Three Winnipeg women who share the same chronic illness are calling for the province to uphold its agreements and pay for the surgeries to treat them.
Lipedema is a disease that causes painful fat buildup and swelling in the arms and legs, causing pain and immobility. If left untreated, it can lead to another serious condition called lymphedema, marked by a buildup of fluid in body tissue that can lead to sepsis.
The women say they are fighting to get remaining surgeries for lipedema approved after Manitoba Health and Seniors Care pulled its funding before their treatments could be completed.
Emma Cloney, a nurse and native Winnipegger, was diagnosed with stage 3 lipedema in the summer of 2021.
She has received four of seven required surgeries, and three were paid for by Manitoba Health. It pulled its coverage before she received her fourth, so she paid for it out of pocket, at a cost of around $25,000.
“I gave 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.
Precedent-setting approval
To remove painful fat nodules and diseased tissue caused by lipedema, surgeons use specialized liposuction throughout multiple surgeries. There are currently no surgeons in Canada who are qualified to perform the procedure, so lipedema patients need to go through Manitoba Health’s out-of-province medical referrals and look to the U.S. or Germany.
Cloney said she’s since gotten in contact with the first people in the province who were originally approved for lipedema surgery, and says the same thing happened to them.
Twins Kelsey and Kelly Fehr spent years fighting three denials for coverage before funding for their lipedema surgeries were finally approved in 2020 in a precedent-setting decision by the province. They say they jumped through hoops and followed MHSC’s protocols “to a tee,” only to have their funding pulled after receiving only one out of seven surgeries for their condition.
“It feels like the future has been ripped away from myself and from Kelsey,” said Kelly Fehr.
“To be told that you have been approved for funding for a life-altering surgery for a debilitating disease, and then to have that ripped away from you means everything that you gave yourself the opportunity to hope for is gone.”
Kelsey said the 35-year old sisters tried to contact Manitoba Health, but it did not communicate with the Fehrs. Kelly said it left them feeling like their diagnosis is “not worth the funding to get the care we need.”
A spokesperson for the government of Manitoba said it can’t comment on individual cases. It reviews requests on a case-by-case basis, including a review of the standard of care by medical experts.
There is currently no standard of care to treat lipedema in Canada.
Cloney has an appeal hearing with Manitoba Health scheduled on Jan. 26. The Fehrs are awaiting their own hearing date.
CBC reached out to Manitoba Health and the Minister of Health but has not yet received a response.
Surgeries’ effects
All three women maintain the surgeries to treat lipedema are life-sustaining and life-changing, as it allows them to move more freely and reduces their pain and swelling. They say they cannot afford to pay out of pocket for any more surgeries.
Cloney said the surgeries are helping her take control of her life again.
“I went into the OR barely able to stand on my own … on the very first night after surgery, they got me up to walk,” Cloney said.
She said she walked down a long hallway, and four days later she was able to slowly walk two kilometres.
In its denial email to Cloney, MHSC wrote: “For your treatment plan, we only reviewed and approved one treatment/trip at a time. There was no ‘full plan approval’ provided in our prior decisions.”
Manitoba Health wrote that it consulted with the section of plastic surgery of Manitoba — a unit within the Max Rady College of Medicine at the University of Manitoba — and found there wasn’t enough objective data that surgery on late-stage lipedema patients is the standard of care.
It said if Cloney disagrees with the decision, she could file an appeal or pay for the treatment herself.
Cloney disputes this, and provided an approval email sent internally which lists all the surgeries she needs to have completed.
The Fehrs’ letter states they were denied because “an emerging treatment or diagnostic procedure for an illness, injury or condition for which the efficacy of the service has not been established.”
The Fehrs say other countries, such as the U.S. and Germany, have already established the effectiveness of the surgeries.
Digging into denials
All three women say they believe MHSC suddenly denied their coverage due to one reason: cost. The Fehrs said their funding was pulled in June of 2022. Cloney’s was pulled in July last year.
In an effort to further understand why their cases were denied, they submitted Freedom of Information and Protection of Privacy Act requests for more information.
The Fehrs say all they received were pages of redacted information. Cloney, however, said what she received shocked her.
Manitoba Health originally denied Cloney coverage for the surgeries, but when she brought forward the Fehrs’ successful appeal, the department agreed to fund hers too.
In an internal email from MHSC after Cloney’s original denial that she obtained through the FIPPA request, a case manager stated: “Stay tuned, [Cloney] emails or calls me every second day. I believe this will get interesting!”
Cloney’s first referring doctor also sent her an email in February 2022 after receiving information from Manitoba Health’s insurance division. The physician wrote, “I have forwarded your email to [the medical consultant in the division].
“She responded with, Emma is fortunate to have her surgery covered by Manitoba Health. It has been an uphill battle and there is discussion about denying everyone going forward. With Manitoba Health spending as much money as they have on her multiple surgeries, I cannot ask Manitoba Health to pay for an escort [to accompany her at her surgery].”