Rose Conway Walsh (Sinn Fein) | Oireachtas source

This is World Rare Diseases Day. I have spent the morning with the families of people who are suffering from SMA and I am angry beyond words. They have come here to beg for their lives. Earlier we heard from Eimear, a 21 year old who is studying genetics. Like others affected by SMA, she is shutting down and we are allowing it to happen. We are supposed to be living in a Republic in which we cherish all the children of the nation equally, but we are not doing so. In 2019 why are children and young people coming here in wheelchairs to beg for their lives? It is absolutely unacceptable. I urge two Ministers to become involved - the Minister for Finance, Deputy Donohoe, and the Minister for Health, Deputy Harris. The information we are being given is false. I ask them to stop treating us like idiots as we know that we are not being given all of the facts. We know that we are not being given the correct cost of the drug. They need to instruct the HSE to do its job and negotiate in order that the people mentioned will not need to come here to beg for their lives. Representatives of the HSE need to sit down with representatives of Biogen and work it out. As this is a very time-sensitive subject, it needs to be done without delay. Only 70 people are impacted on. I ask the Deputy Leader to go back and work it out with them. We need to consider the opportunity costs in two ways. The cost of treatment and hospitalisation of the people mentioned is enormous. The other opportunity cost is associated with people like Eimear who are studying genetics and can do wonderful things for the State. We should not lose that opportunity. This matter is both urgent and important. I plead with the Government to do something about it on World Rare Diseases Day.