Keith Swanick (Fianna Fail) | Oireachtas source

I wish to raise an issue in regard to health. I spoke in the Commencement debate earlier on the issue of GPs marching today, FEMPI cuts and the provision of an adequate contract for GPs. I was contacted this morning by the parents of a child with spinal muscular atrophy, about which I and many Senators have spoken in the House. They are still awaiting a date for final approval of the drug, Spinraza, and they are worried the date will be deferred due to the children's hospital overspend. In fairness, we should not keep these people waiting indefinitely, given they and their children are currently in their 17th month waiting for a decision.

This should not be difficult. There are 25 children in the country with this condition. It presents them with a number of burdens. For example, they are wheelchair-bound, they suffer muscular recession, they are in considerable pain on a day-to-day basis and exercise is virtually impossible. We have met many of their family members and all they want is to give their kids the best life they can. We have the means to help them. The means and the treatment is the drug, Spinraza. Given they are now in their 17th month waiting for the announcement, the Government needs to announce the provision of this drug as a priority so the families can put their minds at rest.