Yesterday, I went to visit a family in my constituency where I met a boy by the name of Sam. Sam is eight years of age and suffers from spinal muscular atrophy, SMA, which is a degenerative neuromuscular condition.

Sam is in a powered wheelchair. His mother explained that he is PEG-fed - that stands for percutaneous endoscopic gastrostomy - and does not eat or drink orally. Extensive physiotherapy on his chest and on all his limbs to keep him supple and free from pain are part of his everyday routine. He has endured so much in his short life. He has had long hospital stays, sometimes for weeks and months at a time, largely because of chest infections.

Sam's mother went on to say, however, that his condition is not without hope and that there is a drug that is available in up to 20 countries around Europe but not in Ireland. That drug is Spinraza. I understand there are 20 families and 25 children in this country suffering with SMA from whom this drug would be deemed to have a positive effect.

SMA is a degenerative condition and timely intervention is very important. While I understand that the Government is looking at making this available, I am concerned that the period of consultation is taking a long time. It is young children who are involved. I appeal to the Taoiseach not to hide behind bureaucracy and procedure. I appeal to the Minister of Health to engage actively with these families.

Deputy Lisa Chambers on the same matter.

On Thursday, the families, friends and supporters of children suffering with spinal muscular atrophy, SMA, will demonstrate outside the gates of Leinster House to make sure we are all aware of the suffering their children are dealing with. Yesterday, I met one of the children, Cillian, and two of the families in my constituency who are affected by this terrible condition. They know it is a costly drug. They appreciate that there are other demands on Government. They have yet to receive any correspondence or response from the Minister for Health, however, whom they have tried to contact and who has failed to meet or respond to them. I am asking that the Taoiseach relay to him that he might respond to those families. They are also aware that this drug is not only a game changer but will transform the lives of their children. It is clinically effective and has been proven to work. It is available in more than 20 other countries and should be available here. I ask the Taoiseach to contact those families and for his Minister for Health to do the same. I also ask that he approve the drug without delay.

I know this is a very stressful and worrying time for people with spinal muscular atrophy and their families. I know the day-to-day challenges these people and these patients face in dealing with a progressive and life-limiting illness. It is important to say that this is not a political decision. Deputies should note this if they do not know it and I hope they do not tell anyone otherwise. It is not a case of anyone hiding behind bureaucracy. It is the law. This is not a political decision. Politicians do not sign off on which drugs are reimbursed and which are not.

The European Medicines Agency granted market authorisation in May 2017 and in October 2017 the HSE received a reimbursement application. The National Centre for Pharmacoeconomics, which is an independent expert body made up of doctors and pharmacologists, conducted a full pharmacoeconomic evaluation and did not recommend that the drug be reimbursed due to efficacy and cost. The application is being processed by the HSE's national drugs committee. No final decision has been made as yet and it is always open to the manufacturer to produce new evidence or a different cost profile that would allow the drug to be approved. So far this year, 23 new medicines have been approved for reimbursement.