Skyclarys: Senior FF members urge Government to overrule HSE on life-saving drug

Cork dad Craig Coady lost his son Rory (13) to Friedrich’s ataxia in September. His 16-year-old son, Paudie, also has the condition.

Craig Coady speaking with Deirdre O’Shaughnessy in the 'Irish Examiner' podcast studio. See links below. Picture Chani Anderson

A majority of the Fianna Fáil parliamentary party, including a junior minister, have written to Government leaders to reject the findings of the HSE drugs group on the Skyclarys drug.

They have also described the country's drug reimbursement scheme as "not fit for purpose".

The HSE drugs group this week declined to recommend that the HSE cover the cost of Skyclarys which is used to treat Friedreich’s ataxia, a rare genetic disorder that causes progressive damage to the nervous system and can lead to heart complications.

It came to public attention following the heartbreaking story of the Coady family in Cork. 

Craig Coady lost his son Rory, 13, to Friedrich’s ataxia in September. His 16-year-old son, Paudie, also has the condition.

A letter signed by 47 members of Fianna Fáil parliamentary party including junior justice minister Catherine Ardagh has been sent to Health Minister Jennifer Carroll MacNeill, Taoiseach Micheál Martin, Tánaiste Simon Harris and Ann O'Connor, Chief Executive of the HSE.

The letter begins: "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."

The representatives go on to say that "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."

The group references Mr Coady's appearance at the Fianna Fáil parliamentary party earlier this year and asks all four "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".

They say that there is a precedent set with the Spinraza drug in 2019, where the HSE Senior Leadership Team exercised its authority to override a negative recommendation.

"We believe the same approach is warranted here," they add.

"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," the letter closes.

• Paul Hosford, Deputy Political Editor