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A Waiting Game

As I mentioned before, I am a 27-year-old living with Spinal Muscular Atrophy (SMA), Type 3. I consider myself really lucky looking at all the things I am able to do compared to all the things other people with the same disease as me are unable to do. I also consider myself really lucky compared to the things the doctors said I should not be able to do, like walk with extremely weak legs. Well, here I am, still walking and still able to jump. I guess I showed them. I work out too. Working out and stretching are some of the most important things for me to do in order to keep my strength up so that I can keep walking. I hope I am able to continue to walk forever! With that being said, the FDA did approve a treatment in December 2016 for SMA. This treatment is a drug known as Spinraza.

Spinraza is intravenously contracted into the spine through a lumbar puncture. Basically, the same procedure as an epidural for pregnancy. It was announced with a starting cost of $750,000 dollars for the first year, and $350,000 annually after that. I started the process with my insurance in January of 2017 and went through a constant battle waiting for any decision from insurances. I was working at Target as their Beauty Brand Team Member, but when I left in April of 2017, my insurance changed. At that time, the insurance I had said they would not come out with a policy for Spinraza until April. I then had to wait for the waiting period to end with my new job before I could get on their insurance in August. It wasn’t until September 2017, that I found out if my insurance would cover the loss or not. Again, I will go into more detail about insurance and the approval of Spinraza in a future article.

While I was waiting for my insurance to figure things out, I had a hard time seeing so many other people doing so well with the medication while I was just waiting. Like I said before, I am lucky that I have a lot of the abilities I still do. Several other people, even with the same type of SMA as me, have lost the ability to walk and climb stairs. I'm sure a lot of other people with SMA went through this as well or are still going through, which is one of the reasons I wanted to talk about it. I want everyone to know that they are not alone in whatever they are going through, even though sometimes it may seem that the world is crashing down on you. If you search long and hard enough, you will be able to find someone in a similar situation.

My hope is that one day all insurances will approve Spinraza for all SMA patients. I have talked to a lot of people in similar situations as me, that their neurologist is unwilling to even consider the option because they are doing too well. I am someone that is extremely high functioning with SMA and if I had a different medical team, I most likely would be in the same category of not having access before I am doing too well. However, SMA is a ruthless disease with an unpredictability. No one can tell you how you will be doing in five years, because there are so many different factors that contribute to the functionality. If there is one message I can give to other people with SMA, I would say do not give up on hope if you are trying to gain access to treatment. Keep fighting, because this is the only approved treatment for SMA, and this is essentially your life you are fighting for. 

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