Nurse forced to rely on donations to fund surgery

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This article was published 14/01/2023 (966 days ago), so information in it may no longer be current.

A Winnipeg nurse suffering from a debilitating disease says she has been forced into a position where crowdfunding is the only way to cover her medical expenses, after the province denied coverage of specialized surgery.

Emma Cloney said she is furious about how she’s been treated by the province, pointing to a “taunting” email exchange between provincial officials about her situation.

The 38-year-old woman suffers from advanced lipedema, which causes painful, excessive fat build-up in the limbs, leading to deformations and immobility. The genetic disorder is not caused by obesity, and diet and exercise cannot prevent its symptoms.

In January, April and June 2022, the province paid for Cloney to undergo lymphatic sparing liposuction in the United States. The specialized treatment is not available in Manitoba.

In August of that year, Cloney received a letter from an official with Manitoba Health’s insurance division, explaining why she did not qualify for another out-of-province surgery.

“Manitoba Health has taken this position because while surgery for lipedema is a possibility, it has not yet emerged as a proven effective treatment for lipedema… 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,” the letter reads.

“If you disagree with the decision once provided, you will have an option to have this decision reviewed by the Manitoba Health Appeal Board if you choose to file an appeal. As well, you may choose to fund this treatment yourself.”

Cloney did not receive official notice her coverage had been revoked until a month later.

“I was spitting mad. The privileged audacity to suggest to somebody who is on disability that they should find a way to fund medically necessary surgery themselves… It was so insulting. It felt like (Manitoba Health) was taunting me,” Cloney said.

The Sept. 23 letter of denial, which Cloney shared with the Free Press, explained the province was unable to determine a standard of care for lipedema treatments. However, Cloney consulted with more than 15 specialists while preparing her treatment plan application, all of whom recommended she seek lymphatic sparing liposuction outside of Manitoba, she said.

She was not the only one impacted by the decision.

Manitoba Health approved twin sisters Kelsey and Kelly Fehr, 35, for out-of-province lipedema treatments in May 2020. At the time, they believed they had set a precedent for care, but in November 2022, after undergoing only one surgery, their treatment was also cancelled.

“When we were approved, we allowed ourselves to dream of a future that was going to be free of pain, and we would be able to function… It’s been ripped away from us,” Kelsey Fehr said.

“If Manitoba Health can do this to us — reimbursing costs, allowing us to go through a major surgery with the promise of future treatments and then reneging on their promise — it’s a dangerous precedent for all Manitobans,” Kelly Fehr said.

Desperate to learn more about how Manitoba Health came to its decision, Cloney filed a series of Freedom of Information and Protection of Privacy Act Requests.

The documents she received are heavily redacted, sometimes including only an email address with entire pages of text blacked-out. In one email, dating back to December 2021, a health official warns a colleague about Cloney’s persistent pursuit of health coverage.

“A letter is going out today, stating our decision of services available in Manitoba or elsewhere in Canada remain the same as in the denial letter of November 25,” the email reads. “Stay tuned, she emails or calls me every second day. I believe this will get interesting!”

Cloney said the email made her feel as though decisions impacting her quality of life were little more than a game to public health officials.

Cloney has since hired a lawyer to help her appeal the province’s decision. A hearing is scheduled for Jan. 26.

In the meantime, people who know her from Winnipeg’s music community, where she has performed as one part of the folk duo The New Customs since 2016, have set up a GoFundMe drive in her name.

The current target for the fundraiser is $30,000, which is just enough to cover medical expenses incurred out-of-pocket during Cloney’s last surgery and her legal fees. Covering future health-care expenses could cost up to $100,000.

“I always hold out hope (the province will provide coverage) because I know I am right.. but I am nervous that the time it will take to fight with them may leave me permanently disabled,” Cloney said.

Kelly and Kelsey Fehr have also filed an appeal of the decision, although their hearing date is not yet set.

In the meantime, they too are resorting to crowdfunding, something that is frustrating and humiliating for the otherwise private sisters. Currently, they are halfway to a goal of $10,000. The money will hardly scratch the surface of what they ultimately need, Kelsey Fehr said.

“To be put in the position to be as exposed and as vulnerable as we are. To be asking individuals for money to pay for medically necessary, reconstructive surgery is heartbreaking,” she said. “We had never intended for this to go public, but the fact of what Manitoba Health is doing now is just shameful.”

The Province of Manitoba did not respond to request for comment Saturday afternoon.

tyler.searle@freepress.mb.ca