Rose Conway Walsh (Sinn Fein) | Oireachtas source

I welcome the approval of Translarna, which the Cathaoirleach will know I have often discussed in the House in connection with Lewis Harte-Walsh and other boys with Duchenne muscular dystrophy, DMD. Over the weekend, Lewis's mum, Ann Marie, described it as like winning the lottery, only better. That is good for Lewis and those other boys, but there should not be a lottery situation.

The fight continues for Spinraza for children with spinal muscular atrophy. The arguments continue based on price alone. I plead with the HSE, Biogen and the Ministers, Deputies Donohoe and Harris, to concentrate negotiations over the next 30 days and find a solution that allows Spinraza to be approved. These children and their families have been dragged through a long bureaucratic nightmare of "will it or won't it be approved". That has to stop. The inhumanity of withholding this drug is devastating as parents watch their children literally shutting down. The State has been generous to these pharmaceutical companies and the pharmaceutical industry. It is now time for them to return some of that generosity earnestly and urgently.

For the Government's part, it is unthinkable that these children would be sacrificed at the altar of the overrun at the national children's hospital.