SMA News Forums Forums Treatments and Research Evrysdi (risdiplam) What are your Thoughts on Evrysdi (risdiplam)?

  • What are your Thoughts on Evrysdi (risdiplam)?

    Posted by kevin-schaefer on August 14, 2020 at 9:00 am

    On Friday, August 7th, the FDA announced the approval of Evrysdi (Risdiplam), the first oral treatment for all types of SMA. Bionews frequently launches surveys to gauge the thoughts of community members. Your perspective may help better inform and improve how the medical industry treats people with SMA. Should this survey yield valuable insights, the results will be shared with the SMA community. This survey will take 2-3 minutes to complete. Your insights are appreciated.

    Click here to take the survey

    chantell-venter replied 3 years, 10 months ago 2 Members · 1 Reply
  • 1 Reply
  • chantell-venter

    August 14, 2020 at 9:26 am

    I realize that the research costs a lot of money but the price of Evrysdi is going to make it really difficult for many to afford this breakthrough treatment.

    I stay in South Africa and except that it is not available here yet I would never be able to afford it.

    Currently in South Africa our medical aid companies see SMA as ‘another genetic disorder’ and does not classify it under muscular dystrophy as the US and Britain does. This means it does not get funded under prescribed minimum benefits but rather comes off from my medical savings plan. Any treatment like physio or assistive devices like wheelchairs also comes off from the savings plan. It’s quite ridiculous actually.

    I personally don’t think, and I sincerely hope I’m wrong, that our medical aid companies will cover a lot of the cost leaving many like myself and my sister who both have SMA3 out in the cold.

Log in to reply.