Cambridge MP Daniel Zeichner used a Parliamentary debate to slam Government cuts which will limit access to new medicines for patients. He quoted the MPS Society who have said that the Government cuts “have reduced children with ultra-rare diseases to pawns in a failing NHS who are cheaper dead than alive.” He quoted Cambridge examples and patient experience from a recent visit to the Biomedical Research Centre based at Addenbrookes.

Mr Zeichner warned that recent guidance published by NICE, which introduces a financial cap for access to new medicines, could have a profound impact on people affected by rare diseases in the UK. He criticised the Government for allowing a highly significant change to be announced by NICE rather than be debated in the House of Commons: “A change like this, a highly political one, should be discussed here, not outsourced.”

NICE is proposing an upper limit for costs per quality-adjusted life year, above which it will not recommend funding for highly specialised technology treatments. Mr Zeichner said that lives could be lost because of this new rationing system. The Government published their rare diseases strategy in 2013, but has not yet published an implementation plan for the commitments it contains.

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