The €280,000 annual cost of a drug for people with Friedreich's ataxia is cheaper than the cost of providing them with care, a former Minister has argued. 

In recent weeks, sufferers and their families have urged the Government to approve the reimbursement of a life changing drug on the HSE. 

While costly, Skyclarys has been found to slow the progression of Friedreich's ataxia, which progressively damages the nervous system.

However, the National Centre for Pharmacoeconomics (NCPE) recommended against approving the drug, given the significant cost. 

A final decision is due to be made by the HSE’s Drugs Group, which is holding its quarterly meeting this week. 

Taoiseach Micheál Martin is also meeting today with Craig Coady, whose son, Rory, recently died with the disease. 

On The Claire Byrne Show, Senator Anne Rabbitte said she hoped a decision can be made soon. 

“Is it moving at the pace that it should remove that? Absolutely not,” she said. 

“The system that is in operation at the moment is a bureaucratic bureaucratic system, but it's not only that it's out of kilt with where modern technology and innovation and science with drug manufacturing is at.

“We are producing drugs that can absolutely slow down the progress of what the young people that have Friedreich's ataxia have if they get access. 

“We know that it has a 55% improvement.”

Senator Rabbitte added that while the cost of the drug is high, not prescribing the drug to the estimated 200 sufferers in Ireland also comes with its own financial cost. 

“I would flip it on the top of a hairpin and say the cost of care for these people who continue to deteriorate the cost of care if they have to go into residential care is far above that,” she said. 

“And Craig Coady, when he was with our parliamentary party, spoke about he spoke about the lived experience. 

“He knows the cost of care for his wife who is suffering and who is in residential care in Bloomfield.

“If we do an early intervention, an early access programme, we can prevent it getting to that stage and, actually, people can live a more wholesome full life and they can participate in the workforce.”

Main image: Craig Coady and his sons.