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 to the table with a significant new offer in respect … advised that it is working to have reimbursement under the high tech arrangements in place from 1 October. For the treatment of Friedreich's ataxia in adults and adolescents aged 16 years and older, the prescribing will be restricted to designated approved consultants with experience of treating patients
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In debates
have raised the issue of Friedreich's ataxia 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 … Ireland but, more alarmingly, Skyclarys has been cleared to be rolled by the State 23 days ago. To this day, no Friedreich's ataxia sufferer has been contacted by the HSE or otherwise as to when or how the drug is to be administered. Twenty-three days
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
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
In parliamentary questions
Pádraig Rice
Written
Deputy Pádraig Rice asked the Minister for Health to outline the process that will be used to initiate patients with Friedreich’s Ataxia on a treatment (details supplied); and to confirm if all neurologists currently treating patients with Friedreich’s Ataxia across Ireland will be authorised to prescribe
Pádraig O'Sullivan
Written
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
Michael Cahill
Written
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
Robert Troy
Written
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
Matt Carthy
Written
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
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