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EDM (Early Day Motion) 1138: tabled on 30 March 2017

Tabled in the 2016-17 session.

This motion has been signed by 10 Members. It has not yet had any amendments submitted.

As this motion is using historical data, we may not have the record of the original ordering, in which case signatories are listed alphabetically.

Motion text

That this House is deeply concerned by the proposals from NHS England and NICE to introduce a cap of £20 million on drugs in their first three years with the possibility of restricting access to the drug if this cap is breached; notes that the cap is arbitrary and does not balance the effectiveness of the drug against its inevitable cost; further notes that new drugs and those that treat ultra-rare diseases are often more expensive by their nature; notes that the cap could be applied to existing drugs once their Managed Access Agreement period comes to an end and that this could see very ill people having the medication that is currently treating them taken away, including Morquio sufferers who currently take the Vimizim drug; notes that the development of new drugs could be severely hampered by this cap and new drugs could delay access to new drugs or even stop them becoming available altogether, including Exondys 51 which treats Duchenne Muscular Dystrophy and nusinersen to treat spinal muscular atrophy; calls on the Government to review the proposed cap and focus more on outcomes than cost; and further calls on the Government to guarantee that existing drugs such as Duchenne treatment Translarna will not be affected by this cap and will not be taken away from those people benefiting from them today.