The Journey: Part I
A few months ago I found out for the first time that a drug had been approved by the FDA in December of 2016 to stop the progression of my disability – Spinal Muscular Atrophy. This drug, Spinraza, was something I’d dreamed about my whole life. I found it by chance (you can read about it HERE) and immediately contacted my primary doctor for a referral to a new neurologist. I knew it’d be a long road. My research showed story after story of insurance’s denials, but some people were approved so I had hope.
August 1st I found out about Spinraza. August 1st I requested a referral from my primary to a neurologist. August 1st a referral was sent. After a few months of repeated phone calls and them not allowing me to switch neurologists because I was already established with one (whom knew nothing about my disability), I got discarded. December 8th I got told to get a different referral – to a clinic that I knew at this time was not doing anything with Spinraza.
Maybe this is a sign. I don’t have a miserable life, maybe I’m not meant to get treatment. Maybe there are others who need it more than me. Maybe I should give up.
During my time of waiting to get in with a neurologist, I researched. I watched videos about people showing improvements in muscle movements. I read stories about kids who had lost the ability to roll over in bed now able to roll and sit up on their own. I watched doctors talk about seeing patients quality of life get better. I wanted it so bad. I wanted to be able to shake someones hand without that awkward moment of “I can’t reach any further.” I wanted to be able to write a handwritten letter without my wrists and fingers being exhausted. I wanted to not get a full work out just from lifting to drink out of a water bottle. That very first day I said I didn’t have high expectations – I knew I wouldn’t walk again – but, my goal was to be able to put my hair up in a ponytail by myself. (Although, I must say my husband has become a pretty amazing hair-putter-upper!)
I found a story online about a woman named Tammi. The article was about her journey navigating insurance and her finally being approved. She had her first dosing of Spinraza in August. Then, I read that she lived just a few minutes from me. Needless to say I stalked her out on Facebook and wrote her a message with 1,001 questions. She, thankfully, was super nice and open to answer all the questions I had. We eventually met at Starbucks and talked for over 2 hours and I can’t even explain how I felt when I left.
In all of my 31 years, I’ve very rarely researched my disability. I didn’t want to know when I might die or how weak I would eventually get or have to live in fear of knowing what was going to happen to me. I wanted to just be normal. Be a kid, go to college, get a job (ha, wouldn’t that be nice). In college I spoke to a class about my disability and that was the first time I realized how weird it was that I didn’t know much. I went to the internet, searched SMA and read that I should either already be dead or it shouldn’t have onset as early as it did. Um, no thanks to that information – being oblivious to the reality was so much easier.
After meeting Tammi, I was invited to a very elite (ok, you just have to be one of us cripples to join :)) Facebook group. This group has opened my eyes to a whole new side of SMA that I’ve never seen. So many relatable topics that I didn’t know were because of my diagnosis. Of course some of it’s scary, but I’ve learned so much.
The Journey: Part II
Tammi invited me to a dinner hosted by Biogen to learn more about those who have received treatment and those still trying to get approved. I was so grateful to be invited, but had no idea all the information I would learn. A doctor from southern California who has administered Spinraza to around 40 patients was there to share and answer questions. I was able to get contact information for someone to help me fight when I feel like giving up. I got the name of a doctor to get referred to that is informed about not only my disability, but about this treatment as well.
Spinraza is not a cure-all answer to my disability. Although insurance companies want measurable improvement and there is a threat of not continuing coverage if no improvements are shown, I learned that doctors are trying to change the way Spinraza is looked at by insurance. Its original approval was based on it stopping the progression of SMA – the fact that some patients are seeing improvements was actually a welcomed surprise.
It was kind of information overload at this presentation, but for the first time since August I have that little bit of hope back. The journey begins again!
Also, if you’re in the market for some life-changing cheesecake, visit the Hilton. (But, I’d pass on the ravioli.)