Yesterday evening, I met a group of individuals who have Friedreich’s ataxia and their families here in Leinster House. They are calling for urgent access to Skyclarys, the life-changing drug for those living with this rare, degenerative neurological condition. I offered them my full support and that of the Labour Party. My colleague Deputy Sherlock has already given them her full support. I was with them when the very disappointing news filtered through that the HSE drugs group had deferred its decision on approval of public funding for the drug. The news in this regard was leaked by means of communications with public representatives as opposed to officially. the Taoiseach acknowledged earlier that there has been poor communication with the group. I ask that this be addressed. Clearly, the most substantive issue is the delay in providing approval for reimbursements. Skyclarys is already being reimbursed in other EU countries. We need to work with other EU member states to reduce costs in line with the Irish EU Presidency priority of competitiveness. Can the Taoiseach give the families some indication that the approval-----

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-----process will be expedited and that there will be no further delays?

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As the Taoiseach understands, this is a heartbreaking situation.

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