Little Evie faces move to England to get new drug

Maryanne and Evie Mooty
Maryanne and Evie Mooty
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A CLELAND mother says she may have to move south of the border after the Scottish Medicines Consortium (SMC) announced on Monday a new drug will not be made available in Scotland.

Maryanne Mooty’s daughter Evie suffers from Cystic Fibrosis with the G551D gene mutation which could be treated with Kalydeco (also known as Ivacaftor).

The drug is now widely available in England, but the SMC was not convinced offering it through NHS Scotland was financially viable.

A statement on its website said: “The submitting company’s justification of the treatment’s cost in relation to its health benefits was not sufficient to gain acceptance by SMC.

“In addition the company did not present a sufficiently robust economic analysis to gain acceptance by SMC.”

Now Maryanne faces moving to England in order to get treatment for nine-year-old Evie.

She said: “I think we will be relocating to somewhere in England now to get my Evie what she needs.

“I need to take my girl out of her home country and away from her whole life as she knows it because of this decision.

“The whole thing is so unfair.”

Councillor Alan Clinch, who represents the Murdostoun ward which takes in Cleland, has called on Health Minister Alex Neil to step in and provide the funds needed to make Kalydeco available for all.

He said: “Miss Mooty, her friends and family as well as other sufferers across the country have done a fantastic job of campaigning for Kalydeco to be made available throughout the UK.

“I simply do not understand why the Scottish Medicines Consortium has come to this conclusion. Are we effectively saying that these families should uproot their children and move to England to get the care they need?

“I implore Alex Neil to look at this decision. I understand a medicines fund has been announced, but there are still question marks over exactly how this will work.”