Jerry Buttimer (Fine Gael) | Oireachtas source

I welcome the Minister of State to the House. I raise this on behalf of the 36 children excluded, particularly Eimear and her mom Julie. This is about the availability and accessibility of a life-changing cystic fibrosis drug. A total of 36 children between the ages of six and 11 are being excluded. It makes no sense, as the treatment prevents damage to the lungs. Cystic fibrosis diminishes the quality of life and left expectancy of young children who have it. This new medication Kaftrio allows cystic fibrosis patients to live a fairly normal life. I know of a number of young children who have it and have benefited enormously from this drug therapy. Their quality of life has been enhanced beyond words. It is a vexing issue for the families in question, that is, Eimear, her mom Julie and the 35 other children.

There is the issue of gene mutation not being covered by the HSE. Cystic Fibrosis Ireland, which has done an extraordinary amount of work and advocacy, including on this matter, has asked the HSE and the pharmaceutical company to return to the negotiating table to allow the 35 children to access this life-saving drug. It is a pricing dispute, from what I can gather. More important, this is about enhancing the quality of life of young people, ensuring we do not allow further damage to their lungs and pancreas and, as the Minister of State said, the postcode lottery is eliminated and we allow for accessibility.Cystic Fibrosis Ireland asks that the children in this case are not used as pawns in a pricing dispute between a pharmaceutical company and the HSE.

We are discussing a difficult issue. If we have learned nothing else from Covid-19, we have learned that we can change how we do business at the flick of a switch. I urge that we do something similar in this case. We should not allow young children and their families to be used a part of a negotiation between the HSE and a pharmaceutical company.

A press release from Cystic Fibrosis Ireland states:

Cystic Fibrosis Ireland understands that Vertex is currently seeking an enhanced price for the 35 children concerned, which is different to the price charged for all other children and adults under the Portfolio Agreement. As a result, we understand that the HSE has been unwilling to accept this price and has instead referred the matter to the National Centre for Pharmaco-Economics (NCPE).

I am sure Professor Barry has a role to play in that as well.

On behalf of the children, their families and Cystic Fibrosis Ireland, I implore those concerned to find a resolution to this matter and to allow access to the Kaftrio drug therapy. This is about quality of life and enhancement of life, and about saying to these children that they can live a life free from worry and concern.

I thank the Minister of State for coming to the House to represent the Minister for Health. I know this is not her area of responsibility. I ask her to convey to the Minister my concerns and those of the families.