Rose Conway Walsh (Sinn Fein) | Oireachtas source

I commend all the parents and families of children and adults with autism, this being autism awareness week. They do Trojan work. There are huge gaps in the services and supports and these need to be addressed for families trying to support loved ones with autism. That is something we will continue to work on.

In that context I commend my colleague, Deputy Ó Caoláin, on tabling the Private Members' motion and holding the Government to account on living up to its obligations on disability rights. I hope all parties will support that in the Dáil.

The other thing I want to raise today is the situation we are still in with regard to access to Translarna. You will know, a Chathaoirligh, that Translarna is the medication that is necessary for children suffering from Duchenne muscular dystrophy. It is now months since we raised the matter with the Minister. I appeal to the Leader to go back to the Minister and say that we are extremely concerned that it is taking so long to access this medication and to have this medication, Translarna, approved for children living in this State. We know that it has been approved in 22 other countries. We know that people living only a few miles up the road in the North have access to it. It is intolerable that children living in this State continue to be denied something so vital to their health and well-being and so vital to keep their mobility. I call on the Leader to go back to the Minister to ask him to ask the HSE to engage fully with the supplier of Translarna. It is not good enough to say those responsible should submit another application. The last application submitted took three years. Only a small number of children need Translarna medication but they do not have three years to wait. I urge the Leader to impress upon the Minister the urgency of instructing the HSE to sort this out as quickly as possible in order that these children can have the medication they truly deserve in the same way as children in the North and in 22 other countries.