SMA News Forums Forums Spinraza Where to get the treatment?

  • Where to get the treatment?

    Posted by jasna-grujic on May 5, 2021 at 9:01 pm

    Hi all, and thank you in advance for any information!

    I am from Serbia (living in US for a while now), and I am trying to help a 13 year old girl living there with SMA type 2 to get Spinraza treatment. She was recommended this several years ago, but at first the treatment was not available in Serbia. Then it got available, but only for up to certain age that she has already passed. Long story short, the doctor told parents to go abroad and pay for the treatment, and that she is to receive it ASAP. She was recommended 6 treatments, and that was 3 years ago. The parents are finally ready financially to pay out of pocket for the medication after all this time of fundraising.

    I am tasked to help them find where to go. Does anyone know how to go about this? I can start emailing hospitals, but any advice is appreciated – and any contact information.

    Thank you all!

    mike-huddleston replied 2 years ago 3 Members · 4 Replies
  • 4 Replies
  • deann-r

    Member
    May 6, 2021 at 8:31 am

    Jasna, welcome to the forums. Great to see you being so supportive. Unfortunately I don’t have much information for you. Since Spinraza is an ongoing treatment I can’t see 6 doses being of much benefit. At one time curesma.org had a list of sites that provide treatment. I’m not sure if they still do but you could check. Best of luck to you and your friend.

  • alyssa-silva

    Member
    May 6, 2021 at 10:01 am

    Hi Jasna. Perhaps you could contact Boston Children’s Hospital in Boston, Massachusetts. This is where I receive treatment and I know they accept patients from around the world to receive treatment. Click the link below and their contact information will be at the top of the page. Best of luck. You’re such a great friend!

    https://www.childrenshospital.org/centers-and-services/programs/o-_-z/spinal-muscular-atrophy-program

  • jasna-grujic

    Member
    May 6, 2021 at 12:06 pm

    Thank you all.

  • mike-huddleston

    Member
    May 22, 2021 at 10:33 am

    Sorry so late getting to this, but I’d also suggest contacting BioGen directly.

    Contact Us (biogen.com)