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This topic has 4 replies, 4 voices, and was last updated 3 months, 3 weeks ago by Tyler Dukes.

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    • #24478
      DeAnn R
      Keymaster

      The day we’ve been anticipating is finally here! Risdiplam has been FDA approved and looks to have a broad label. Of course it has a new name that I have no idea how to pronounce, Evrysdi. You can read more about it here. Not sure of the pricetag as of yet. In my lifetime, I never anticipated there’d be three treatments for SMA.

      What are your thoughts and feelings? What questions do you have?

      NOTE: If you comment on this post, we’d like to publish your thoughts in a reaction story on our main website. When you comment, please leave your first and last name, and a brief message giving us permission to use your quote. Thanks everyone!

    • #24481
      Lupa F
      Participant

      Risdiplam was already awkward so they must have held a contest to see if they could make an even worse name and Evrysdi won. That’s the only thought I have for now. I just did my latest Spinraza dose a month ago so I have time before I really need to think about switching.

    • #24482
      Kelly Miller
      Participant

      I’m so excited, I can hardly wait for the two weeks until they actually get the med out! I didn’t want to do Spinraza b/c of the whole having to get injections in my spine, not to mention my fear of possible side effects. Ever since I first heard they were investigating a possible drug that would be taken orally or thru a g-tube, I’ve been devouring any news even remotely related to SMA. I’ll be calling my neurologist’s office Monday to schedule an appt for 2 weeks from now, and then I’ll be 1st in line at my pharmacy as soon as the medication is made available!

       

      I totally agree with Lupa about the name, Evrysdi. The names have gotten more difficult to pronounce from Spinraza on. I sure hope the powers that be will tell us how to say it since we’ll be the best people to, not only educate others, but also to promote the med when we start taking it..

    • #24483
      Lupa F
      Participant

      I didn’t see it listed anywhere on this site, but the price is $340,000 a year for adults. These prices are such a joke. It’s actually cheaper for babies than adults which is the exact opposite of how it should be priced (it scales based on weight up to 44 pounds). Spinraza’s justification for its price was that it offset the hospital costs of babies with type 1/2 that require a lot of hospitalization. Adults with SMA I don’t think have nearly the same hospital costs (I’ve never spent a day in the hospital) so having it priced higher for adults is just gouging the system, again. Not that I expected much different.

      • This reply was modified 3 months, 3 weeks ago by Lupa F.
    • #24487
      Tyler Dukes
      Participant

      To go from zero available treatments to three FDA approved treatments in roughly three-and-a-half years is astounding! It just feels as there’s this momentum building towards a cure, and Evrysdi is the next domino to fall.  The ability to have at-home treatment is a gamer changer. The science is done.  We can now focus our collective energy onto insurance. Then… the truly hard part… the decision! I personally can’t wait to get here.

       

      Tyler Dukes

      *You may use my post for quotes

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