Skyclarys funding delay
Deputy Bacik pressed for urgent public funding of Skyclarys for people with Friedreich's ataxia after the HSE deferred its decision. The Taoiseach said the rare disease technology group is being convened urgently, the assessment was challenging, and the Government understands the families' distress.
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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I thank the Deputy for raising this matter, which I dealt with extensively earlier in reply to Deputy Cullinane. The Minister is doing everything she can to expedite the convening of the rare disease technology group, to which the matter has been referred. This is very serious and urgent for all concerned. Some countries do reimburse it and others do not. The health technology assessment relating to this matter was published. If the Deputy reads that assessment, she will see that it proved challenging. We are not scientists, but we all feel for the families. We understand. We have met people with Friedreich's ataxia. They cannot get this drug fast enough. For all drug approvals unfortunately, there are processes which, unfortunately, have to be gone through. I take the Deputy's point.