Anne Rabbitte (Galway East, Fianna Fail) | Oireachtas source

I thank Deputy Griffin for sharing time. Like Deputies Griffin and Neville, many people in Cork have contacted Deputy Moynihan. Deputy Griffin has set the backdrop and I will now read a letter from a dad who wrote to me. He is a representative of the newly formed parents group of Kalydeco. It was established to try to obtain reimbursement for the cystic fibrosis drug Kalydeco for children aged between two and five years. The drug is already reimbursed for children aged over six. The group represents 18 families that have children in the age group which will benefit from Kalydeco. The letter to which I refer states:

As you will be aware the NCPE recently recommended against the reimbursement of the cystic fibrosis drug Kalydeco for 2 to 5 year olds. at the submitted price. As a father of 3 year old with cystic fibrosis and who has the form of cystic fibrosis that Kalydeco treats, I was astonished, disappointed and saddened at the decision of the NCPE. The NCPE decision was made on the 12th of October of this year. To make matters worse, the NCPE took seven months to make the decision. My feelings of disappointment were worsened largely by the fact that the Government is already reimbursing this drug in six year olds and over and has been doing so sometime since early 2013. So why then has this extension not been made available to 2 to 5 year olds? The drug is safe and more effective in children in 2 to 5 years of age in range than in children and adults over 6. The fact that the Government has not reimbursed the drug amounts to age discrimination. It is not reasonable to say that the drug is not good enough in one age group and not in another.

I am speaking on behalf of 18 families, but cystic fibrosis affects people in every county. When 18 families feel they have been totally and utterly sidelined, they deserve a response. I look forward to hearing from the Minister of State.

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