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This topic has 6 replies, 4 voices, and was last updated 1 week, 4 days ago by Adam.

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    • #26617
      Adam
      Participant

      Australia has recommended Risidiplam for patients with SMA 1, 2 & 3 … if they’re under 18.

      That means it’ll be massively subsidised and therefore affordable.

      They did the same with Spinraza.

      I’m happy as a pig in shit for the young ones but I’m 35 & a rotten mix of absolutely fucking furious, disappointed & worth less (not “worthless” but worth less than others – if I paraglyded into a cliff tomorrow they’d spend 100’s of 1000’s of $$$ to rescue me off a cliff my dumb arse crashed into).

      I guess they’ll try again next year but as we know a lot can be lost in a year.

      Total kick in the guts.

    • #26620
      Alyssa Silva
      Keymaster

      Ugh so sorry to hear that Adam. Wish there was a solution for you, but know that you’re free to vent here anytime. I remember feeling your frustrations a few years ago.

      • #26626
        Adam
        Participant

        Thanks Alyssa. TBH here’s the only place I vent that stuff & feel anyone has any idea what I’m saying. This news dropped 2 days into having my best mate travel 2000kms to come spend a boys week full of beer & fun & it pissed me off extra for putting a downer on me. Can sorta tell him but at the same time I hate to put my shit on anyone else – had to fake a sore back today just to go sit in the dark by myself & shut the world off for an hour to reset.

    • #26621
      DeAnn R
      Keymaster

      Doesn’t it make you want to punch a hole through the wall? Except you can’t because they won’t give you the medication. It’s ridiculous that they come up with this arbitrary number that just discounts a whole segment of the population that could benefit. You said it was the same for Spinraza. Have they broadened the scope for it yet?

      If it’s any consolation I don’t feel Evrysdi is all it’s cracked up to be. At least for me. Of course that being said I think everyone should get the opportunity to try it for themselves. Keep fighting for it. I know it sucks, but your struggles might make it easier for the next person.

      • #26627
        Adam
        Participant

        Cheers DeAnn. Absolutely! My god I miss being able to clench a proper fist let alone the strength to throw it at a wall.

        It’s beyond ridiculous. Like do we lose a key ingredient to being worth help after our 18th bday?

        Spinraza is still the same.

        That does make me feel better a bit & yeah I’m resigned to be a thorn in their sides for which I’ll never reap rewards myself but hopefully its easier for the next person as a result.

        In hindsight if I knew this decision was coming I shoulda defrauded the disability insurance scheme for years to fund my own treatment. What they gonna do, jail me? lol

    • #26643
      oluwaseun
      Participant

      The way you guys reacted to Adam’s comment has really given a huge boost to my confidence. I am new here and most people around you physically don’t really get the depth of what ever you say or feel physically, because it is not them in the first place.

      I know on my low days I can always speak or vent and people here will understand.

      Adam, people like you give us the tug to continue to push even beyond hope. I know there will be soup for you but maybe not in the ways we expect.

      Thanks.

      • #26663
        Adam
        Participant

        You’re not wrong, mate. Great community here.

        Minestrone please lol

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