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Progress on Early Access Programme of Spinraza

Dear Community,

During the last few weeks NHSE and Biogen has been discussing the support for EAP. As we know, NHSE current official position is that they are not willing to fund additional auxiliary costs associated with Spinraza administration. Whilst Biogen expressed willingness to cooperate, pharmaceutical companies in general are not allowed to pay doctors to administer drugs as this can be viewed as breach of conduct.

Considering that EAP is an unprecedented step for NHSE it is not surprising that there has been delay, however it is unacceptable that the delay has been so long and therefore the processes have been accelerated. Biogen has supplied required data which has been accepted by NHSE instead of published data and now further discussion are taking place.

TreatSMA were told that confidential discussions between Biogen and NHSE are taking place right now and that some results are expected to come out by the end of the week.

Meanwhile, parents and patients can put pressure on local Trusts to push for EAP as this still remains a very possible route to gain access to EAP. Please see our Facebook page for updates on which Trusts are up and running.

The Health Secretary did not make official request for Spinraza to be reviewed by NICE before his departure for holidays, which means that this must be pushed on his agenda as soon as he is back.

TreatSMA, SMA Support UK, MDUK and SMA Trust are continuing to push forward for the treatment for all.

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