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    • #25602
      Shinji78
      Participant

      Hi all

      My first time using this forum 🙂

      My partner is type III and still able to walk. No long distances, no steep walkways, but walk.

      A couple of years ago we were informed by her neurologist about a potential treatment named ‘Spinraza’. She told us it was under revision and waiting to be approved in the UK. Then it had to be reviewed by the Scottish Medicines Consortium and, if approved, she could possibly be endorsed for the medicine and stop the progress of her illness.

      The year after, she went through all types of testing for heart, lungs, spine, nerves, etc. Every doctor we saw told us she was in good condition and they saw no problems to go ahead with Spinraza. That took one entire year and by then Spinraza was already approved and it was already being supplied to children affected with Type I in Scotland.

      This year, with the Covid 19 breakout we didn’t hear for any news about Spinraza for months.

      Now, early december she have had her annual appointment with her neurologist hoping to get some good news about progress. I always go with her but this year I wasn’t allowed.

      She was informed that Spinraza has finally not been approved for adults in Scotland due to a negative evaluation cost vs benefits.

      It is being supplied in England, Wales, Germany, Spain, USA, no problems, but not here. After all the tests, the hopes… We were so close and suddenly, some money makers evaluating people as numbers, decided to break our dream.

      I can’t describe in words the deep disappointment she came out with from that neurologist visit.

      Spinraza has now cut its cost due to other medicines being evaluated and offering competency, yet, she has no offered any treatment and won’t probably get any being almost 35yo and type III.

      All we were told is to keep waiting for next medicine, next evaluation cycle, next few years, next this, next that.

      SMA is a slow countdown and every day she wakes up is one day closer to a life time in a wheelchair. Her job, our home, our lives… many things will change when that happens. Yet here we are, not doing nothing but waiting.

      It is unfair allowing people to dream with hopes and when is so close wipe it out like if it never existed.

      I know there are people suffering this illness in a worse condition than my partner and I really hope these people gets a treatment and improves their quality of life. Same goes for all the children for which Spinraza is saving their lives. I am glad families has found the hope they deserve, but this message aims to any of these cost vs benefit decision makers in case by coincidence ever read this.

      They can not do this to people. This illness won’t wait for you to decide how costly is to grant someone’s life quality and independency.

    • #25605
      Alyssa Silva
      Keymaster

      Oh I am so sorry you and your partner are going through this. This narrative is too common in the SMA community. I wish I had better answers for you. Traveling is tough right now due to the pandemic, but when things settle down, is traveling to England an option so she could get the treatment? I’m not sure what it’s like in Europe, but here in the States, we have foreigners traveling here to receive treatment. Anytime you and/or your partner need to vent we are always here for you. Sending you well wishes.

    • #25610
      Shinji78
      Participant

      Thanks Alyssa.

      Too bad same story repeats over and over again to many people.

      Thanks for your words

    • #25611
      DeAnn R
      Keymaster

      My heart goes out to you guys. I wish I could wave a magic wand so everyone could get treatment that wants it. If I had a magic wand though SMA wouldn’t exist. Although I didn’t have to wait nearly as long as you, I remember the thoughts that ran through my mind about disease progression and what the drug would do for me. Please try not to dwell on that. Expectations can be higher than results sometimes. My advice is to keep fighting for treatment and try to maintain her abilities by physical therapy and/or occupational therapy so when treatment does become available, and I have confidence it will, that the medicine will be the most effective it can be. Hugs to you both.

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