Last Friday I got the opportunity to contribute my patient testimony durning the public comments session of the ICER Midwest CEPAC Public Meeting on AMX0035 and Oral Edaravone for Amyotrophic Lateral Sclerosis. This is always something I enjoy doing because I want the people making decisions about ALS to know who those decisions impact.
From ICER.org : To improve access and affordability while retaining the incentives necessary for future innovation, ICER transparently reviews all available evidence to help align a treatment’s price with how well it improves the lives of patients and their families.
Midwest CEPAC directly engages clinicians, patients, and payers during public meetings to discuss implications of the evidence for clinical decision-making and coverage policies.
Sunny Brous Remarks:
Hello everyone, my name is Sunny Brous and I’m excited to share my story with y’all today. I’m 35 and live in my tiny hometown of Hico, TX.
It’s important that you know my hometown has less than 1300 people, because it gives depth to the fact that we all had to play every sport so that there were enough to play said sport. It’s also important that you know this love for sports and hyper-involvement carried me through 6 years of college and catapulted me into the workforce. I hope that smidge of knowledge about who I am at my core strengthens your understanding of my heartbreak when in April 2013, at 26, I could no longer close my glove during a softball game and my eventual devastation of diagnosis with ALS just weeks before my 28th birthday.
There are a lot of things to hate about this disease but in the sake of time and strains on the limits of my positivity, we’ll try to keep it brief. Now, I know you’re thinking “she’s too young and vibrant for terminal disease” and believe me, I could not agree with you more. That’s one of those “zero fun, sir”, annoyingly hard to pronounce and frustrating nuisances about ALS – heterogeneity. See, my disease progression is mine and mine alone. My ALS doesn’t look like Steve’s or any number of people you know in this community. There’s no one size fits all, no equation that balances the symptoms to lifespan, and no “passing Go to collect $200”.
I am part of a group ‘called Her ALS Story’. We are made up of women who were all diagnosed before our 35th birthday.. Some members are veterans of this disease, utilizing various forms of adaptive technologies to survive day to day. Some are in what we call their ‘rookie season’, learning exactly how much normalcy they’re losing with each symptom. And while each of us has an individual story, we all deserve to be reflected in an analysis of the benefits any treatment will have on our lives. We get to determine what major life goals we still want to achieve. .
I was fortunate enough to start Radicava months after its approval in the US and remain on the drug through July 2020. After a few peripheral IV rounds without reaction, I had a hot date for some new hardware in my chest to expedite drug delivery. No news is good news with ALS, so in 14 day intervals for numerous months I endured what I lovingly dubbed ‘Radicava Ridiculousness’ with little noticeable effect. That was the case until I got a first class ambulance ride to the emergency room and a 2 star, 3 day stay in ICU with sepsis from my port. Months later we scheduled an additional appointment, multiple hours from home to have Paula, my port, removed from my body. It seems obvious to me, but for the sake of covering all the bases, it should be recognized that there is value to the oral drug that is not highlighted in this review, yet can make a big difference in my quality of life. As charming as my rural, small hometown is, it’s important to know the detriment of having a terminal disease in rural Texas is palpable. Home health, amidst a global pandemic in rural areas, is mediocre at best. Rejoining Radicava Ridiculousness through an oral form is a Godsend for all parties involved. This is only one of many benefits of access to therapies and the impact on the quality of life. Having these different medications as options takes us from a terminal diagnosis to that of a chronic one, which seems like a reasonable and realistic outcome. I truly hope that for my own story, the stories of the women I am in a group with, and for all the countless unique people with ALS in the US, that our access to these medications wont be hampered by this review.
I leave you today with lyrics from Queen:
“My soul is painted like the wings of butterflies, fairy tales of yesterday, grow but never die. I can fly, my friends The show must go on.”
Thank you for your time