Government urged to fund pipeline drugs

We heard at the meeting from a parent who was told by their paediatrician that it was as bad as it gets,” he said.

Mr Calleary referred to testimony heard from Grace and Cillian, children who have this condition.

SMA is a group of inherited diseases of the motor nerves that cause very debilitating muscle weaknesses and wasting.

There are 25 children in this country with this condition. It presents them with a number of burdens. They are wheelchair-bound, suffer muscle recession and considerable pain, and daily life is virtually impossible when it comes to handwriting and other small things.

Mr Calleary called on the Government to back a new drug called Spinraza, which he said is the first treatment of its kind in the world.

“Spinraza is making an enormous difference in over 20 countries across Europe to these children and their families,” he said.

Here, however, it is still not available under the refund scheme, despite the fact that on June 22 last the minister [for health], Deputy Harris, announced that Ireland would join Belgium, the Netherlands, Luxembourg, and Austria in the Beneluxa initiative, which aims to secure affordable and timely availability of medicinal products.

The hopes of those 25 children and their families were raised in June by the announcement of our joining this alliance are therefore now cruelly dashed, and their frustration and anger is palpable, said Mr Calleary.

Tánaiste Simon Coveney has said that the European Medicines Agency had granted market authorisation for Spinraza, and, in October 2017, the HSE received a reimbursement application.

“The application is currently being processed by the HSE,” he said. “No decision has been arrived at yet as to the statutory assessment process that is still ongoing.”

Sinn Féin’s Pearse Doherty raised the fact that there are 3,850 children across the State with a disability or suspected disability who are overdue for an assessment of needs. He said these children are at their “wits’ end” given the lengthy delays they have to face to get the treatment they need.

Mr Coveney said progress is being made and will continue to be made.

We will continue to put funding into these services as necessary in order to get back to where we need to be,” he said.

Meanwhile, Labour leader Brendan Howlin raised recent media speculation that the Government is looking to consider a capital gains tax break to charge less than half of the regular amount in tax due on the sales or development of vacant property.

He said the financial crash of the last decade was caused by a plethora of housing tax breaks which led to the market overheating.

“Yet the Minister for Finance seems prepared to again consider the same failed strategy. He should not,” Mr Howlin said.