Every Setback is a Setup for a Comeback

I try my best to always stay positive and I’m really trying my hardest right now, but it’s tough. Our healthcare system in the USA, when it comes to receiving medication, sucks. On the morning of my 31st birthday, I was told by my neurologist that they had received my first official denial from my insurance company to receive Spinraza(the first ever treatment for SMA). Today, I received the letter in the mail. It wasn’t a surprise, but my heart still sunk. I’ve waited 30 years for a treatment to become available. Now that it is, I have no idea how long it’ll be until I receive it and all I can do is wait. The problem is that the FDA approved this treatment for all types, when on paper, through the clinical trials, they had the official documentation that it works for Type 1. So, you would think everyone with Type 1 would receive it within a week after the approval, right? No, lives were still lost because of protocols, insurance coverage and all of the other by the book bullshit. What’s wrong with humanity? There’s a drug that will help people live, give people a better quality of life, just give it already. Keep dreaming I guess. Also, it’s priced way too high. $125,000 an injection and you need 6 doses in the first year. Every year that follows after, 3 doses. So, insurance companies aren’t going to put out that kind of money when they don’t have the on paper, official documentation, that they need. Now that I vented and got my frustrations out, I will say what I’m grateful for.

There are insurance companies that are approving for all types and for those who are getting approved, I am so beyond happy for. Especially my cousin!!! Who gets his first injection this week. I am so excited to see what this does for him. Like I said to him, Cousins Cruisin’, halfway there! The videos that I’m seeing posted in the Spinraza group, blow my mind. It’s truly a blessing to get to see a treatment make people stronger, achieve milestones that would be impossible otherwise and to see it working for all types. I just wish it was available for all.

I would say this year has definitely tested my patience. Sometimes I just want to scream, but I hang in there, keeping in mind that even though I haven’t received the treatment yet, I’m lucky. Lucky just because of the fact that there is a treatment to be waiting for. More importantly, lucky because I have the best support system, while I wait. I’m lucky to have an amazing neurologist who emailed me right away that he was already working on an appeal letter. If I get denied a second time, I start the screening process to receive the treatment through Biogen. That’s what I’m being told. Every setback is a setup for a comeback. My time will come. Thanks for reading and as always, thank you for your support.