Call for cystic fibrosis drug to be available in Scotland

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Cystic fibrosis x-ray
Image caption,

About 80 people in Scotland would be eligible for Kalydeco, also known as ivacaftor

A new drug for people with a particular form of cystic fibrosis, available in England, must also be prescribed in Scotland, a charity has said.

NHS patients in England will be able to access Kalydeco, also known as ivacaftor, from 1 January.

The Cystic Fibrosis Trust said not funding the drug in Scotland would cause "dismay and heartache".

The trust said it was appalled that people in Scotland were denied a potentially life-changing treatment.

Ed Owen, the trust's chief executive, has written to the Scottish Medicines Consortium (SMC) on the day before the NHS in England begins to fund it for all people over the age of six with the G551D cystic fibrosis mutation.

A decision by the SMC over the drug is expected on 14 January, the charity said.

In his letter Mr Owen said: "We trust that the SMC will reflect carefully on the decision in England, and its rationale, before making its decision on funding in Scotland.

"As the organisation representing people with cystic fibrosis across the UK, the Cystic Fibrosis Trust would be dismayed and appalled at a situation where people in Scotland were denied a potentially life-changing treatment freely available to those in England.

"Such an outcome would cause considerable and unacceptable heartache for families across Scotland."

The charity said around 4% of patients across the UK have the G551D mutation, compared to around 11% of the Scottish cystic fibrosis population.

It said this equates to about 80 people in Scotland who would be eligible for Kalydeco.

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