yume
trying my best
- Apr 2, 2023
- 14
Heyo, I'm new here, and to forums in general, so I'd appreciate any pointers on etiquette and the like.
I'm recently out of high school, and suffer from spinal muscular atrophy type 3, a degenerative neuromuscular disease (for those who wouldn't care to look it up, the gist is that my muscles get weaker over time), putting me in a wheelchair for the last ~5 years. This had already been weighing on me, I no longer looked forward to getting older and enjoying my freedom, since I could no longer do any of the things I enjoyed, and feel like a burden to everyone who'd be willing to spend time with me, but I came to terms with it, at the very least I wouldn't be getting any worse thanks to getting treatment, and I can still maintain most of my independence.
Recently, however, I've aged out of the state run program that was funding my treatment. The medicine I take is called Spinraza, it costs roughly $200,000 per dose, of which I need every 4 months. Now that the state is no longer paying for it, my insurance provider has started denying the medicine, under the reasoning that it "isn't medically necessary." They have denied all appeals so far, and it doesn't look like things are going to work out. While it is true that I won't die from my disease, I will likely lose almost all motor function given enough time. I don't want to lose what independence I have left, I don't want to be a burden to whoever would be stuck taking care of me, but neither I nor my family have the means to pay for my treatment. I think, if I start getting worse again, I'd like to CTB to avoid putting the burden of supporting me on anyone else, since I don't think I have much to look forward to either way.
Anyways, thanks for reading my spiel, I'll hang around here for a while so if anyone has any advice or anything, it's all appreciated.
I'm recently out of high school, and suffer from spinal muscular atrophy type 3, a degenerative neuromuscular disease (for those who wouldn't care to look it up, the gist is that my muscles get weaker over time), putting me in a wheelchair for the last ~5 years. This had already been weighing on me, I no longer looked forward to getting older and enjoying my freedom, since I could no longer do any of the things I enjoyed, and feel like a burden to everyone who'd be willing to spend time with me, but I came to terms with it, at the very least I wouldn't be getting any worse thanks to getting treatment, and I can still maintain most of my independence.
Recently, however, I've aged out of the state run program that was funding my treatment. The medicine I take is called Spinraza, it costs roughly $200,000 per dose, of which I need every 4 months. Now that the state is no longer paying for it, my insurance provider has started denying the medicine, under the reasoning that it "isn't medically necessary." They have denied all appeals so far, and it doesn't look like things are going to work out. While it is true that I won't die from my disease, I will likely lose almost all motor function given enough time. I don't want to lose what independence I have left, I don't want to be a burden to whoever would be stuck taking care of me, but neither I nor my family have the means to pay for my treatment. I think, if I start getting worse again, I'd like to CTB to avoid putting the burden of supporting me on anyone else, since I don't think I have much to look forward to either way.
Anyways, thanks for reading my spiel, I'll hang around here for a while so if anyone has any advice or anything, it's all appreciated.
