SMA News Forums Forums Treatments and Research Evrysdi (risdiplam) It’s Approved! Risdiplam now Evrysdi

  • It’s Approved! Risdiplam now Evrysdi

    Posted by deann-r on August 7, 2020 at 3:46 pm

    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?

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    tyler-dukes replied 3 years, 1 month ago 4 Members · 4 Replies
  • 4 Replies
  • lupa-f

    Member
    August 7, 2020 at 4:20 pm

    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.

  • kelly-miller

    Member
    August 7, 2020 at 8:30 pm

    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..

  • lupa-f

    Member
    August 9, 2020 at 12:25 am

    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.

  • tyler-dukes

    Member
    August 9, 2020 at 7:18 pm

    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

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