Bobby Aylward (Carlow-Kilkenny, Fianna Fail) | Oireachtas source

Page 105 of the programme for Government commits to ensuring that every young person is enabled to reach their full potential. On this day four weeks ago, I raised as a Topical Issue the reimbursement of the drug Vimizim for the treatment of Morquio A syndrome on behalf of an 11 year old girl from Kilkenny who suffers from this condition. I met the Minister on two occasions when the family was seeking to have this issue sorted out.

The HSE drugs group has denied a number of applications for reimbursement. However, written replies to parliamentary questions reveal the drug was discussed at a meeting of the group on 18 January. During the aforementioned Topical Issue debate, the Minister of State, Deputy Jim Daly, assured me that efforts would be redoubled and that the Department would make contact with the HSE that day to seek further updates. I had expected an update from the Minister, Deputy Harris, or the Minister of State, Deputy Jim Daly, but I have yet to receive one. Has the Minister contacted the HSE drugs group in respect of reimbursement of the drug?

This drug is available in the UK and in most countries in Europe. It is endorsed by their governments and is handed out, yet, while it is manufactured here in Cork, we cannot use it in Ireland. What is wrong? What is wrong with the drugs group that it cannot come up with an answer and give these people some quality of life? It affects eight children in total but only three children who need it are getting it.

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