SMA News Forums Forums Our Community Adults ​With​ ​SMA Podcast #11 – smajourney51

  • Podcast #11 – smajourney51

    Posted by michael-morale on July 19, 2018 at 12:19 pm

    Podcast #11    In this podcast, I’m going to answer a couple questions that my subscribers have sent me through my YouTube channel or my email account. The first question that I answer involves whether or not I think the frustrations that I went through while getting approval to begin my Spinraza treatments was worth it. The second question that I answer involves whether or not I have noticed any changes to my physical strength and conditioning after beginning my treatment’s. These two questions were asked by multiple subscribers, and I felt doing a podcast would be the best way for me to share my responses to these very important questions with everyone. Please be sure to listen to the end of the podcast, because I explained in great detail as to the reasons why Biogen Pharmaceuticals mean so much to me. Their commitment that they have shown me, is the reasons why I am able to go through this life-changing treatment.

    michael-morale replied 5 years, 8 months ago 3 Members · 4 Replies
  • 4 Replies
  • kevin-schaefer

    Member
    July 20, 2018 at 11:48 am

    Great podcast Michael. I also have experienced stronger breathing and improved speech since starting Spinraza. I really went in just wanting to stop the progression of my SMA, so the abilities that I’ve gotten back have been sort of like a bonus.

  • michael-morale

    Member
    July 20, 2018 at 3:19 pm

    I think many of us are seeing extra benefits.

  • deann-r

    Member
    July 20, 2018 at 9:54 pm

    I think the questions you addressed are questions many individuals have.  It’s so individual, but I too feel the struggle to get Spinraza has been worth the frustration.  What I grapple with is when I think about the cost vs. value.  My improvements have been so subtle is it worth $125,000 per injection?  After considering what goes into creating the drug, getting it FDA approved, the limited market and the fact Biogen has the free drug program I’m okay with it.  Not to mention I feel better than I have in years.  Of course I wish everyone had access to it.  Another caution I hope people are aware of is that I don’t want anyone to be let down after a long hard struggle to get the drug when it’s not the miracle cure they may be thinking it is.  Yes, I consider it a miracle, however it’s main purpose is halting progression.  Hope that makes sense.  I’m glad you’ve shared your progress.

  • michael-morale

    Member
    July 21, 2018 at 11:20 am

    I couldn’t agree more DeAnn, Spinraza is not a cure, it’s a treatment.

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