The Minister for Health has indicated that a decision on funding the drug Spinraza will be "delivered shortly".

The drug is used to treat a rare genetic condition called Spinal Muscular Atrophy.

The often fatal rare genetic condition affects less than 100 people in Ireland, including around 26 children.

The HSE said has previously said that it could not reimburse the drug due to the high cost.

The price being sought by the company Biogen, which manufactures the drug, amounts to €600,000 per patient for the first year and €380,000 every year after that.

Families of children with Spinal Muscular Atrophy gathered outside Leinster House in February, calling on the Government to fund Spinraza which could improve their quality of life.

Today Minister Simon Harris updated the Dáil on negotiations between the pharmaceutical company and the HSE.

He was responding to a query from Fianna Fáil TD John Curran, who pointed out that the Taoiseach has said that "urgent priority" is being given to the issue.

"Those families were living in that hope at Christmas. We are almost six months later and the issue has not been resolved," Mr Curran said.

He suggested changes legislation if that is necessary because: "It is not tolerable and not fair that the only country in Europe where these children cannot receive this medication is here in Ireland."

He added: "These families are holding on week by week by week, meeting by meeting by meeting.

"At Christmas there was a real expectation that this would be dealt with and it has not.

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," Mr Harris said.

"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."