I close my eyes and imagine myself as a fierce warrior woman. Hair pulled back and braided with tines of metal laced between the braids. Face painted in dark smudges of greasepaint. A fur wrapped around my shoulders and hands on my hips. Standing in a power stance embracing the surge of empowerment and capability that this warrior woman embodies. In my weak moments, I turn to her. Being a fighter takes its toll on me. Between living in constant pain and racing in circles to meet with all the doctors to build a strong case for out-of-country coverage with Manitoba Health sometimes I feel like I will break instead of bend.
In my last blog, I talked about the exhaustion of waiting for an answer back from Manitoba Health while their medical consultant reviewed my application for lipedema surgery in California with Dr. Jaime Schwartz. Last Friday word came in the form of a rejection letter.
Denied... But
I had spent weeks ruminating on all the possible outcomes from the letter from Manitoba Health. Would they argue that my surgery is cosmetic? Experimental? Or some other technicality? Or would they approve my case and leave me as a grateful puddle on the floor?
When word finally arrived it was what I expected, a denial. However not for the reasons I assumed. It was a weak denial based on only 2 factors.
Manitoba Health reasons for denial of coverage:
“MHSC did not receive a referral by an appropriate Manitoba specialist to an out-of-country physician for care and treatment that cannot be adequately provided in Manitoba or elsewhere in Canada.”
Stating that although my family doctor had consulted Dr. Schwartz before my application, the consultation needed to come from my “appropriate specialist” (i.e Endocrinologist, Plastic Surgeon, Vascular Surgeon from Manitoba). The was an easy-to-fix technicality so I called my endocrinologist’s office to make an urgent in-person appointment. We needed to rally the troops to fight back again Manitoba Health.
“Canadian resources have not been exhausted, as liposuction can be provided in Manitoba or elsewhere in Canada.”
This second reason for denial was laughable. The “medical consultant” had been provided 36 current (2018 -2021) peer-reviewed scholarly articles on lipedema. All of which explained the difference in treatments for lipedema liposuction as opposed to cosmetic liposuction. It was clear that the medical consultant didn’t bother to read or review this information at all and rather just skimmed the application and said “hey we do liposuction in Manitoba!”.
Appeals could take 6 months
The letter from MHSC (Manitoba Health and Seniors Care) stated that the only option if we disagreed with the decision was to file an appeal. The appeals process could take six months or more. My surgery is in 30 days. So we needed a better plan.
I got on the phone with Manitoba Health and asked if my endocrinologist (appropriate MB specialist) could add more information to the claim for re-review rather than going to appeal. OR alternately if we could simply apply again with updated information. MHSC agreed that we could simply resubmit new information for a second review from the medical consultant. This was the game-changer.
We were down but not out. So I raced off to my endocrinologist to get the process moving.
Channelling my inner Warrior Woman
Fight back with Facts
Time is not on my side, so I knew that I had to do everything possible to help my doctor help me. I began pulling research that spoke directly to why lymphatic sparing liposuction for lipedema differs from the liposuction available in Manitoba. I took the liberty of writing a letter for my doctor to review and use if he wanted to support my claim. I brought a paper copy to our appointment and crossed my fingers that he wouldn’t be offended that I had taken these liberties.
Grateful for my efforts
My endocrinologist is truly kind. He is thoughtful with me and happy to work as a powerful advocate for my right to access healthcare. I handed him my proposed letter to MHSC and he thanked me for taking the time to write it. He commended me on the skill and quality research in the letter. I felt honoured as a patient and as a colleague. He said he would review the letter and modify as needed and send it to MHSC first thing in the morning.
He immediately consulted doctor Schwartz while I sat in the office. He attached the fax of the consult (referral) to the letter headed for Manitoba Health. Just like that, we were ready to fight back. Less than 72 hours after being denied life-saving medical care I was back in the driver seat and… waiting again.
SECOND CHANCES
The following is the letter describing why lipedema treatment liposuction is greatly different from cosmetic liposuction provided here in Manitoba and Canada. Names have been removed for privacy.
Please accept this letter of further clarification as to the nature of the specialized lymphatic sparing liposuction required to treat Ms. Patient’s advanced stage Lipedema.
Further to your letter detailing denial of coverage based on the following:
• MHSC did not receive a referral by an appropriate Manitoba specialist to an out-of-country physician for care and treatment that cannot be adequately provided in Manitoba or elsewhere in Canada.
• Canadian resources have not been exhausted, as liposuction can be provided in Manitoba or elsewhere in Canada.
With regards to the referral please see attached facsimile report detailing the referral from Dr. Endocrinologist (Manitoba) to Ms. Patient’s treating plastic surgeon Dr. Jaime Schwartz of Total Lipedema Care (California USA).
With regards to the “Canadian resources have not been exhausted, as liposuction can be provided in Manitoba or elsewhere in Canada.”
Please be advised that the treatment of lipedema requires a plastic surgeon with expertise and experience in lymphatic sparing liposuction. The procedure is highly specialized and can only be safely performed by an experienced lipedema specialist. Conventional liposuction techniques as provided in Manitoba are unsafe for lipedema patients as the use of the same can lead to damage to the lymphatics and secondary resulting lymphedema. Please review the following citations from scholarly peer-reviewed sources on the treatment and surgical management for lipedema.
“Lipedema reduction surgery should be performed by surgeons experienced in the care of people with lipedema, with expert knowledge of the anatomy and function of lymphatic collection systems, using meticulous care to avoid lymphatic injury.” – Herbst, K. L., Kahn, L. A., Iker, E., Ehrlich, C., Wright, T., McHutchison, L., Schwartz, J., Sleigh, M., Donahue, P. M., Lisson, K. H., Faris, T., Miller, J., Lontok, E., Schwartz, M. S., Dean, S. M., Bartholomew, J. R., Armour, P., Correa-Perez, M., Pennings, N., … Larson, E. (2021). Standard of care for lipedema in the United States. Phlebology. https://doi.org/10.1177/02683555211015887
“It is important to note, however, that the techniques employed for lipectomy of lipedema fat are different from the techniques used for cosmetic liposuction. Specifically, the techniques employed for lipedema liposuction utilize devices that remove fat in a gentler manner, such as the vibrating cannula associated with power-assisted liposuction or water-assisted liposuction. Reports have indicated that these methods may damage less lymphatic tissue than traditional techniques and therefore result in “lymphatic-sparing” adipose removal. Likewise, most surgeons treating lipedema with liposuction utilize specialized cannulas and orient the cannulas longitudinally within the lipedema subcutaneous adipose tissue to minimize potential injury to lymphatics. In addition, the volume of wetting solution used in these patients is often much less than that used in traditional liposuction.”
– Buck, D. W., 2nd, & Herbst, K. L. (2016). Lipedema: A Relatively Common Disease with Extremely Common Misconceptions. Plastic and reconstructive surgery. Global open, 4(9), e1043. https://doi.org/10.1097/GOX.0000000000001043 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5055019
Excerpt from the Standard of Care for Lipedema for the USA (2021)
4.1. Lipedema reduction surgery is currently the only available technique for removing abnormal lipedema tissue such as adipocytes, nodules, fibrotic extracellular matrix, and other non-adipocyte components. It is also the only treatment that slows the progression of lipedema and ideally would be performed before complications and disabilities from lipedema develop.110,111 (⊕C)
4.2. Lipedema reduction surgery utilizes suction lipectomy (liposuction), excision and manual extraction that spares blood and lymphatic vessels.17 (⊕⊕C)
Lipedema reduction surgery significantly improves symptoms,110–112 mobility, stance, gait,38 valgus rotation/deformity of the knee and ankle, quality of life, and redistributes and restores the plantar arch.113 It also improves lymphatic symptoms, reducing the need for compression and manual therapy110–112,114 and improves lymphatic function as shown by radionucleotide lymphangioscintigraphy.115
The types of suction lipectomy recommended for people with lipedema are based around tumescent liposuction which uses a solution injected into the tissue to decrease pain and bleeding.116 Other mechanical methods can also be used such as Water Assisted Liposuction (WAL)114,117 and Power-Assisted Liposuction (PAL).118 – Herbst, K. L., Kahn, L. A., Iker, E., Ehrlich, C., Wright, T., McHutchison, L., Schwartz, J., Sleigh, M., Donahue, P. M., Lisson, K. H., Faris, T., Miller, J., Lontok, E., Schwartz, M. S., Dean, S. M., Bartholomew, J. R., Armour, P., Correa-Perez, M., Pennings, N., … Larson, E. (2021). Standard of care for lipedema in the United States. Phlebology. https://doi.org/10.1177/02683555211015887
Significant efforts have been made to find an appropriate treatment provider for Ms. Patient in Manitoba and Canada at large. Despite consultations with multiple, well-respected plastic surgeons Canada-wide, it has been determined that there is not an appropriately trained and qualified care provider for the treatment of Lipedema in Manitoba or Canada.
(Listed all the plastic surgeons consulted below)
Each of the plastic surgeons identified that the treatment of Lipedema is a specialized procedure well outside their scope of practice and expertise.
I trust you will find this information satisfactory to support the need for MHSC to provide complete out-of-country coverage for Ms. Patient’s medically necessary lipedema surgeries with Dr. J. Schwartz.
Please feel free to contact me for any further information.
So many letters
My MLA also wrote a letter of support to the Minister of Health in Manitoba. While I have not yet heard back from the Minister I am hopeful that the topic of lipedema is on the lips and in the ears of policymakers in this province.
Dear Minister Gordon,
I am writing to request your assistance on behalf of constituent, Ms Patient from Winnipeg, MB.
Ms. Patient was recently diagnosed with advanced stage 3 lipedema. Lipedema is a loose connective tissue disease predominantly found in women. It can be very painful and can severely impair mobility.
Ms. Patient has seen two general practitioners, three endocrinologists, and has been referred to plastic surgeons, vascular surgeons, and geneticists, none of whom were able to come up with a treatment plan for her lipedema. I have a family member with this condition, and I know from her experience that there are almost no treatments available in Canada for lipedema. For this reason, I completely empathize with Ms. Patient’s experience, and I hope to help her access whatever care she can.
The treatment option identified by 6 international lipedema specialists that can help reduce Ms. Patient’s pain and improve her mobility is a surgery called Lymphatic Sparing Liposuction. This surgery is necessary to remove the diseased fibrotic tissue from her arms and legs. It is not available in Manitoba.
Ms. Patient is a young woman who has given so much of herself to care for others in her profession as a nurse. She has a genetic condition that will become more painful over time and progressively impact her mobility including her ability to work. At this time, she needs the compassion and understanding of you and your department to re-evaluate her file and consider approving the recommended course of treatment that will require out of province surgery.
Respectfully,
Lisa Naylor MLA
Change is coming
While meeting with a Winnipeg-based plastic surgeon last evening they told me that 2 women before me have been approved for surgical treatment in California. I had heard this as a rumour but to have it substantiated was very exciting. This doctor agreed to also write to MHSC on my behalf asap in the hopes of adding more support to the case for approval.
While we met the doctor told me something very interesting. Manitoba Health is calling a meeting of all the local plastic surgeons to review Lipedema and to make recommendations on a standard of care for same. I was told that there have been so many patients coming forward and requesting out-of-country surgical coverage that the province now needs recommendations on how to cover us. This could be the next step in a powerful change in the level of struggle for all of us. I remain hopeful.
Another week to wait
I am back to waiting for word back from the medical consultant at MHSC as they decide my fate regarding will they or won’t cover my upcoming surgeries in California. I am trying to conserve my energy and say my goals out loud into the universe. Speaking our goals out loud gives them power, brings them to life. I say to myself, I am worthy of care, I will be successful, everything is going to work out. There is no losing here, only steps toward fighting for care. If it doesn’t happen today my efforts still pave the road for tomorrow. One way or another progress is happening here.
My inner warrior woman stands hands on hips, fearless and powerful. My body may be broken but my spirit is fierce. I can’t wait to open that approval letter and howl into the night air like a victory cry.
Thanks for staying with me on this journey.
One Response
I love reading your blog and how you express the deep feelings you feel! You are going to be successful – it’s coming very soon – I can just feel it!
You have the support around you there in MB – now go get that win girl! YOU GOT THIS and we all stand here beside you xo