January 25th, 2022 and it was -39 degrees celsius in Manitoba. So cold that your exposed skin can freeze in under a minute. I gather my winter clothes and prepare to make my trip down to the frozen Assiniboine River. It’s midnight and the moon is vibrant and glowing, like a winter’s night sun. My body is still sore and swollen from surgery only 3 weeks before. The cold air wraps my body in ice. Slowly I make my way to the centre of the river, with my hands firmly on my hips I let out a guttural scream. A primal cry of frustration and relief into the night as my breath billows with steam. Tears streaming down my face I am clutching a letter to my chest inside my coat. It is the spoils of my war with Manitoba Health. My approval letter for my hard-fought lipedema surgeries. Yes, my approval letter. I won. But no one talked about the cost of winning.
Approved for surgery
It has been 175 days of silence since I was first approved by the province for surgery. I had proven my case over and over again. Showed that my disease was real, and in desperate need of treatment. I overcame every objection and obstacle through sheer relentless tenacity. And I am so tired. Upon first opening the letter that day I simply crumpled to the floor from the endless stress beset upon me by the province. My silence until now was out of fear of having this tenuous resource ripped from me. The province has been endlessly frustrating and secretive about the status of my coverage. I feared telling the world would mean losing my treatment. Truthfully it may very well still come to that.
I have had 3 surgeries for lipedema between January and June 2022. Each of them was partially covered by the province of Manitoba. Each of them had an endless fight with the province. Manitoba Health has been hell bound on creating nearly impossible obstacles to access treatment. The stress of fighting the government pushed me to every limit I have. It broke my mental health, inflamed my lipedema from stress, and still cost me over $50,000. The fight is not over.
All About Money
Presently, the government has decided that they don’t want to pay for lipedema treatment ever again and have taken steps to tear the coverage away from those of us that have been already approved, as well as prevent anyone from getting covered ever again. The doctors that first aimed to help us get approved for urgently needed surgery have now turned their backs on us. It’s all about saving money at the cost of our health.
There are no heroes here, just new battles to be fought.
How I won
I won my case on the basis of there being prior precedent of coverage for lipedema surgery in Manitoba dating back to 2020. I followed every step in the process
- Getting an official diagnosis from a Manitoba specialist (endocrinologist and vascular surgeon)
- Having a referral to Manitoba Health out-of-country benefits from a Manitoba plastic surgeon (Appropriate Manitoba Specialist)
- Applying for coverage and approval prior to obtaining surgery
- Having my appropriate Manitoba Specialist make a direct referral for care to my USA treating surgeon.
- Getting a new letter of referral for each surgery in the multistage surgical process from a Manitoba plastic surgeon
- Writing over 100 letters to every level of government including MLA’s, Manitoba Premier, the Minister of Health, Deputy Minister of Health, Assistant Deputy Minister of Health, Leader of the Opposition, and Health Critic for the Opposition.
- Going to the media and sharing my private story with the world to pressure Manitoba Health to respond to my endless cries for help. As the Minister of Health failed to respond for months.
- Endlessly following up on each stage of the process with the government to ensure they didn’t drop me through the cracks.
No Standard of Care in Canada for Lipedema
Presently Canada lacks a written Standard of Care for Lipedema due to the limited number of doctors familiar with the condition. The 2021 USA standard of care for lipedema was used to aid my doctors and Manitoba Health in approving my treatment plan. There is a great need for a Standard of Care for lipedema in Canada. Unfortunately, we need the support of Canadian doctors to help create one before the government will globally recognize lipedema sufferers and their treatment needs. More fights to be won.
No one talks about the cost of winning
Today I remain waiting by the mailbox for word from the province on my 4th surgery. It remains to be seen if the province will try to once again refuse me urgently needed medical care in the name of saving themselves money. So why am I telling you this?
Why Now?
I am taking back my power. I will not be silenced by fear. I will not allow the province to pretend I was never here, that I never won. I am worthy of healthcare and so are the others with this awful disease. I wish I could tell you that there is nothing but hope and a paved road to getting the care we all need, but that simply isn’t the case. It has been so isolating not being able to talk to anyone about the nightmare I have been enduring. Sometimes it is our silence that gives our abusers power. I am choosing not to allow that silence anymore.
So my inner warrior stands side by side with me and together we scream into the night. My fight mattered. I will not be silenced. This is the cost of winning.
Yours,
2 Responses
so sorry to hear about the mental anguish on top of your lipedema!! My heart goes out to you and fellow sufferers!