Aontú councillor: Government leaders must end standoff with Friedreich’s ataxia patients and fund treatment, saying the issue won’t go away.
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.”
Aontú’s Peter O’Donoghue has called on the Taoiseach, Tanaiste and Minister for Health to intervene immediately and make the drug Skyclarys available for those suffering with Friedreich’s ataxia. He made the call as campaigners plan a march to the Dáil this weekend.
The Cork county councillor said: “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.
“Friedreich’s ataxia is an aggressive neuological 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.”
“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. There will be marches and protests and the voices of those affected will be heard. Even the governments own TDs are calling for this. The Taoiseach, Tanaiste and Minister for Health cannot just move on from this serious issue with public backing.” He concluded