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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.


This topic has 7 replies, 4 voices, and was last updated 6 months, 1 week ago by Mike Huddleston.

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    • #21442
      DeAnn R
      Keymaster

      As an adult with SMA currently on Spinraza do you think there is anything we can do now to make getting on risdiplam easier if/when it’s approved? Currently I’m on Medicare/Medicaid in MN.  Besides that I believe Silverscript is my Medicare drug plan.  I see my neurologist in a couple weeks.  Any questions to ask him?  My main concern is how to get it covered by my drug plan.  In addition to that, will pharmacies carry it? I know time will tell, just figured I’d ask your thoughts.

    • #21485
      Kelly Miller
      Participant

      I’m so glad you brought this up DeAnn because I have an appt also with my new neurologist here in Florida on Dec. 10. Like you, I have Medicare as my primary insurance, but mine is straight Medicare, no advantage plan. I also have Blue Cross Blue Shield from my former job as a Fed employee which covers what Medicare doesn’t pay & it covers all my drugs. Unlike you, I am not on Spinraza; in fact, I haven’t even had the genetic testing because they acted like idiots when I tried back in Texas. Since I wasn’t going to do Spinraza, and nothing else was in the pipeline at that time, I put the testing on the back burner. I really wasn’t interested in fighting with them when there was no reason for it then. Now, I need to get that going I’m sure. I’ve been thinking about what I need to ask the neurologist also when I go. Of course, I’ll have to do the testing thing. I know Biogen was offering it for free, but I don’t know if they do that when you aren’t getting Spinraza. Do you think Risdiplam people will also offer that kind of deal?

      I’m wondering if we will be able to just go to the pharmacy and pick up Risdiplam, or will they require us to take it in the doctor’s office to make sure we don’t have reactions? In that case, would they provide the drug itself for us? If they do, then it would be Medicare to pay for it because any drugs you get at the doctor are covered under Part B, whether you have a Medicare drug plan or private insurance. If we pick it up at the pharmacy, then that goes to our drug plans, either Medicare Part D or Medicaid or private. I’m kind of hoping they supply it in the doctor’s office because then we will all be dealing with regular Medicare, and the more of us who go thru the process, the easier it will be to become approved. You know what I mean?

      • #21515
        DeAnn R
        Keymaster

        You have good questions as well. I would think Roche (I believe is the company) would offer genetic testing, total speculation of course. Tbh, I don’t remember who covered mine. If I was in your place I’d seek that out as soon as possible.

        As Lupa said it is a daily medication, so I’m doubtful on the doctor administration, however I heard somewhere that the medicine has to be compounded so may only be available from specialty pharmacies. Of course I don’t know if that’s true or not.

    • #21492
      Lupa F
      Participant

      I highly doubt that you’ll be required to take it at the doctor’s office since it’s supposed to be taken daily. I’m sure your doctor likes you, but don’t think they want to see you 365 days a year.

    • #21499
      Kelly Miller
      Participant

      Thanks for bringing this up Lupa! I had gotten it confused with Zolgensma, so I was thinking it would be a one time deal. Hope I didn’t confuse anyone – except myself, lol.

    • #21501
      Mike Huddleston
      Participant

      Excellent topic.  I saw my neurologist at Hopkins just yesterday for my annual MD clinic visit, Dr. Charlotte Sumner. She mentioned both Risdiplam and Biogen’s study on increasing dosage amounts for Spinraza.  The expectation is that Risdiplam will be approved for all patient age groups and SMA types in the first few months of 2020.   It is daily as Lupa pointed out, but she also mentioned that it is unlikely that insurance companies would pay for both Spinraza and Risdiplam, as although prices for Risdiplam aren’t set, it will likely be rather expensive. Therefore, those of us treating with Spinraza will likely face a decision – continue with hopefully more effective increased dosage amounts of Spinraza or transition to Risdiplam.  How that would work seems to be TBD.  I honestly have heard about Risdiplam, but have been satisfied with Spinraza to date (had 4th maintenance dose in early October) and would have a difficult decision if Biogen opts for the increased dosage amounts.  Kind of hard to imagine a 20 pound child needs the same amount as a 200 pound adult.  And there is apparently some evidence suggesting/indicating that the 5 ML dose has limited “travel” distance within the spinal cord.

      So, I am faced with a difficult but good decision to have to make.  As I’ve seen significant muscle growth and strength gains with Spinraza in my quads, VMO, hip flexors, and anterior tib, I’m seeing some albeit less substantial improvements in the upper body.  Increased dosing of Spinraza or switching to Risdiplam. Obviously, a lot more education is needed by me and I will rely heavily on my neurologists based on their input on most effective protocol for me.

      • #21516
        DeAnn R
        Keymaster

        I’m thinking it’ll have to be one or the other as well. Who would have thought we’d have choices! Did your neurologist seem to be leaning one way or the other? I’m sure it’s so new they don’t have a lot of info yet either. Since it’s not even out yet you have plenty of time to think about it. Glad to hear Spinraza has been working well for you.

        • #21531
          Mike Huddleston
          Participant

          Thanks DeAnn.  Yes,it is amazing to me that this choice is even a possibility.  I’m 40 years in from my diagnosis and lost a brother with SMA back in 2004.  That we are here today and soon with Risdiplam is incomprehensible at times.

          I will not speak for her, but I got the feeling that there seems to be some indications or evidence that Risdiplam may be more broadly effective than the more specific targeting of Spinraza.  And admittedly, I am nearly completely uninformed regarding Risdiplam, but will be taking steps in the near future to remedy that lack of knowledge. 🙂

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