Evie Townsley with dad John and mum Maryanne
The parents of a nine-year-old girl with a rare form of Cystic Fibrosis say winning the lottery would not make them feel any better than they do now she will have access to a life-changing drug.
Following a meeting with the Health Minister Alex Neil on January 17, Ed Owen, chief executive of the Cystic Fibrosis Trust, said he had given him his word that everyone in Scotland suffering from the G551D strain of the illness would have access to the drug Kalydeco (Ivacaftor) by March 2013 through a new fund for rare illnesses.
This was music to the ears of parents Maryanne Mooty and John Townsley from Cleland.
Their daughter Evie has suffered from the condition since birth, and the family had been considering moving to England if the drug was not made available north of the border.
Evie’s mum, Maryanne Mooty, said: “I feel like we have been given a lifeline and we are so thankful.
“Winning the Lotto couldn’t possibly feel any better than this.
“We would also like to say a big thanks to Marion Ferguson from G551d patient interest group and all our friends and family.
“A special thanks to councillors Alan Clinch and Robert McKendrick.
“Their support has been amazing.”
In a joint statement, Mr Neil and the Ivacaftor Patient Interest Group said: “The Scottish Government has recently announced the introduction of a £21m fund to cover the cost of orphan medicines for individual patients with rare conditions, which are not available for routine prescription.
“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. Guidance on the prescribing of Ivacaftor will be issued to all NHS boards.
“The Cabinet Secretary was clear that patients with the G551D gene mutation should not end up competing against each other for access to medicines.”
The drug, Kalydeco, will go back before the Scottish Medicines Consortium in the coming months and it is hoped it will eventually be made available through the NHS in Scotland, as it is in England.
The drug prevents the symptoms of the life-limiting condition occurring.
Patients with the G551D gene mutation recently found out the National Centre for Pharmacoeconomics (NCPE) had also rejected the drug for use on the Irish health service.
The body is not the final decision-maker in, but drugs are rarely approved by the Health Service Executive (HSE) after being rejected by the NCPE.
Maryanne said: “We hope that Northern Ireland and Wales will benefit from Kalydeco as soon aspossible.”