Woman challenges province over reneged medical procedure coverage
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A Winnipeg woman suffering from a debilitating disease says the province has reneged on its promise to provide her health coverage, draining her savings and compromising her quality of life.
“I’ve been totally abandoned by the health-care system. It’s been completely dehumanizing,” said Emma Cloney, who suffers from advanced lipedema, which causes painful, excessive fat build-up in the limbs, leading to deformations and immobility.
The 38-year-old worked as a nurse in Manitoba before the disease impaired her movement to the point she could no longer walk more than 50 metres. She was halfway through a series of life-changing treatments when Manitoba Health revoked her coverage.
“I always believed I lived in an amazing country where, if something happened to me, I’d have access to health care. Now, my very first interaction with a life-altering diagnoses and they’ve put me through hell,” Cloney said.
Lipedema is a genetic disorder not caused by obesity. Diet and exercise cannot remedy its symptoms and treatment requires a procedure, known as lymphatic sparing liposuction, not available in Manitoba.
According to the National Centre for Biotechnology Information, around 11 per cent of adult women worldwide suffer from the disease, making it nearly as common as breast cancer.
Despite the prevalence, lipedema is often unrecognized or misdiagnosed. Its cause is unknown.
Two months after denying Cloney’s initial application for medical coverage, in November 2021, Manitoba Health approved a medical plan allowing her to seek treatment from a lipedema specialist in the United States.
“I’ve been totally abandoned by the health-care system. It’s been completely dehumanizing.”–Emma Cloney
Cloney provided documents to the Free Press showing the provincial government’s approval of the three-stage plan, which included liposuction of diseased tissue and removal of nodules and excess skin.
The documents included a caveat explaining each treatment and follow-up would require a letter of approval from Manitoba Health.
In January, April and June 2022, Cloney underwent three surgeries and had scheduled another for October. The medical fees for all three were reimbursed.
The difference in her quality of life was substantial, she said. Three days after her first surgery, she was able to walk two miles.
In September, weeks before her fourth surgery date, Cloney received a letter from Manitoba Health saying it would no longer cover her treatments.
“I always believed I lived in an amazing country where, if something happened to me, I’d have access to health care. Now, my very first interaction with a life-altering diagnoses and they’ve put me through hell.”–Emma Cloney
Officials had consulted with four plastic surgeons in the province to determine there was “No standard for care” for the specialized procedure.
According to the letter, physicians could not determine the efficacy of liposuction treatment and regulations exclude “elective plastic surgery procedures unless they are medically required, with certain exceptions which are not relevant in this instance.”
“I appreciate your patience as we have worked through this review and that you may be disappointed with this outcome. Manitoba Health recommends you contact your primary care provider to discuss medical care appropriate for lipedema stage 3 and supports for adapting to chronic illness,” the letter reads.
Cloney believes officials may have conflated lymphatic sparing liposuction — a medical treatment — with traditional liposuction, which is cosmetic.
“They have this deluded notion that… anyone who is 40 pounds overweight could just say they have lipedema. It is idiotic… We are talking about people who are literally losing their ability to walk and heading for wheelchairs,” Cloney said.
”(The province) got the bills and didn’t like how much it costs. They don’t want to pay for anyone else, so they just took health care away after it was fully approved.”
Cloney went for her fourth scheduled surgery in October. She did not qualify for insurance coverage in the U.S., so she travelled to Germany. The trip cost her around $30,000.
She still requires at least three more surgeries, which could cost between $17,000 to $25,000 each.
Cloney has hired a lawyer to help her appeal the province’s decision. A hearing is scheduled for Jan. 26.
An independent board with the power to overrule Manitoba Health’s decision will review the case.
“By the end of 2023, I could be fully working as a nurse again and back in the driver’s seat of my life, but only if I finish my treatments,” Cloney said. “This is life-sustaining, medically necessary, urgent treatment… Should I have to beg for health care?”
Manitoba Health Minister Audrey Gordon — who Cloney said she has sent hundreds of letters to since her claim was denied in 2021 — did not respond to requests for comment Tuesday.
In an email statement, a provincial spokesperson said the province cannot comment on the case and there are “many potential variable… The province considers coverage requests on a case-by-case basis, so it would not be appropriate to generalize about what does or does not meet the criteria.”
Updated on Saturday, January 14, 2023 2:00 PM CST: Corrects date of scheduled hearing to Jan. 26 from 24