Over the past number of weeks, many Deputies have raised the issue of Spinraza and the stress the parents of these 25 children are under while awaiting a decision. The stress these families and their children are under is intolerable, knowing that this drug has huge potential for their lives. At this stage, given that we signed up to this deal with the Benelux countries, surely there is a better way of making decisions like this. I plead with the Taoiseach to try to make a personal intervention and to try to get a decision as soon as possible in order that we can alleviate this dreadful stress on these 25 families.

I am mindful of the concerns and worries of the families affected, one of whom I had the opportunity to meet with a week or two ago on a visit to another part of the country. It is important to reiterate that the Oireachtas decided that decisions on which drugs are reimbursed should not be made by politicians. The European Medicines Agency and the Health Products Regulatory Authority decide which medicines are licensed, and the HSE and the national drugs committee decide which ones should be reimbursed. When the cost and effectiveness of this particular medicine were examined, the best scientific advice was that the cost outweighed the benefits by ten to one, or even 20 to one in the case of older patients. "No" never means "No", however, and it is always open to the company to return with more data demonstrating that the medicine is more effective than had been thought, or to return with a new pricing offer, which would change that gap between cost and benefit.

Unfortunately, even in a wealthy country that is spending a record amount on healthcare the budget will always be limited. We must be sure that we fund those treatments which are the most effective and are fairly priced.