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Pressure on Health Minister to approve and supply new cystic fibrosis drug

The Minister and the HSE have been called upon to approve and supply a revolutionary new treatment for certain sufferers of cystic fibrosis.

Image: Sasko Lazarov/Photocall Ireland

THE HEALTH MINISTER James Reilly and the Health Service Executive has been called upon to approve and supply a revolutionary new treatment for certain sufferers of cystic fibrosis.

The drug, called Kalydeco, treats CF sufferers with the G551D mutation – nicknamed the ‘Celtic gene’ – has already been approved by regulators in Europe and the United States.

The European Medicines Agency approved Kalydeco, manufactured by Vertex, which treats people with cystic fibrosis aged six and over who have at least one copy of the G551d mutation. An estimated 1,100 people in Europe have the G551D mutation, with about 100 of those living in Ireland.

Regulators in Ireland must now approve the drug ahead of any negotiations between Vertex and the HSE corporate pharmaceutical unit regarding pricing.

Councillor David McGuinness said that it is now “time for Ireland to lead the way in treating this difficult illness”.

“Across Europe, and the rest of the world, campaigners for those with Cystic Fibrosis will be lobbying politicians and medical organisations to incorporate Kalydeco into their cystic-fibrosis treatment plans and it is time for Ireland to lead the way in treating this difficult illness which affects so many in Ireland,” said McGuinness.

“Ironically, the particular strain of CF which Kalydeco treats is referred to as the ‘celtic’ gene. Ireland has high rates of CF given its population and some commentary, on this topic, attribute this to the famine when higher percentages of the population with CF survived starvation given their ability to endure severe hardship. Nowadays, Ireland has many families who suffer from CF and it is now time for Minister Reilly and the HSE to support these families by endorsing this drug”, he added.

McGuinness said he had raised the issue in Dáil Eireann through the office of Fianna Fáil Health spokesperson Billy Kelleher TD.

“While Health is in a particularly bad way under Minister Reilly given budget overruns and delayed surgeries, this does not mask the need to continue to revolutionise and modernise the medical treatment deserving of the Irish people. The arrival of Kalydeco is eagerly awaited by families across the country who wants, desperately, to improve the quality of lives of their loved ones,” McGuinness concluded.

Read: New drug for cystic fibrosis approved by European regulators>

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