Three Winnipeg women who share the same chronic illness are calling on the province to honor its agreements and pay for surgeries to treat them.
Lipedema is a disease that causes painful accumulation of fat and swelling of the hands and feet, causing pain and immobility. If left untreated, it can lead to another serious condition called lymphedema, marked by a build-up of fluid in body tissue, which can lead to sepsis.
The women say they are struggling to get approval for their remaining lipedema surgeries after Manitoba Health and Seniors Care withdrew its funding before their treatment could be completed.
Emma Clowney, a nurse and Winnipeg native, was diagnosed with stage 3 lipedema in the summer of 2021.
Emma Clowney shares what her legs looked like before her first lipedema surgery. (Submitted by Emma Clowney)
She received four of seven required surgeries, three of which were paid for by Manitoba Health. He dropped his coverage before she got her fourth, so she paid for it out of pocket at a cost of about $25,000.
“I have given the best years of my life to nursing in this province and when I reached out for help … there was absolutely no help from the province,” she said.
Precedential approval
To remove painful fat nodules and diseased tissue caused by lipedema, surgeons use specialized liposuction during multiple surgeries. There are currently no surgeons in Canada qualified to perform the procedure, so patients with lipedema must go through Manitoba Health’s out-of-province medical referrals and look to the US or Germany.
Clowney said she has since contacted the first people in the province who were initially approved for lipedema surgery, and says the same thing happened to them.
Twins Kelsey and Kelly Fehr spent years fighting three denials of coverage before funding for their lipedema surgeries was finally approved in 2020 in a precedent-setting decision by the province. They say they jumped through hoops and followed MHSC protocols “to the hilt”, only to have their funding stopped after receiving just one in seven operations for their condition.
“I feel like the future has been ripped away from me and Kelsey,” Kelly Fehr said.
Twins Kelsey and Kelly Fehr also have a large amount of papers documenting their correspondence with the province. The sisters are pleading for Manitoba Health to pay for the remainder of their lipedema surgeries. (Walter Bernal/CBC)
“To be told you’ve been approved for funding for life-changing surgery for a debilitating illness, and then to have it ripped away from you, means everything you’ve given yourself the chance to hope for is gone.”
Kelsey said the 35-year-old sisters tried to contact Manitoba Health, but they did not communicate with Fer. Kelly said it left them feeling like their diagnosis “wasn’t worth the funding to get the care we needed.”
A Manitoba government spokesman said he could not comment on individual cases. It reviews claims on a case-by-case basis, including a review of the standard of care by medical experts.
There is currently no standard treatment for lipedema in Canada.
Clowney has an appeal hearing with Manitoba Health scheduled for Jan. 26. The Fehrs are awaiting their own hearing date.
Effects of operations
All three women say the surgeries to treat lipedema are life-sustaining and life-changing because they allow them to move more freely and reduce pain and swelling. They say they can’t afford to pay out of pocket for more surgeries.
Clowney said the surgeries are helping her regain control of her life.
“I went into the operating room barely able to stand up on my own … the very first night after surgery I was made to walk,” Clowney said.
Emma Clowney said she will not stop advocating for other people with lipedema and is scheduled to hear before the appeals panel in two weeks. (Walter Bernal/CBC)
She said she walked down a long corridor and four days later was able to slowly walk two kilometers.
In its denial email to Cloney, MHSC wrote: “For your treatment plan, we have only reviewed and approved one treatment/trip at a time. In our previous decisions, “full plan approval” was not granted.
Manitoba Health wrote that it consulted with the Manitoba Section of Plastic Surgery – a unit at the Max Rady College of Medicine at the University of Manitoba – and found that there is insufficient objective evidence that surgery in patients with late-stage lipedema is the standard. of care.
It says that if Clowney disagrees with the decision, she can file an appeal or pay for the treatment herself.
Clowney disputed this and provided an approval email sent internally that listed all the operations she was required to perform.
The Fehrs’ letter states that they were denied because “an emergent procedure for the treatment or diagnosis of a disease, injury or condition for which the efficacy of the service has not been established.”
Fers say other countries, such as the US and Germany, have already established the effectiveness of the operations.
Delving into denials
All three women say they believe MHSC suddenly denied their coverage for one reason: cost. Ferries said their funding was suspended in June 2022. Cloney’s was suspended in July last year.
In an effort to better understand why their cases were denied, they filed Freedom of Information and Protection of Privacy Act requests for more information.
The Ferries say all they got were pages of redacted information. However, Clowney said she was shocked by what she got.
Kelly Fehr holds the redacted emails sent to her by the province in response to her FIPPA request. (Walter Bernal/CBC)
Manitoba Health initially denied Cloney coverage for the surgeries, but when she submitted Fehrs’ successful appeal, the department agreed to fund hers as well.
In an internal email from MHSC following Cloney’s initial denial, which she received through the FIPPA request, a case manager stated: “Stay tuned, [Cloney] email or call me every other day. I believe it will be interesting!”
Clowney’s first referring doctor also emailed her in February 2022 after receiving information from Manitoba Health’s insurance department. The doctor wrote: “I have forwarded your email to [the medical consultant in the division].
“She responded with, ‘Emma is happy that her surgery is covered by Manitoba Health. It was a tough fight and there is a discussion about refusing everyone to move on. Since Manitoba Health spends as much money as they have on her multiple surgeries, I can’t ask Manitoba Health to pay for an escort [to accompany her at her surgery].”
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