SMA News Forums Forums Treatments and Research Spinraza (nusinersen) Will the UK approve Spinraza when they’ve denied other costly treatments?

  • Will the UK approve Spinraza when they’ve denied other costly treatments?

    Posted by deann-r on September 19, 2018 at 10:02 am

    Recently we posted that the agency, NICE, that makes the decisions about what therapies the UK should offer had opposed Spinraza as they didn’t deem it cost effective.  However  this decision is up for review and a determination should be reached by the end of October early November.  What has come to my attention is that NICE is objecting to other costly treatments for other diseases as well.  A blood cancer treatment for children, CAR-T, has also had a preliminary denial.

    My first thought was how could they deny life saving treatments to children?  It seems cruel when you know there’s something out there to help.  My second thought is that maybe they initially deny it to try to get the cost down.  Although I understand trying to keep costs down, lives hang in the balance while these games are being played.

    Below are links to two articles where I got my information.  What are your thoughts?  Should the UK stand their ground to get more affordable treatments?  Are drug companies pricing themselves out of the market?  Should treatments be offered no matter the cost?

    https://smanewstoday.com/2018/08/14/nice-opposes-adding-sma-treatment-spinraza-uk-public-health-system/

    https://finance.yahoo.com/news/uk-rejects-adult-novartis-car-114501862.html

    kevin-schaefer replied 5 years, 6 months ago 2 Members · 1 Reply
  • 1 Reply
  • kevin-schaefer

    Member
    September 19, 2018 at 1:05 pm

    Thanks for sharing this DeAnn. It really is a tragedy that human lives are being ignored due to costs of treatments. I do hope N.I.C.E. will change its decisions, but it’s hard to say.

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