HSE make decision to reimburse cost of Skyclarys

“I’m so happy for everyone,” said Shanice O’Reilly, a Mullingar Woman with Friedreich’s Ataxia, on the decision last week that the HSE cover the cost of the life changing drug, Skyclarys.

It had been a long battle for patients in Ireland living with Friedreich’s Ataxia, and there were constant barriers between them and the treatment.

Initially, it had been recommended that the drug not be reimbursed and on Sunday week last, a protest took place in Dublin urging the HSE to reconsider that decision.

Shanice O’Reilly had told the Westmeath Examiner (reported in last week’s edition) about the toll the fight has taken on her and her fellow FA’ers (as she calls them) and this week she spoke about how much of a relief the news has been. “I’m so happy for everyone,” she said. “It was such a hard road, everyone was exhausted and I wasn’t ready to fight any more.

“I was on a work call when the news came in. My phone was hopping, I couldn’t wait for my meeting to end.

“The first thing I’m doing is booking a gym membership.”

Shanice is in a wheelchair due to her Ataxia, and Skyclarys has the ability to restore some of her mobility.

Last week, Health Minister Jennifer Carroll MacNeill, TD, said in a statement: “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 their 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 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.”