Kells Community Rep Cormac Corr PC has called on the HSE to reverse what he has described as a “poorly judged, poorly considered decision” following its decision not to recommend reimbursement of Skyclarys, the only licensed treatment for Friedreich’s ataxia. Friedreich’s ataxia is a rare, inherited and progressive neurological condition which damages the nervous system and can also cause serious heart problems. There are approximately 200 people living with the condition in Ireland.
Speaking on the matter, Corr said: “Friedreich’s ataxia is a debilitating illness which, for too long, has had a tremendous impact on families across this country. It is a tremendous mistake not to progress with the reimbursement of a drug which has already been approved in many European countries. Quite frankly, it borders on inhumane.”
The main argument against reimbursement presently appears to centre on the cost of the treatment. Skyclarys currently costs approximately €280,000 per patient per year, with treating the Irish patient population potentially costing around €130 million over five years.
Corr argues that this must be viewed in the context of the benefit to patients. “I would argue that we should be very wary of attaching a price tag to the benefits of a health service serving the people. Clinical data shows that Skyclarys can slow the progression of Friedreich’s ataxia, helping to preserve physical function, coordination, balance and independence for longer. In clinical trials, patients experienced less deterioration in neurological and everyday physical function than those receiving a placebo.
“We should never allow a monetary issue, particularly at a time when we are continuously being told that this country is on track for a forecast surplus, to get in the way of providing care to those who need it. There are real people and real families behind these figures, and they deserve to know that the State is prepared to stand with them.”
Corr said he was hopeful that the precedent set in 2019 involving Spinraza could demonstrate that there remains significant scope for the HSE to change course.
In that case, the HSE’s senior leadership team overrode a negative recommendation and authorised reimbursement of the drug for patients with spinal muscular atrophy.
However, Corr believes it is imperative that local representatives make their position known.“I would call on all TDs and Senators in both Meath constituencies to join the growing number of their colleagues who are challenging this misguided decision.
“Take a stand and say clearly and proudly that we are a country that will provide for those who need help. We are a country that stands on the side of science and patient care, rather than allowing budgetary considerations to become the sole determining factor in whether someone gets access to treatment.
“Behind every one of those 200 patients is a person, a family and a life. We should not lose sight of that, not now, not ever.”
