Evie gets to stay as drug funding approved

Evie Mooty

Evie Mooty

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A CLELAND youngster won’t have to move south to seek medical treatment after the Scottish Government announced it would supply funding for a new drug.

Nine-year-old Evie Mooty suffers from Cystic Fibrosis with the G551D gene mutation which could be treated with Kalydeco (also known as Ivacaftor).

The Scottish Medicines Consortium (SMC) refused to allow the drug to be available north of the border, however Health Secretary Alex Neil has announced a £21 fund to cover ‘orphan’ medicines, not available on prescription.

Mr Neil announced the fund following a meeting with the Ivacaftor Patient Interest Group.

A joint statement said: “Access to these rare medicines is currently available through the Individual Patient Treatment Request (IPTR) process.

“However, we recognise the fact that as Ivacaftor benefits 100 per cent of the patients with the ‘Celtic gene’ or G551D genetic mutation, it presents a challenge to the IPTR process as it stands.

“That is why the Scottish Government will take swift action to address how best to ensure that where specialist clinicians are supportive of prescribing Ivacaftor, the IPTR process does not present a barrier to accessing it.”

This means that Evie and her family won’t have to uproot and head to England in order to get access to the drug.

Her mum Maryanne said: “Winning the lottery couldn’t possibly feel any better than this.”