Friends bonding over music and their similar maladies
Comparing notes on care and costs in the United States and Canada
My friend Liz flew in from Texas for a long weekend here in Toronto, and together we crossed something special off our lists: seeing one of our favorite bands live in concert. It wasn’t just a reunion, but a reminder of how music, friendship, and shared experiences can bring light into lives often clouded by illness.
The friendship that Liz and I share has always had an extra layer of understanding. In fact, we met 15 years ago at a neuromyelitis optica spectrum disorder (NMOSD) medical conference, and over the years we’ve worked together as patient advocates. When you’ve both faced hospital stays, infusions, and possible relapses, the small victories, such as having the energy to dance at a concert, feel monumental.
One challenge I kept in mind was that Liz is visually impaired in one eye from an optic neuritis attack years ago. My husband and I were mindful of stairs on her behalf, since depth perception can be tricky, an issue I understand all too well from the several times I’ve had temporary vision loss with my NMOSD.
From left, Elizabeth (Liz) Brammer and Jennifer V. attend a concert Aug. 24 at the Rogers Stadium in Toronto. (Photo by Jennifer V.)
The relationship between NMOSD and MOGAD
Liz and I share more than a love for good music, though; we’re both “professional patients.” I live with NMOSD, and Liz lives with myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD).
For years, NMOSD and MOGAD were often lumped together, but thanks to advances in antibody testing, doctors can now recognize them as distinct disorders. NMOSD and MOGAD can look similar clinically (optic neuritis, spinal cord attacks), but they’re biologically distinct, and antibody testing is critical for diagnosis.
In MOGAD, patients test positive for antibodies against myelin oligodendrocyte glycoprotein (MOG-IgG), a protein on the surface of myelin, which is the protective covering of nerve fibers. In NMOSD, most patients, including me, have antibodies against aquaporin-4 (AQP4-IgG), a water channel protein on astrocytes, which support cells in the nervous system.
I like to say that MOGAD is to NMOSD as NMOSD was once to multiple sclerosis (MS).
2 countries, 2 realities
During Liz’s visit, we laughed about our different accents, grew hungry discussing our favorite foods endemic to our hometowns, and shared the differences between our two countries in living with illness.
In Canada, I rely on our publicly funded healthcare system, which we then top up with private insurance through our employers. It isn’t perfect. Wait times for specialists can be long, and if you live far enough from a major city, access may not be available at all.
It takes a good wait for our federal government, through Health Canada, to review and approve new treatments; it usually wants at least three to five years of positive patient data. After a Health Canada approval, Canada’s Drug Agency (which until recently was the Canadian Agency for Drugs and Technologies in Health) evaluates the cost-effectiveness of the drug, deciding on whether our public drug plans should fund it.
As an example, Ultomiris (ravulizumab-cwvz), the immunosuppressant treatment I take every eight weeks, is on the verge of being approved for reimbursement. In the interim, my private insurance or the compassionate care program through the pharmaceutical company, Alexion, covers the cost. But at least here in Canada, I don’t carry the constant weight of medical bills for hospital visits, doctor appointments, and similar expenses.
Liz’s story is different. In Texas, access to care is swift if you can pay for it, but insurance coverage, or lack thereof, casts a long shadow. She told me about the countless hours she’s spent on the phone with insurance companies, fighting to have treatments approved or scrambling to cover out-of-pocket costs. Even with coverage, the copays for specialized medications can be crushing.
It hit me just how deeply geography shapes our experience of illness. NMOSD and MOGAD don’t change at the border, but the systems that treat it do.
Despite the differences, we recognized familiar struggles. Both of us live with chronic pain, unpredictable fatigue, and the side effects of powerful medications. Both of us know the weight of explaining a rare disease to people who’ve never heard of it, let alone understand its impact. We surmised that our “concert recovery day” was nonnegotiable, because pacing is part of how we live with disease.
Our shared love for music reminded us of our resilience, all we’ve weathered, and the importance of having someone who simply gets it. Liz may live a thousand miles away, but our shared journey with illness bridges the distance.
When Liz hugged me goodbye at the airport, I was reminded that friendship is its own kind of medicine. We may live under different flags, within different systems, but we share a bond that transcends all of it. Together, we remind each other that life with NMOSD and MOGAD isn’t defined solely by limitations, but also by the joy we make space for, whether in a quiet living room over tea together or in a crowded stadium as the lights go down and we sing our hearts out.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.
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