Skyclarys access for Friedreich’s ataxia
Deputy Newsome Drennan sought timely access to Skyclarys for Friedreich’s ataxia patients facing long waits at Tallaght. The Health Minister said services would begin on 2 October, with the drug available and the hospital reallocating neurology capacity, but the number initially treated was not established.
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 prescribed. This is simply unacceptable. Services have been underfunded for years. Patients should be seen yearly but some are waiting two and a 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 the HSE and the Department of Health and this is simply a bit of a shitshow.
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I am sorry for that but we are a little bit frustrated.
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I was in Tallaght on Friday and the CEO confirmed that services will begin on 2 October now that the drug is physically in the country. We will get more of it as time goes by. Services begin on 2 October, which is the earliest possible time we could do. I spoke with the CEO on Friday and this will impact on and disrupt other neurology services but they are moving heaven and earth to make sure patients can get it as quickly as possible.
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How many patients will have it on 2 October?