Martin Kenny (Sligo-Leitrim, Sinn Fein) | Oireachtas source

There are people in the Gallery today from the Irish MPS Society who suffer from the condition Morquio. They were here some months ago when we raised the issue of a drug called Vimizim with the Taoiseach and the Minister for Health, who unfortunately is in a committee today. Only three children in the country use this drug. The matter was before a special health committee about three weeks ago, where it was discussed, but we do not know its decision. This weekend is the last weekend that the company is prepared to continue to give the drug to the children. When one is dealing with orphan drugs, and they are being put through trials, one is dealing with a very small number of people who need it. It is not as though there are hundreds of others to whom it can be sold. A better type of approval process for orphan drugs is needed. I appeal to the Taoiseach to see if something can be done to try to get answers from this group so that people know what is happening, and I ask for more transparency in the process generally, but particularly in the case of Vimizim.

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