Aontú’s Peter O’Donoghue has called on the Taoiseach, Tánaiste and Minister for Health to intervene immediately and make the drug Skyclarys available for those suffering with Friedreich’s Ataxia, saying the government must “end the standoff” with patients who need help.
He made the call ahead of a march to the Dáil this weekend by campaigners.
The Cork County Councillor Peter O’Donoghue says: “The whole country stands with the patients; this drug must be funded now for sufferers in desperate need.”
“It was shocking to hear the HSE Drugs Group decided Skyclarys should not be covered by the HSE for treating those with Friedreich’s Ataxia,” he added.
“Friedreich’s ataxia is an aggressive neurological disease which has a major impact on the quality of the lives of those who suffer from it. Up to very recently there was no known treatment for this disease. This changed in February 2023, when this drug was approved to treat the disease. But now it won’t be reimbursed by the HSE for patients in Ireland. This is despite the fact that lots of other countries fund it.”
“This decision by the HSE drugs group is the wrong decision. “If this decision is upheld, it will effectively destroy any hope for those with the disease to live a life of any great length or quality as the price of €280,000 per year is far too much for most people to be able to afford. But only 200 people in Ireland have this rare disease and we must look after them with this drug to treat and slow its progress,” he said.
“This decision not to is even more staggering considering that the state seems to have unlimited amounts of money and resources to spend in other areas. Yet it’s unaffordable for the state to spend €160 million on this. The quality of life of those with Friedreich’s ataxia matters.”
“The Irish state must step in and support its most vulnerable. The people and families of those suffering from Friedreich’s ataxia cannot be forgotten about. They won’t be forgotten about.”
“This will not just go away – the whole country knows they need help now. The voices of those affected will be heard. Even the government’s own TDs are calling for this. The Taoiseach, Tánaiste and Minister for Health cannot just move on from this serious issue .They need to act in the interests of the sufferers,” Cllr O’Donoghue said.
Friedreich’s ataxia demonstrators will gather at the Garden of Remembrance in Dublin from 12pm on Sunday, August 23.
Campaign group Care Champions said: “This is about the future, independence, and dignity of 200 young people living with Friedreich’s Ataxia (FA). Their chance to live fuller, freer lives hangs in the balance, and we cannot stay silent while a system decides who is “worthy enough” for treatment.”
“Today it is these families fighting. Tomorrow, it could be someone you love. Access to life-altering medicine should be a fundamental right, not a policy debate,” they said.