Rose Conway Walsh (Sinn Fein) | Oireachtas source

I again want to talk about the drug Spinraza. I very much welcome the decision made by the British Government and the National Health Service, NHS, to provide it for the treatment of spinal muscular atrophy, SMA. It absolutely and definitively puts the onus on the Government and the HSE to approve the use of the drug here. I am delighted that another jurisdiction has reached a deal with Biogen and it also appears that the price has been lowered when compared with that offered previously, including the offer made to the HSE. It is vital that the price be taken into consideration as the HSE considers its next move in negotiations.

A very important part of today's announcement is the reference to "real-world evidence of its long-term benefits". This, with the possibility of a reduced price, provides the impetus for the HSE to finally provide Spinraza to further improve quality of life for SMA sufferers. However, it is imperative that this momentum not be lost. As I have said from the very first time I raised the issue, time is of the essence for SMA sufferers. Spinraza is a life changing drug for children in County Mayo such as Grace O'Malley and Cillian Mearns and others who are affected. It is not lost on the families that after today's decision, Ireland and Estonia are the only EU countries yet to provide this treatment. The HSE leadership team was due to meet this week to make a decision on use of the drug. There are no excuses left. Will the Deputy Leader answer the following questions? Did the HSE leadership team meet yesterday to discuss the availability of Spinraza? When will a decision be made? Does the HSE have full information from Britain on the price paid to Biogen? As I said, time is of the essence. I personally know some of the parents and their children, as the Deputy Leader probably does, and they are watching their children shut down. As there is a real lack of humanity, I ask the Taoiseach to intervene and ask the Minister for Health to provide Spinraza for these children.

I welcome the announcement made today that €20 million will be made available to remedy the pyrite problem. We have called for action and met the Minister many times to discuss the matter. It has been a long journey. I commend the Minister of State at the Department of the Environment, Community and Local Government, Deputy English, because he did give us his word. We want to make sure the houses that are affected the most will benefit immediately from the money. I am a little concerned that it will get caught up in local authorities which may not have the resources to do what needs to be done. I, therefore, ask the Minister of State to come to the Seanad in order that we can thank him for making the money available and work out the implementation plan with us.