Because patients are the reason for the research, we deserve a seat at the table
I had the opportunity to sit down with experts at the ACTRIMS-ECTRIMS meeting
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Last month, some of the world’s leading neurologists, researchers, and scientists working in multiple sclerosis and related neurological diseases like neuromyelitis optica spectrum disorder (NMOSD) arrived in Toronto, Canada, for the 10th Joint ACTRIMS-ECTRIMS Meeting.
ECTRIMS, the European Committee for Treatment and Research in Multiple Sclerosis, is a big deal. Every three years, it holds a joint meeting with its North American counterpart, ACTRIMS.
As someone living with NMOSD, I was thrilled that this year’s meeting was held in my hometown because for a few days, many of the people working to change the future of this disease were practically in my backyard, and I had the extraordinary opportunity to sit down with some of them.
From research to real life
Ahead of ECTRIMS, I was invited by the Patient Health Alliance, a patient support organization formed by the Guthy-Jackson Charitable Foundation, to participate in its 2026 NMOSD Cutting-Edge Practicum. The event brought many heavy hitters — clinicians, researchers, and major pharmaceutical company leaders — together to discuss some of the complicated questions surrounding treatment and care, and I had the opportunity to tell them my NMOSD journey thus far: the attacks, the treatments, the failures, and everything this disease has asked of me and my family.
I told them about my daughter and what she means to me; how I became the first NMOSD patient in Canada to have a successful pregnancy; and what happened to me at the end of 2025, when I experienced six attacks back to back, received six high-dose treatments of steroids, and underwent four rounds of plasmapheresis. I also shared that my file was to be presented later in the week by my neurology team, and these experts were grateful to put a face to a case study that would be otherwise presented as anonymous.
For me, the significance goes well beyond numbers on a slide. Ultimately, their work lands in the lives of people like me. And in my daughter’s life. The experience gave some of the people doing this work the opportunity to meet someone who is alive, functioning, parenting, and living because of the advances they helped make possible. There’s something powerful about closing that loop between research and real life.
The conversation that concerned me most
Perhaps my biggest takeaway wasn’t about science at all. It was the acknowledgement that not every patient is given the same opportunity to benefit from that science.
We now have remarkable treatments for NMOSD, but having a treatment and having access to it are not the same thing.
Some insurance plans can impose clinical criteria or step requirements before covering particular drugs. That can mean patients have to try another treatment before gaining access to the one their specialist believes is appropriate. I know this because it happened to me.
After I had failed both Enspryng (satralizumab-mwge) and Uplizna (inebilizumab-cdon), my neurologist wanted to move me to Ultomiris (ravulizumab-cwvz). But my private insurer wanted me to try rituximab first.
It’s important to note that these drugs don’t all stop NMOSD in the same way. Think of AQP4-positive NMOSD as an immune attack with several points along the pathway where medicine can intervene. Enspryng targets the receptor for interleukin-6, an important immune signaling pathway in NMOSD. Uplizna targets CD19-positive B-cells involved in the antibody-driven disease process. Ultomiris works to block part of the complement cascade involved in the tissue-damaging inflammatory response. Rituximab, another B-cell-depleting treatment, has been widely used off label for NMOSD, whereas the newer targeted therapies were specifically studied and approved for the disease.
Thankfully, my neurologist fought for me, and Alexion, the manufacturer of Ultomiris, agreed to provide coverage, even though I had private insurance. I know exactly how fortunate that makes me. I must mention, however, that public reimbursement has been moving forward in Canada, and Ultomiris is now available for eligible adults with AQP4+ NMOSD in Ontario.
A seat at the table
I left the evening event feeling incredibly grateful to the researchers who have devoted careers to understanding a disease most people have never heard of. I’m also grateful to the clinicians who continue asking difficult questions about how and when we treat attacks. I’m grateful, too, to the pharmaceutical scientists whose work has given patients like me options that didn’t exist not so long ago. And I’m especially grateful to my neurologist, who didn’t accept an insurance company’s first answer when he believed there was a better option for me.
But I also left thinking about the patients who don’t have someone to fight for them.
A scientific breakthrough is extraordinary. A treatment approval is extraordinary. But neither means much to patients who cannot access the treatment their medical team believes they need.
Sitting in that room here in Toronto reminded me why patient voices belong in these conversations. We aren’t simply the beneficiaries of NMOSD research. We are the reason for it.
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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