My Spinraza Journey

Spinraza. This word elicits a different emotion for each person. Much like SMA itself, everyone’s experience with this medical treatment is different. For some, it has been life-changing in a good way; for others, in a not-so-good way due to suffering caused by the risks associated with it. Others are still waiting their turn. My Spinraza journey has had its moments of elation, but, for the most part, it has been a big frustration.

For about 20 years, I lived with no hope of a cure or treatment. Throughout my childhood, I heard about how close it was, only to be let down time and time again. I eventually became numb to the idea, disregarding whatever I heard about it. “I’ll believe it when I see it” was the mindset I developed. I figured I would simply have to live the rest of my life with SMA and all its implications. I even managed to come to a place of contentment about it. But then Spinraza changed everything.

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The first-ever treatment for my disease was finally here! As you can imagine, I was a bit skeptical at first. Was this real? Would I actually benefit from it? When I began seeing stories of people receiving treatment, it became real for me. I finally had hope, because I could see it happening.

My quest began on Feb. 14, 2017. It’s an easy day to remember because it was Valentine’s Day. I took a trip to Portland to meet with my neurologist. For me, the nearest dosing hospital is a three-hour drive over a mountain pass, which isn’t exactly convenient with winter snows. I was encouraged by the appointment. My doctor seemed optimistic that I would receive treatment shortly. But, of course, it just couldn’t be that easy.

The first obstacle was a series of unproductive blood draws to obtain the necessary DNA information to proceed. I was poked several times on three occasions. Over a month, I went to a local clinic, then a hospital, followed by a phlebotomist being sent to my home. Each attempt failed, because as everyone with SMA knows, getting blood out of us is more difficult than driving a wheelchair up a flight of stairs. While being a human pincushion is something I have grown accustomed to, it’s not enjoyable — especially when it’s unnecessary. That’s right. I was then informed that the needed information could be acquired through a saliva sample.

Seriously? They couldn’t have told me that in the first place?

The battle with insurance companies was predictably a nightmare as well. I could write an entire column about that, but I’ll spare you. The good news is Biogen is willing to give patients the drug for free after two insurance denials. But the bad news (you knew it was coming) is that the process was unnecessarily delayed by the incompetence of a no-longer-employed hospital nurse who was in charge of my case. Phone calls were not returned. I was left in the dark. This nearly doubled the wait time.

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This was when the frustration hit me the hardest. Seven months with little-to-no progress was discouraging. All the success stories that once brought me hope became difficult to process because it seemed unattainable for me. I would scroll past them on Facebook. That’s not to say that I’m not happy for those receiving treatment. I genuinely am. But when month after month rolls by with zero progress, hopelessness can set in. I started wondering if the whole darn thing is even worth it.

Then, in November, I finally received my hope-renewing dosing schedule! Four loading doses in December and January. But my excitement was short-lived. Now it is December, and it has been postponed upon discovering that there is no access to my spinal fluid due to my fusion. I have the option of surgically drilling a hole as an access point, but I’m currently unsure about my desire to go through with the procedure. Surgery comes with its own potential complications.

And so my Spinraza journey begins. Stay tuned for updates down the winding road.

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Note: SMA News Today 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 provider 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 SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.