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Dáil
‹ An tOrd Gnó (Atógáil) - Order of Business (Resumed)

Kaftrio access for children

Summary

Deputy Pringle urged action so 35 children with cystic fibrosis could access Kaftrio despite a pricing dispute between the HSE and Vertex. The Taoiseach said talks were ongoing and he would raise the matter with the Minister.

I met with families from Donegal town, Inver and Ramelton in my constituency outside the Dáil today. Families from all across the country were at the gates of Leinster House as part of Cystic Fibrosis Ireland's support the Kaftrio 35 campaign. Some 35 young children with cystic fibrosis are currently deprived of a groundbreaking new drug due to a pricing dispute between the HSE and the provider, Vertex. It is wrong that these children should continue to be deprived. The Taoiseach should act to ensure that the Minister for Health and the HSE respond to make sure this drug is provided to these young people. It can alter their lives significantly and save the State money in the long run, which seems to be the only thing the State understands.

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I am familiar with the issue. I thank the Deputy for raising it. I am acutely aware of the anguish of parents of children with cystic fibrosis and their eagerness to see this drug made available for their children. There is ongoing dialogue between the HSE and Vertex, the drug manufacturer. Efforts are ongoing to ensure that this drug can be made available to those 35 children currently being excluded from it. We were involved in earlier campaigns and got it through, and we are anxious to get this sorted as well. I will talk again to the Minister and raise this issue with him.

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