SMA News Forums Forums Treatments and Research Spinraza (nusinersen) Frustrations with Spinraza Protocols

  • Frustrations with Spinraza Protocols

    Posted by deann-r on June 4, 2019 at 10:59 am

    I know I should be nothing but grateful for just the opportunity to receive Spinraza, so I’m hesitant to complain about anything regarding it. Yes, there’s a but, I just received a letter from the facility that’s going to complicate the process for me. First of all the person who coordinated the scheduling left, so it appears more of that will fall on me. There’s a whole paragraph about scheduling labs. Plus I’m not familiar with the area, so I’ll have to study up on the lab locations in relation to the building where I get my injection. Not to mention the pregnancy blood test is now being required the day of the injection so it’s pointless to have my other labs done locally prior if I still need blood drawn the day of. Of course that adds anxiety because what if they can’t get my blood the day of?

    Next issue, which should be a good thing but complicates things even further, is that physician and pt evals are going to be every 6 months. For me they have June and December earmarked. Fine and dandy except my injections are July November and March. That’s two extra trips, and it’s not just right down the road. I’ve already had transportation issues so two more trips is not something I’m looking forward to.

    I know these aren’t major issues, and I’m lucky everything has gone as smoothly as it has. It’s just frustrating that instead of getting easier it’s getting more complicated. Do you guys have a streamlined process? How much scheduling etc. do you have to do?

    halsey-blocher replied 4 years, 11 months ago 6 Members · 12 Replies
  • 12 Replies
  • ryan-berhar

    Member
    June 4, 2019 at 8:49 pm

    I’m not on Spinraza, but yeah, that’s the difficult part about it. It’s literally a life-long endeavor (unless other treatments are approved). It’s a logistical nightmare for most of us.

    • deann-r

      Member
      June 11, 2019 at 10:36 am

      “Logistical nightmare” sums it up perfectly.

      • ryan-berhar

        Member
        June 11, 2019 at 5:02 pm

        Glad I could crystalize this for everyone. Lol

  • halsey-blocher

    Member
    June 4, 2019 at 9:45 pm

    That’s an absurd amount of extra work. Before I found out that I wouldn’t be able to receive Spinraza, I went through the whole process and it was not that complicated. I got my labs at my GP’s office and they sent the results to the hospital that was going to administer it. The PT eval was the same day as the injection. What on earth is the pregnancy test for, and why can’t they just do it at the same time as the rest of the labs? Or why can’t they just have you sign something saying that your not pregnant? That’s all way more work than necessary. I hope you get it all figured out.

    • deann-r

      Member
      June 11, 2019 at 10:19 am

      Halsey, the reason for the pregnancy test is because of my spinal fusion I get the injection with CT guidance and that uses radiation. The last couple times they allowed me to refuse, but sounds like that won’t be an option any longer. I’ve been able to do labs at my local clinic and probably still can, but that’ll make an extra blood draw since they’re requiring the pregnancy test the day of. Let’s just say if I was pregnant it’d be a miraculous conception. Ugh. They have to go and complicate things. Dumb to change the PT eval to every 6 months too. I was doing it the same day which made for a long day, but it was so nice to just get it all done in a day.

      • halsey-blocher

        Member
        June 11, 2019 at 9:43 pm

        I can understand why they want a pregnancy test, but I think it would so much easier to have you sign a waiver or something less complicated.

  • francesca-arcadu

    Member
    June 5, 2019 at 5:08 am

    Oh, finally I read other people saying what I think. ” Logistical nightmare for most of us” is the best definition about all the protocols and difficulties in Spinraza treatment. I live in Sardinia (Italy), and my city is 250km far from the hospital, and we dont’t have good roads. So for me it would be really a nightmare go to the hospital, stay in hotel for 2/3 nights every time and for every infusion. I really hope Roche treatment and gene therapy will be available for adults because we can’t endure other fatigue in our life, and our caregivers too…

    • deann-r

      Member
      June 11, 2019 at 10:24 am

      “Logistical nightmare” sums it up nicely. Like I said I’m grateful to have the opportunity to get Spinraza, but needless to say I’ll be jumping ship when something easier comes along.

  • kevin-schaefer

    Member
    June 5, 2019 at 12:07 pm

    It can definitely be a hassle, so feel free to vent. Do you have a Biogen Family Access Manager who you can contact about scheduling? I’m fortunate to have a really good one, and I was just wondering if you had someone you could contact. If your previous one left, they should hopefully have a replacement.

    • deann-r

      Member
      June 11, 2019 at 10:05 am

      I opted not to get a FAM from the start because it felt like too many cooks in the kitchen sort of speak. They don’t coordinate the appointments though do they? It’s beyond frustrating. I’ve already made 3 calls and have yet to talk to a person.

  • losmi

    Member
    June 10, 2019 at 8:22 am

    I have no access to Spinraza and it is not likely that I will have it any time soon, so these are all new information for me – surprisingly unfortunate information. For the amount they are charging for Spinraza they should organize a charter helicopter to each and every patient.

    • deann-r

      Member
      June 11, 2019 at 10:29 am

      Ha,ha, the helicopter would be the cheapest part! Hopefully it’s not that complicated for everyone, but I wanted to be honest about the difficulties I’ve experienced.

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