BREAKING: HSE approves Skyclarys reimbursement in huge boost for Kilkenny people with Friedreich's ataxia
Front and centre of the national campaign calling for the HSE to reimburse the drug for treatment of Friedreich's ataxia were Kilkenny’s David McInerney and Emily Felix
The HSE has approved the reimbursement of the drug Skyclarys for people living with Friedreich's ataxia, clearing the way for the treatment to be made available to those living with the condition in Ireland.
More than 200 people across the country are known to be living with this progressive and life-limiting condition, which impacts mobility, independence and quality of life.
The development comes after a substantially improved financial offer was made in recent days by the company Biogen to the HSE following intensive discussions.
The HSE said Biogen moved substantially from its previous position, and the HSE wants to express its appreciation of the “flexible and constructive approach” shown by the company.
Taoiseach Michael Martin has welcomed the decision, stating: “I wish to pay tribute to all those living with Friedreich’s ataxia, and their families, who have endured so much. I thank them for their engagement and their advocacy.
“I understand fully their concerns and anxieties in relation to gaining access to this drug, the first treatment of its kind for this condition.
“It has been a very challenging period for the families, and I wish to acknowledge that.
“We appreciate the fact that this decision came on the back of substantive engagement between the HSE and the company Biogen over the past number of days and weeks.
“The outcome will result in strong engagement with Biogen over the coming years in respect of the treatment of Friedreich’s ataxia.
“It was important that the statutory process for approving the drug was brought to its conclusion, and we welcome this decision, first and foremost for those who need access to Skyclarys.
“The Minister for Health and the Government will now work to support implementation of the HSE’s recommendation as quickly as possible.”
Fianna Fáil TD for Carlow/Kilkenny, Peter ‘Chap’ Cleere has reacted by stating that he is ‘thrilled today to hear the news that Skyclarys has been approved by the HSE Senior Management Team’.
“I would particularly like to pay tribute to my local constituents Emily Felix and Oisin Pollard, for their tireless advocacy for the reimbursement of Skyclarys,” he added.
“I was privileged to host the Friedreich’s ataxia advocates in Leinster House so they could inform members of the house the challenges they face from the devastating impact Friedreich’s ataxia has had on their lives.
“This is a monumental day for those living with Friedreich’s ataxia and their families and now focus must turn to rolling out the drug as quickly and efficiently as possible.”
More to follow...