• No soup for me.

    Posted by adam on April 26, 2021 at 3:25 pm

    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.

    adam replied 2 years, 11 months ago 4 Members · 6 Replies
  • 6 Replies
  • alyssa-silva

    Member
    April 26, 2021 at 5:31 pm

    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.

    • adam

      Member
      April 27, 2021 at 6:37 pm

      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.

  • deann-r

    Member
    April 27, 2021 at 8:35 am

    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.

    • adam

      Member
      April 27, 2021 at 6:54 pm

      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

  • oluwaseun

    Member
    April 28, 2021 at 11:53 pm

    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.

    • adam

      Member
      May 2, 2021 at 9:16 am

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

      Minestrone please lol

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