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

As the Tánaiste is aware, the Government has a proposal to deal with orphan drugs, particularly in cases that need to be resolved. Many of these drugs are examined in the same way as mainstream drugs and it does not work. Two girls, who have been here on a number of occasions, little Grace from Leitrim and Cezy from Kilkenny, are waiting for a drug called Vimizim. The Temple Street hospital clinicians who deal with morquio put a proposal to the HSE a couple of months ago for a managed access programme. The managed access programme is the way forward and I have spoken to the Minister about this, but to this day it is shrouded in secrecy. I believe this is being looked at and progress is being made, but the problem is the HSE makes everybody say nothing. Keep it under wraps and tell nobody. Will the Tánaiste please ensure somebody in the HSE leadership team comes out and publicly states what is going on so we and everyone else can put pressure on the company to continue to give these girls the drug they need?

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