My Spinraza Journey

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.

13 comments

  1. Dennis says:

    Can you elaborate more on what you said “… Biogen is willing to give patients the drug for free after two insurance denials.”

    I too have been on an emotional roller-coaster follow the announcement of this treatment.

    Looking forward to hearing more on your experiences.

    • Ryan Berhar says:

      That is just Biogen’s policy. If you still don’t have access to Spinraza after two insurance denials, then bug your Biogen rep about it. Thanks and good luck!

  2. FRS says:

    Ask your hospital interventional radiologists if they have experience with transforaminal access, a few centers have had a lot of success with it. Good luck!

    • Larry says:

      My son is 18 with SMA 2 and spinal fusion, Interventional Radiology is able to go in from the side to inject spinraza, he just received his 5th shot today…still no noticeable results though. Good luck on your journey. We live in Yakima, Wa. and have to travel to Seattle for his shots. it was pitch black at 6am when we crossed the pass plus a white out blizzard..not a fun trip.

  3. Andrew says:

    Hello!

    I wanted to mention something in response to drawing blood. I have SMA also and drawing blood from usual locations has been an impossible task as well. However, one of my nurses has discovered a location where blood flows freely! In my case drawing blood from my hand just above my knuckles has been totally pain free and the blood vials get filled very fast. Drawing blood by my elbow has been an entirely futile effort. Just wanted to let you know!

  4. Ellyn Kearney says:

    Thanks for sharing your story! Like you, I have a solid fusion but have quite easily received the 4 loading doses via the neural foramen. Many doctors have been unwilling to educate patients about this method, even though it involves extremely low risk. Fight to get your care your way!

    • Ryan Berhar says:

      I am aware of the option, and I’d be willing to consider it, but my doctors are unwilling to deviate from protocol. Now I would fight for it if I thought it was the best option, but I’m uncomfortable not only going against doctor recommendations, but also being a guinea pig.

  5. Jo Johnson says:

    I am going through the same obstacles with my daughter who has SMA. She has seen all her doctors to clear her for treatments and insurance has denied her twice. Still, no loading dose schedule and no word from her doctor as to what is going on. Soooooooooooo frustrating!!!!

    • Ryan Berhar says:

      After two insurance denials Biogen will give her the drug for free. There are other procedural costs, but that’s the first thing to take care of. The only suggestion I have is to get on your Biogen rep about it. Good luck!

  6. DeAnn Runge says:

    Thanks for sharing and best of luck on your journey. I can relate to a lot of what you said, from being a tough stick to the spine fusion dilemma. Going through the neural foramen has worked slick for me with no surgery or sedation required. Hope you find the solution you and your docs are comfortable with.

  7. Charles says:

    I had a similar thing happen where they were not able to give me the injection because of fusion. I got the surgery to drill a hole and was able to get one injection before something in my spine grew back over the spot they drilled (I don’t know how to explain it as it was not explained to me very well) I recently got an ommaya port as an easier way to get the injection because the spot was covered up. If you are still contemplating surgery to drill a hole I would recommend getting the ommaya port as it would mean there is no possibility of the hole getting covered back up.

    PS If you do this see if they can give you your first injection during your surgery for the port

    Best of luck, Charles

    • Ryan Berhar says:

      Interesting. I am a bit uncomfortable with a port because it has a higher risk of infection. I looked up ommaya port and it looks like it goes into your brain. Is this how yours is? Thanks.

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