Senior Fianna Fáil members push Government to overrule HSE on drug funding
There are internal disagreements within Fianna Fáil over the HSE's decision to not fund a drug to treat Friedreich's ataxia.
It follows outcry from those suffering with the neurological disorder, who had been calling for the Skyclarys drug.
More than 40 members of the Fianna Fáil parliamentary party have written to the Taoiseach raising 'serious concerns' about the issue.
A letter seen by the Irish Examiner, shows junior minister Catherine Ardagh was amongst those rejecting the decision.
The letter 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.
The letter states 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."
It was sent to Taoiseach Micheál Martin, Tánaiste Simon Harris, Minister for Health Jennifer Carroll MacNeill, and Ann O'Connor, chief executive of the HSE.
