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MPs call for fresh talks to end deadlock over cystic fibrosis drug

BMJ 2018; 360 doi: https://doi.org/10.1136/bmj.k1337 (Published 21 March 2018) Cite this as: BMJ 2018;360:k1337
  1. Jacqui Wise
  1. London

A raft of new precision medicines for cystic fibrosis is in the pipeline. But will they ever reach patients? Jacqui Wise reports

MPs attending a packed parliamentary debate on access to the cystic fibrosis (CF) drug Orkambi have criticised the National Institute for Health and Care Excellence’s (NICE) current appraisal system as not fit for purpose in assessing the value of precision medicines.1

Orkambi, which was licensed by the European Medicines Agency three years ago and is available in a number of European countries, costs £104 000 (€119 000; $146 000) per person per year. MPs speaking at the debate on 19 March called on health ministers to get around the table with NHS England, NICE, and the drug’s manufacturer, Vertex, to break the deadlock in negotiations.

The debate was held after an online petition gathered more than 100 000 signatures in just 10 days. Sixty MPs attended the debate, many of whom spoke passionately about constituents desperate to access the treatment.

Ian Austin, MP for Dudley, said, “Every day that access to this drug is delayed is another day on which the lungs of people with cystic fibrosis are damaged. New drugs …

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