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Skyclarys was approved for reimbursement on 25 August. It has been a very challenging period for our patients with Friedreich’s ataxia, FA, and their families. If services in Tallaght University Hospital remain unchanged, some FA patients could have to wait until June 2028 to get the Skyclarys … half years. What work has been done since 25 August to ensure there is a timely rollout of the drug, Skyclarys? How many patients with FA will have the medication, Skyclarys, in their hands on Thursday, 1 October? There seems to be a lack of information forthcoming from

sufferers with the Taoiseach on numerous occasions in this Chamber for well over a year. There is a need to approve the drug Skyclarys for people like Emily Felix, Paudie Coady and Emma O'Shea - the latter of whom the Taoiseach visited when he was in west Cork … convey her thanks to the Taoiseach for doing this. The huge fight these sufferers have had to go through to have the drug Skyclarys approved by the State leaves many unanswered questions on how the rare drugs review group works in Ireland but, more alarmingly, Skyclarys has been

been 23 days since the drug Skyclarys was approved for roll-out to Friedreich's ataxia patients. To date, not one patient has been contacted in regard to how they can receive this life-changing drug. Can we have a debate in the Dáil today to clear that

Deputy's interest in this issue. I was very pleased with the decision of the HSE senior management to approve the reimbursement of Skyclarys for patients over 16 years of age with Friedreich's ataxia following substantive engagement and negotiations with the company. The company did come

Deputy Robert Troy asked the Minister for Health if she will provide an update on the approval of Skyclarys for the treatment of Friedreich's ataxia; the cause for the delay in completing the final administrative arrangements between the HSE and an organisation (details supplied); and when will … hospital neurologists be given the formal, logistical clearance to begin prescribing and dispensing Skyclarys to eligible patients. [65199/26

asked the Minister for Health if her Department intends to review the current medicines reimbursement process following concerns raised during the consideration of skyclarys for patients with Friedreich's ataxia; and if lessons have been identified regarding the assessment of treatments for rare diseases. [64548/26

Deputy Michael Cahill asked the Minister for Health the status of the roll out of Skyclarys (omaveloxolone) for patients with Friedreich's ataxia; the reason for delays following re-imbursement approval; when eligible patients can expect to access the treatment; and if she will make a statement

Deputy Matt Carthy asked the Minister for Health the number of patients estimated to be eligible for treatment with skyclarys (omaveloxolone); if additional clinical appointments or resources are being provided to the National Ataxia Clinic at Tallaght University Hospital or other relevant services to facilitate the assessment

Department or the HSE has engaged with a company (details supplied) and the relevant neurology and ataxia services regarding the roll-out of skyclarys (omaveloxolone) following its approval for reimbursement; if a national implementation or treatment pathway has been agreed; the arrangements being made to ensure eligible patients

Deputy Matt Carthy asked the Minister for Health for an update on the implementation and availability of skyclarys (omaveloxolone) for patients with Friedreich’s ataxia following its approval for reimbursement; the date on which it is expected that the first patients in Ireland to commence treatment; the steps