Decision made to reimburse Skyclarys
After years of fighting, patients in Ireland living with Friedreich’s Ataxia have finally claimed victory as the HSE makes the historic decision to reimburse the life changing drug, Skyclarys.
It has been a long battle for the FA’ers of Ireland. There have been constant barriers between them and their treatment. Most recently it was recommended that the drug not be reimbursed which led to nationwide outcry.
On Sunday a protest took place in Dublin urging the HSE to reimburse the drug. Now their fight is over.
Shanice O’Reilly, a Mullingar Woman with Friedreich's Ataxia had discussed the toll this fight has taken on her and her fellow FA’ers and how much of a relief the news has brought her.
“I’m so happy for everyone,” she said.
“It was such a hard road, everyone was exhausted and I wasn’t ready to fight anymore, 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, Skyclarys has the ability to restore some of her mobility.
Earlier today the HSE released a statement regarding this historic decision.
“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 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.”
Longford Westmeath TD Micheál Carrigy has commented on the announcement.
“We welcome the conclusion of the statutory assessment process and today’s positive outcome.
“In our meeting we encouraged the company to engage seriously with the HSE so that a route to reimbursement might be found, and it is very welcome that this positive outcome has happened.
“We have a statutory process for the assessment of new medicines in this country, which must be respected, but it is very important that everyone comes to the table and negotiates for the benefit of patients.
“I want to express my appreciation to all sides for their dedication to get this vital agreement in place.
“We want to thank the Minister for Health Jennifer Carroll MacNeill for her work on this and will continue to work with her to ensure arrangements are finalised and in place as soon as possible.
“We also pay tribute to the campaigners who advocated so hard for this decision, many of whom we know personally, and we know this will be an important day for them and their families.”