SMA News Forums Forums Treatments and Research Spinraza (nusinersen) Traveling for Spinraza Injections

  • Traveling for Spinraza Injections

    Posted by kevin-schaefer on September 26, 2018 at 11:00 am

    I’m fortunate that I only have to travel 30 minutes to the hospital for my injections, but I’ve talked to many other folks with SMA and families who travel hours or to other states for theirs. For some, their kids started the treatment while it was still in the clinical trial stage, and as such they have to travel to a hospital in another state. Others just don’t have any good options where they live, and as such go to a good hospital several hours away.

    For those of you who do travel for injections, how much preparation is required? What’s your process like? Do you stay overnight at the hospital?

    deann-r replied 5 years, 8 months ago 3 Members · 5 Replies
  • 5 Replies
  • michael-morale

    Member
    September 26, 2018 at 12:01 pm

    Like Kevin, I only have to travel about 10 miles to get my Spinraza injections. Many of the subscribers to my personal YouTube channel tell me that they have to travel over 100 miles each way to get their injections. One of my subscribers comes in with her family the night before and stays at a hotel. She gets up in the morning, goes into UT Southwestern Medical Center in Dallas Texas, and gets her injection and then they travel home after she’s had time to rest. This was a major concern for a lot of people when Biogen introduced their treatment. Injection sites were few and far between when they got started, but over the course of time, injection sites have popped up throughout the country giving people more options. I have heard that the average travel time for many of these individuals can be up to two or three hours each way, so if you have an injection site that is close to your house, count your blessings.

    • kevin-schaefer

      Member
      September 26, 2018 at 3:06 pm

      Indeed. Yeah I am glad more centers are popping up and that the drug has become more widely available.

  • deann-r

    Member
    September 27, 2018 at 10:24 am

    I have to travel 2.5-3 hours each way for my injections.  Since I don’t have transportation I have to schedule that.  Luckily as long as I can get it pre-authorized it’s covered so I use a service called MediVan.  It certainly gets to be a long day especially since I try to cluster all my appointments the same day.  When Spinraza first came out I knew of someone who would travel from Florida to California for treatment.  Thankfully she had family she could stay with for the loading doses, but still that seems like a trek.

    • kevin-schaefer

      Member
      September 27, 2018 at 12:32 pm

      Yeah that is quite a distance. That’s good you can get rides covered though. Is MediVan just in your state or is it nationwide?

      • deann-r

        Member
        October 4, 2018 at 11:21 am

        I’m not sure how it works in other states, but once I established the need for transportation to and from medical appointments I was approved for 5 years.  Then I can choose among companies that provide the services.  Around here a couple are MediVan and CareCab.  I’m sure there are others, but those are the ones I’m familiar with.  After 5 years I’ll have to get reassessed.

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