“I understand the policy is that we need a referral from a Nova Scotia specialist, but I think it needs to be a time-bound process. And as the referral process is written now, it’s time for us to get care.” Access does not provide, especially because we have progressive conditions.
pressure for policy change
While the pair is hoping to find support in the short term, they say that they also want to see the policy change, as it does not serve all Nova Scotians.
“In the long term, Nova Scotia needs to catch up with lymphedema and lipedema with care like the rest of the world,” Brady said.
“Will I have to do a lot more than have surgery in Nova Scotia? One hundred percent, of course I will, but it just isn’t an option.”
Ellingson said she would like to see the policy adapted so that a referral from a GP would suffice.
“I want the province to see a big difference,” Ellingson said. She said that statistically, there are probably 40,000 people living with lipedema in the province.
“Not everyone needs surgery, but the sooner you catch it, the better the outcome. That means less money down the road, it means less stress,” Ellingson said.
“I think if they can push us far enough, then we are the problem of the future government. We are not the problem of this government. But I want to be the problem of this government. Because I want our future government to be Meet long-term goals, but right now we want short-term results.
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