There is restlessness in waiting. The kind of mind-numbing fixation that robs you of your last moments of sleep every morning and eats at you in every quiet space during the day. The momentary reprieve of distraction keeps the constant worry away even if only for a moment.
I wake up tired, I go to sleep medicated. I am waiting for word on if my life will ever return to normal.
How did we get here?
As many of you know I am working towards getting coverage from Manitoba Health for my lipedema surgery and treatments. There are so many steps to this process that it often feels like a David and Goliath story. Below is a list of the steps I have taken to get thus far.
- Meet with a Family doctor for acknowledgment of lipedema. Ask for a referral to Manitoba specialist (vascular surgeon, plastic surgeon, endocrinologist)
- Finally saw an endocrinologist that was able to confirm my diagnosis and write a letter of referral to Manitoba Health Out-of-Province claims.
- Follow up with MB Health and add supplemental information to the claim including (my narrative story of Lipedema, scholarly articles found on the resources page, 3 letters of medical necessity, list of conservative treatments (compression, MLD, vibration, swimming, Theragun)
- Reach out to several plastic surgeons in Manitoba seeking letters that they do not treat lipedema to demonstrate the clear lack of available care. Presently this step is my missing piece.
- Write letters to the Minister of Health, local MLA and the premier of Manitoba asking for advocacy with my case.
To understand the barriers to accessing care I had to first understand the application process and reasons why others in my situation had been rejected. First, understand the application process to Manitoba Health out-of-province claims.
To apply to Manitoba Out of province claims to cover your lipedema surgery in another country you must do the following.
- A qualified specialist in Manitoba must make the application on your behalf – the referral for care will not be accepted from your family doctor and we as citizens cannot apply on our own.
- The referral for care must include a letter of medical necessity from your specialist – stating that the surgery being requested is medically required for treatment. This letter must come from your Manitoba specialist or MB Health may reject your claim.
- Once your claim is submitted by your doctor you can follow up with the out-of-province claims department to add supplementary information to your claim. I did this by calling 204-786-7303 and asking to add supplemental information to my claim. They gave me an email address to send my information. I added letters from my lipedema surgeon, letters of medical necessity from my family doctor and surgeon, as well as research that informs the agent about lipedema and its treatments, the WHO classification of lipedema, and the narrative story of my lived experience with lipedema.
There is a restlessness in waiting
In the footsteps of those that came before me
In my review of the appeals of women that came before me, I was able to identify a few common barriers. The review identified several specifics so I focused on overcoming the most obvious reasons for the denial.
- Manitoba physician did not consult the lipedema surgeon: Please ensure your doctor here in Manitoba does a formal consultation to your perspective lipedema surgeon. This process is fast and simple and is common practice for your doctor. Come prepared with your doctors’ contact information including fax number. Have either your family doctor or your Manitoba specialist make the referral. Ensure all the dots are connected.
- Get letters from Manitoba surgeons that clearly state they cannot treat lipedema here in Manitoba. This is tough as you will get a ton of run-around. Keep trying. It is important to demonstrate that this surgery cannot be done by just any plastic surgeon. Otherwise, Manitoba Health will simply deny because they think the procedure was available in the province.
- Ensure you apply for Manitoba Health Out of Province coverage before going for surgery. They will still likely deny us on our first attempt but this way you have done your due diligence.
Putting Pen to Paper
I wrote the following letter to my local MLA, Health Minister, and Premier of Manitoba asking for advocacy for covering my lipedema treatments.
“Dear Honourable MLA,
I am writing to you today to plead for advocacy with a medical matter of great urgency. My name is Emma I am 37 and a full-time nurse here in Winnipeg Manitoba. During the pandemic, I was hurt on the job and have found myself on leave. During this leave, I was diagnosed with a poorly understood condition called Lipedema.
“Lipedema is a loose connective tissue disease predominantly in women identified by increased nodular and fibrotic adipose tissue on the buttocks, hips and limbs that develops at times of hormone, weight and shape change including puberty, pregnancy, and menopause. Lipedema tissue may be very painful and can severely impair mobility. Non-lipedema obesity, lymphedema, venous disease, and hypermobile joints are comorbidities. Lipedema tissue is difficult to reduce by diet, exercise, or bariatric surgery.” – Standard of care for lipedema in the United States 2021
Currently, I have been diagnosed with an advanced stage (3) of Lipedema and am facing tremendous obstacles to obtaining care for my condition and chronic pain. Presently my lipedema pain and effect on mobility are preventing me from returning to my duties as a full-time nurse. There is no cure for lipedema, but there are treatments. Unfortunately, those treatments are not available in Manitoba or Canada for that matter.
I have seen two family doctors, 3 endocrinologists, been referred to plastic surgeons, vascular surgeons, and genetics. All avenues have turned up no treatment options in Canada. Most of the doctors here had never heard of lipedema, and those that knew of it had never treated anyone with it.
I have consulted 6 lipedema specialists around the world including in the USA, Germany and Spain. Each of these doctors confirmed my stage 3 lipedema and informed me that the only treatment option that can help reduce my pain and improve my mobility is surgery.
The surgeries required are lymphatic sparing liposuction performed by an expert physician that will remove diseased fibrotic tissue from my arms and legs. This procedure is medically necessary and has been deemed as such by my doctors and specialists here in Manitoba.
Presently, Manitoba Health has denied all previous claims for women in my situation on the basis that liposuction is classified as “cosmetic”. Liposuction is commonly used in reconstructive surgeries for a variety of reasons and is not exclusively cosmetic. However, this nomenclature is creating a discriminatory bias for women with lipedema.
This disease affects up to 11% of women but is commonly misdiagnosed as obesity. I used to live an active and full life and now I am suffering.
I need your help to please to compel Manitoba Health to cover my medically necessary (not cosmetic) lipedema surgery.
As a nurse I provide care, but as a patient, I cannot access care. Please help me remove these barriers and regain my life.
Thank you for your kind consideration and advocacy in this matter. “
I am very familiar with lipedema
The Response from my MLA
“Hello Emma,
Thank you for your email.
I am very familiar with lipedema because a close family member was diagnosed with the condition in 2018. Since then, we have done a lot of reading and pursuing of options for management and treatment. So, I do have an understanding of the pain and mobility challenges this has presented for you and I am aware at the lack of specialists or even regular health care practitioners who know anything about lipedema. I’m so sorry to hear what you have gone through.
I would be very happy to write an advocacy letter to the Minister of Health on your behalf.
I will flag this issue with Uzoma Asagwara, the health critic for our party, so that this issue is on our radar if we become government after the next election.
Wishing you well, Lisa”
Can you believe it?! My first response from the government and it was one of understand and offers to help. I have to believe that there are more advocates out there with a knowledge of my disease. I am so grateful for the advocacy I have found in my local MLA. I encourage each of you to send those letters (emails) to your MLA as well.
Manitoba Health
My application for surgical coverage now rests with the medical consultant for Manitoba Health. I have been told that I should have their decision letter by next week or the week after.
I keep imagining what it would feel like to have them validate my disease and say YES to covering my surgery with Dr. J. Schwartz. I think I would cry, maybe dance around the house and shout in the street.
Realistically, I know that it is more likely I will be denied and need to take my case to the appeal board. The fluctuation between worry and hope is a rollercoaster.
I have done everything I can do
The power of suggestion
As I prepare myself for my upcoming surgery (January 2022) in California I am finding myself feeling anxious much of the time. Being on the support groups on social media is a double-edged sword. On one hand, the support of others is an amazing resource and keeps this disease from feeling so isolating. On the other hand, the worst-case scenario stories about others’ surgical experiences are often anxiety-provoking.
I remind myself that everyone has a different experience with each doctor and some people might love a doctor and the next person may hate them. I have to trust my judgement and sit confidently with my choice of doctors. I am on a journey to regain control of my life and I am at the helm of that ship. I cannot be swayed by the seas of suggestion.
Life savings
My life savings in on the line. What is a life savings for… if not for saving my life? I am prepared to move forward with or without the help of the province. I realize, however, this is a privilege and that so many of us do not have that option. It is for that reason that I am fighting for all of us.
I hold my breath and wait for word from the province to see if I will be granted access to healthcare. Like so many that came before me and will come after me, I am fiercely fighting for my right to be covered.
Canada is what feels like a lifetime away from the level of understanding that other countries have shown with lipedema. I know that change, big change, systemic change, happens in small steps. Each time one of us stands up and says’s “I am worthy of care, and I won’t be silent” and applies to be recognized by the government we move closer to ALL of us being covered.
Channeling my inner Warrior
Somedays I don’t feel so strong. I am tired, in pain and want to quit. It feels like climbing that mountain in Montana. I can’t see the end yet but it’s one foot in front of the other. Using my voice will always be worth it. I imagine my daughter having to go up against this Goliath in her lifetime and I feel a surge of empowerment. I channel my inner warrior because I know the actions I take today will carve the path for those behind me.
Today I am waiting… one day soon I hope to be celebrating.
6 Responses
Good luck Emma. It’s so not easy. I did 15 appeals in Massachusetts. Finally got 3 surgeries- 2 reimbursed, 1 covered. All out of state. Best wishes to you. Keep on fighting.
That is amazing Carol. What a journey! I hope
to be so fortunate.
That is truly amazing. You go girl!