There’s relief for those living with Friedreich’s Ataxia with the HSE ruling to go-ahead with funding Skyclarys.
More than 200 people in Ireland have the neurodegenerative disorder and the drug can offer them a better quality of life.
An initial recommendation from the health body’s Drugs Group suggested that the State not help with the costings, estimated to be in the region of €200,000 per person each year.
But today, management overturned that following negotiations with company Biogen.
Statement from the Minister for Health:
“Today is an important day for those with Friedreich’s Ataxia and their families, some of whom I have met. It is an important day in a world where their disease brings far too much uncertainty.
Though I know the statutory process through which these decisions are made is complex, it is important that politics and politicians allow the space for science to be the decision maker.
At a time when there is too much uncertainty in the world, Ireland will continue to stick to science and to the rule of law. Simply put, these processes must be independent and led by experts.
I am grateful to our Health Service Executive (HSE) scientists and to our commercial team involved in the negotiations for their continued and active engagement to reach today’s decision and I thank the manufacturer for their intensive engagement, especially in recent days.
I am grateful to the patients who have so carefully articulated their lived experiences. I am also grateful to the many clinicians who provided the HSE’s Senior Management Team with their expertise and advice to make their decision today.
The HSE will now engage with the company to put in place the process by which patients can gain access to the drug. I have asked that this work commence immediately.”
Junior Minister at the Department of Health, local TD Jennifer Murnane O’Connor, spoke on The KCLR Daily;
Elaine Pollard from Carlow whose son Oisín lives with condition and Kilkenny woman Emily Felix who’s been central to the fight for the funding – both joined Brian on air also;
Fine Gael TD Catherine Callaghan too outlined her reaction;
