Two Kilkenny young people suffering from rare disease make plea to Health Minister

Two Kilkenny young people who are suffering from a rare disease have visited Leinster House to make a plea to the Minister for Health.

David McInerney and Emily Felix both suffer from Friedreich's Ataxia - a rare neurodegenerative disorder which causes progressive damage to the nervous system.

They, along with three other campaigners who also suffer from the disease, are calling for the Government to provide funding for the drug Skyclarys.

It is believed that the drug would slow the progression of the condition.

Carlow-Kilkenny Fianna Fáil TD Peter ‘Chap’ Cleere raised the campaigners’ case in the Dáil on Tuesday.

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Deputy Cleere said: “Today, five brave young people - David McInerney and Emily Felix from Kilkenny, Eric Fitzgerald from Mayo, Niamh Ní Hoireabhaird from Kildare and Oisín Pollard from Carlow - and their families attended the AV room to raise awareness around the rare disease, Friedreich's Ataxia.

“These five young people all suffer from Friedreich's Ataxia and they need the Government's help with regard to approving funding for the drug Skyclarys, which will make a huge difference to their lives.

“Today, their parents said, ‘Our kids don't have the luxury of time’. They said, ‘Don't let the cost of this drug be the price of the lives of our sons and daughters’.”

He went on to detail the lengths Ms Felix in particular has had to go to in battling the disease.

“Young inspirational Emily Felix from Kilkenny, who is studying to become a solicitor, said that she had to record her voice on to an app so when her voice is gone, her family will remember what it sounded like.

“I am asking the Taoiseach and the Minister for Health to help these people and to urge the HSE to approve the funding for Skyclarys drug.”

In response to Deputy Cleere, Minister for Health Jennifer Carroll MacNeill detailed her meeting with the young people.

Minister Carroll MacNeill said: “I was very pleased to meet with Eric, Emily, Niamh, David and Oisín.

“I thank the Deputy for bringing them in. I have already followed up on the different physiotherapy and other supports that should be due to them and to get an assessment of what they should be getting and what they are getting.

“With regard to the drug, we have a series of different drugs that are coming on stream. The Taoiseach and I have discussed the increasing the drugs budget.

“We are very aware of how much we are already spending on that, how much we want to provide and where we need to go with that.”

She went on to outline the steps her Department is taking to aid the young people in their journey.

“Crucially, with regard to one of their asks, we are shortening the process for the assessment of the reimbursement process, which is going to be 180 days.

“We do recognise the very considerable impact that many of these drugs - without speaking to any one of them in particular - would have on people's lives and the cost of that to the State.”

“Reconciling that is something the Taoiseach and I are very aware of,” Minister Carroll MacNell concluded.

Around 200 people in Ireland live with Friedreich's Ataxia (FA). Skyclarys is the first drug of its kind that looks to slow the progression of the disease.

Some doctors claim that the drug could halve the disease’s rate of progression year on year.

A report from the National Centre for Pharmaeconomics (NCPE) in December recommended against reimbursing the drug, citing high costs.

However, a final decision has yet to be made. Biogen, the company that makes Skyclarys, said it continues to engage with the HSE.