CONFIRMATION that the HSE will reimburse the use of the drug Skyclarys for people living with Friedreich’s Ataxia has been welcomed by a Clare TD.
On Tuesday, the HSE approved the reimbursement of the drug following a substantially improved financial offer by drug firm Biogen to the HSE.
In a statement, the HSE said Biogen had “moved substantially from its previous position, and the HSE wants to express its appreciation of the flexible and constructive approach shown by the company”. The HSE Senior Management Team met on Tuesday morning and said that following the “very different commercial offering to that which the HSE Drugs Group considered”, the team decided “on balance” that it would “approve reimbursement for Skyclarys based on the new commercial offering”.
Friedreich’s Ataxia is a rare, progressive neuromuscular condition that causes nerve damage, muscle weakness and mobility loss. It is believed there are around 200 people with the condition in Ireland and the drug is the first treatment for it and can slow down its progression.
Clare TD, Cathal Crowe (FF) has raised the issue in the Dáil over recent months. He said the decision will bring enormous relief for patients and their families. “Over the past number of months I have met and spoken with people living with Friedreich’s Ataxia and their families, and I have been hugely impressed by the determination they have shown. They have had to fight extremely hard to get to this point. For them, this was never an abstract discussion about budgets or reimbursement processes. Friedreich’s Ataxia is a progressive condition and every month spent waiting matters.
“I have raised Skyclarys directly through the Dáil and through Parliamentary Questions because I strongly believed that every possible avenue needed to be explored to get this treatment to patients. There were times in recent weeks when the outlook looked particularly bleak, so today’s announcement is all the more significant. I also welcome the fact that further discussions between the HSE and Biogen resulted in a substantially improved financial offer. It shows what can be achieved when all sides remain at the table and continue trying to find a way forward,” he stated.
Deputy Crowe outlined, “Most of all, however, today belongs to the people living with Friedreich’s Ataxia and their families. They organised, travelled to Dublin, met politicians, spoke publicly about very personal circumstances and refused to allow this issue to disappear from the agenda. Their campaign has been dignified, determined and ultimately successful. There will understandably now be a desire to see patients accessing Skyclarys as quickly as possible. Having waited this long for a positive decision, we need to ensure that the remaining administrative steps are completed without unnecessary delay. I’m delighted for every family receiving this news today. It has been a long road to get here, but thankfully it has ended with the right decision”.
