Spinraza NOT approved in England and Wales – SMA patients bitterly disappointed

What a catastrophic decision for more than a thousand people affected by spinal muscular atrophy in England and Wales.

The National Institute for Health and Care (NICE) decided NOT to recommend the use of Nusinersen (Spinraza®) as an NHS treatment for spinal muscular atrophy in England and Wales.

After Denmark, England and Wales is the next country where his patients are locked out of this therapy

We can only guess that the decision related to the recent safety warning on the side effect hydrocephalus

SPINRAZA (nusinersen) EU label will include information on the potential risk of hydrocephalus

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Mia

About Mia

Mamma till tre barn och tvillingarna, en av tvillingarna min äldsta son har SMA Type I-II. Jag arbetar som undersköterska inom akutsjukvården

11 Responses to Spinraza NOT approved in England and Wales – SMA patients bitterly disappointed

  1. Peter says:

    Was soll man davon halten, nicht viel.😡 Ich denke nicht das es wegen der Nebenwirkung ist, ich denke mehr das andere Gründe hat! Könnte es sein das England und Wales wegen Brexit verunsichert sind! Das man jetzt dadurch teuere Therapien einspart!

  2. Anonymous says:

    🙁Deep frustrated
    Thank you Liz for your support 👏

  3. Sandy - SMA Typ II says:

    I am sure that countries like Denmark, England, Wales will not pursue it with the approval for all types. They all feel confirmed by the shortened studies with Spinraza. This side effect just comes at the right time for those who do not want to support it

    The real reason is others. I appreciate each country has its own priorities and do not want to invest so much money for a drug that the study has never quite finished.

    The only serious study is that of the Germans.
    https://liz-sma-blog.eu/eap-programm-fur-nusinersen-spinraza-in-deutschland/
    https://liz-sma-blog.eu/latest-results-from-the-evaluation-of-children-with-sma-type-1-under-treatment-with-nusinersen-within-the-eap-in-germany/

    Too bad for the people in England, Wales 😥

  4. Traudl - Son with SMA 1 says:

    This is shameful that refuse it completely. At least I thought that would get the hardest group with SMA 1. This is not acceptable. 👎

  5. Biogen statement to the decision, check out http://www.treatsma.uk

  6. Time is not on our side and the longer the process takes the more children will die. We need Spinraza for all who want it, and we need it now.

    http://www.facebook.com

  7. MiaMia says:

    SMA-medisinen Spinraza (nusinersen) ble for kostbar for britiske helsemyndigheter.

  8. Spinraza för alla: Treat SMA ,nu kämpar för Spinraza.

    Efter att medicinen inte har godkänts har patientorganisationen fått ny kraften. Tillsammans med sina medlemmar visar de hur snabbt medicinen behövs

    #############################
    Spinraza for everyone: Treat SMA fight for Spinraza
    After the drug has not been approved, the patient organization has gained new fighting spirit. Together with their members they show how urgently the drug is needed

  9. MiaMia says:

    Spinraza saves lives – TREAT SMA community want nationwide access to Spinraza treatment

  10. MiaMia says:

    Figth for Spinraza ➡️ TreatSMA has responded to draft nusinersen guidance
    http://www.treatsma.uk