Local TD John Curran yesterday called on Health Minister Simon Harris to urgently authorise the provision of a life changing drug for children who badly need it.

He made his appeal in the Dail for the drug Spinraza to be provided for treatment of
Spinal Muscular Atrophy, a muscle-deteriorating disease which affects 26 children in Ireland.

Two of those young people, Glen McHugh Farrelly and Sam Bailey, live locally in Clondalkin and Rathcoole.

Spinraza is clinically effective and has been proven to work by slowing down the muscle wastage and in many cases allowing muscle strengthening.

It is an orphan drug, which means it is commercially underdeveloped and very expensive.

The reason the HSE have given for not approving Spinraza, which would cost in excess of €20 million over five years, is because they do not deem it to be cost effective.

Ireland and Estonia are the only two countries in the EU who refused to approve access to the drug – the UK approved it yesterday.

Addressing Minister Simon Harris across the Dail Chamber, Deputy Curran said:

“Sam and Glen are two boys who live in my constituency. Both of them suffer from spinal muscular atrophy.

“It is heartbreaking to see because their condition is deteriorating and there is a drug, Spinraza, which would assist them.

“The Taoiseach said earlier that a decision on this had been due and that urgent priority had been given to the matter.

“These families were living in that hope at Christmas when exactly the same words were spoken about the matter being given urgent priority, an assessment being under way and so forth.

“Almost six months later, the issue has not been resolved.

“I have raised this with the Minister before, and the Taoiseach has responded to similar questioning.

“He specifically said he was acting in accordance with the legislation, namely, the Health (Pricing and Supply of Medical Goods) Act.

“If this legislation is impeding us in dealing with this matter, we need to amend and change it.

“It is not tolerable or fair that the only country in Europe in which these children cannot receive this medication is Ireland.

“We will work with the Minister to change the legislation but these families are holding on week by week, meeting by meeting.

As I said, at Christmas there was a real expectation that this would be dealt with, and that has not occurred.

“I therefore appeal to the Minister, if he must work within the legislation and if the legislation is the obstacle, to change it.”

In response Minister Harris said: “I acknowledge that it is a time of huge anxiety for the families affected. I spoke directly to the Director General of the HSE yesterday to inquire where this is at.

“My understanding is that a decision will be delivered shortly. We are genuinely making progress.

“I don’t want to say anymore that could jeopardise the situation but there is a new offering from the company, you are aware of that, the HSE need to assess that.

“I would just make the point that it takes two to close a deal, but I really want this to be resolved quickly and the HSE are aware of our collective views on this.”