Local Fianna Fáil representatives are among those to have signed their names to a letter raising ‘serious concerns’ about the HSE’s decision to not fund Skyclarys to help treat those with Friedreich’s Ataxia.
More than 40 members of the Fianna Fail parliamentary party have written to the Taoiseach, Tánaiste, Minister for Health and HSE Chair raising ‘serious concerns’ about the issue and citing how they ‘reject’ the recommendation.
A letter seen by KCLR News, and shown below, shows Junior Minister Catherine Ardagh was amongst those rejecting the decision.
Yesterday we heard from two of the party’s Carlow Kilkenny TDs John McGuinness and Peter ‘Chap’ Cleere – more on that here.
Both of those deputies with Carlow based MEP Cynthia Ní Mhurchú are among those to have signed it.
The Letter
“We are writing to you as Fianna Fáil representatives regarding the recent HSE Drugs Group recommendation on Skyclarys (omaveloxolone), the only licensed treatment available for Friedreich’s Ataxia.
We reject this recommendation. It further highlights that the drug reimbursement system in this country is broken and not fit for purpose. Families living with Friedreich’s Ataxia have watched this process drag on while their condition progresses, and they now face the prospect of being denied the one treatment that could make a real difference to their lives.
At least seven other EU countries including Germany, France, Italy, Spain, Portugal, Greece, and the Czech Republic have already approved this treatment for reimbursement. This further highlights our concern with Ireland’s process, and raises serious questions as to why Irish patients are being left behind their European counterparts on a treatment for a rare, progressive, and life limiting condition.
The NCPE and Drugs Group process was never designed to give patients with rare and progressive conditions a fair hearing within a reasonable timeframe, and this case is further proof of that. We do not believe this outcome reflects what the public or the Government wants for people living with rare diseases in Ireland.
We are asking you, as Taoiseach, Tainiste, Ind Leader and Minister for Health along with the CEO of the HSE to use whatever powers are available to you to ensure that all necessary resources and mechanisms are made available to families affected by Friedreich’s Ataxia. We would point to the precedent set with Spinraza in 2019, where the HSE Senior Leadership Team exercised its authority to override a negative recommendation. We believe the same approach is warranted here.
We would welcome the opportunity to discuss this matter further and to work with you and your officials to find a resolution for these families.
We are writing this letter, not only as public representatives, but also as parents. Every parent would do whatever it takes to give their child the best life possible. As parents yourselves, you can all appreciate and understand this. These people are living every parent’s worst nightmare. They are watching their children waste before their eyes.
Craig Coady came to the Fianna Fáil parlimentary party meeting some months ago and told us how both of his sons, Paudie and Rory both were diagnosed with Friedreich’s Ataxia and how he has since lost Rory just a little over a year ago to this devastating condition. Craig sat before us and pleaded for this drug to be reimbused, he told us that Paudie was “All he had left”
Craig’s words have stayed with us ever since.”
