'This is not a cosmetic surgery,' says Manitoba woman fighting for coverage of out-of-country treatment

A Winnipeg woman says her quality of life has drastically improved since going to Germany for water-assisted liposuction to remove painful fat nodules caused by lipedema, a chronic condition that causes painful fat buildup and swelling in the arms and legs.

Sandra McCrea said now she's fighting with the province to have the surgery covered because it is not an available treatment for her disease in Canada.

"[Manitoba Health] turned me down, saying, 'No, we think this is experimental surgery,' even though my German surgeon has been doing this surgery since 1998," she said.

The 61-year-old spent seven weeks in the German town of Schwarzenbach am Wald at the end of 2017 to have three rounds of the liposuction treatment done by Dr. Josef Stutz, a surgeon who specializes in treating lipedema with liposuction.

She said the surgery cost more than $20,000 and she had to remortgage her home in order to pay for the treatment — but she says it has changed her life.

"This is not a cosmetic surgery," she said. "This is a real disease and women have a right to know about it, and they have a right to appropriate health care to combat this."

'Like a rogue fat cell gone bad'

McCrea said she has been living with the fat-cell disorder — which "occurs almost exclusively in women and is poorly understood," according to the U.S. non-profit Lipedema Foundation — since she hit puberty. In her teens, she said, the size of her legs and hips grew disproportionately to the rest of her body.

Doctor after doctor who told her to lose weight, she said, and she tried a variety of diets and exercises, but still had a 54-inch hip measurement with a 33-inch waist.

"It's like a rogue fat cell gone bad," said McCrea. "It will keep you from sleep, it will rob you of your mobility.… My knee joints are pushed way out of whack because of the fat cells that have developed in and around the knee."

McCrea said she finally stumbled on her own diagnosis in 2015 while working as a social worker, assessing seniors for personal care homes — a job from which she's since retired due to pain and mobility issues connected to her lipedema.

She noticed a client's legs looked like hers.

"Thanks to her, I found out what I had. There is no lipedema specialists in Canada," she said.

"The closest thing you can get to getting a diagnosis is getting a vascular doctor to look at you, which I ended up doing."

She starting researching treatments beyond wearing compression tights and massage therapy, and found water-assisted liposuction, which is offered as a treatment in the U.S. and Europe.

McCrae arranged her own surgery in Germany, which is why her first application for out-of-province medical coverage was denied.

"Do not arrange for doctor appointments, transportation or any other care-related services until your doctor's referral request is approved," Manitoba Health's website says.

"If you do not have prior approval, you may be held responsible for any costs you incur."

McCrea said she took the risk because she was on a year-long wait list in Winnipeg to see a vascular surgeon, who she hoped would give her a referral.

Once she got the referral, she applied again, but was denied on the grounds that there wasn't adequate proof that water-assisted liposuction is an efficient treatment for lipedema.

Water-assisted liposuction

Dr. Karen Herbst, an associate professor at the University of Arizona, argues the treatment does work.

​Herbst is the director of the university's TREAT — Treatment, Research and Education of Adipose Tissue — program. Her research is funded by the Lipedema Foundation, which provides funding for research to define, diagnose and treat lipedema.

"I call it sick fat. It's persistent fat, it's painful fat, it is not fat that anyone wants to have on their body," said Herbst, who says studies suggest lipedema may affect up to 11 per cent of women.

"You really have no power over it. In fact, it has power over you."

Herbst said the goal of the liposuction treatment for lipedema is to improve women's quality of life, because once these fat cells develop, they cannot be cured by diet or exercise.​

"The only effective treatment for reducing lipedema fat at this time is liposuction," she said.

"They have really good 20-year data out of Germany showing that for the majority of women who undergo the liposuction for lipedema, the fat does not return."

She said water-assisted liposection is a gentle, but effective, treatment.

"You make small incisions in the tissue and then you insert a thin [tube], and you shoot water into the tissue.… It knocks the fat off and you suction it out."

She said it has only recently become available as a treatment in the United States. Health insurers will cover the costs about 50 per cent of the time, and the onus is on the patient to make a case for themselves, she said.

"When an insurance company is thinking of covering a procedure, they want to know what the data is in their country, so we're actually trying to start collecting data in the U.S.," Herbst said.

"It's not experimental anymore, in my opinion — it works."

Province may not cover 'emerging treatments'

A spokesperson for Manitoba Health said in an email it relies on medical specialists and peer-reviewed research when considering applications for out of province coverage.

"That information, coupled with the individual patient's medical history and diagnosis provided by the treating Manitoba specialist, would be reviewed to determine if a particular treatment was insured in accordance with the regulations under The Health Services Insurance Act," the spokesperson said.

"That coverage may not be granted for emerging treatments or diagnostic procedures where the effectiveness of the treatment has not been established."

McCrea is appealing the province's decision on March 15 before the Manitoba Health appeals panel.

If denied, her only option is to go to Court of Queen's Bench and request a judicial review of the process.