Rose Conway Walsh (Sinn Fein) | Oireachtas source

I congratulate Ms Liadh Ní Riada, MEP, who is the presidential candidate nominated by Sinn Féin. I thank her for agreeing to represent my party in the election. She is a wonderful, formidable woman who has overcome an awful lot in her life. The one thing that appeals to me about her is not only that she is formidable, courageous and all of those things that I admire in any human being, but she is standing forward. I would be proud to have her as our President. She would be a president for all of the people and nobody would be left behind in a country where she was president. I wish her well in her campaign and I also wish the other presidential hopefuls well, including Senator Joan Freeman. It takes a lot of courage to put one's name forward and I appeal to the media not to engage in the viciousness and nonsense that usually goes on, particularly in the presidential election race. I urge the media to give us a chance to get to know the candidates and see what they stand for and believe in. A little fairness would go a long way.

Like Senator Craughwell, I want to raise the issue of SMA II, as I met the families at the presentation in the AV Room. SMA is a degenerative disease. It is the number one cause of death in infants and causes deterioration in muscle tone and strength, usually ending in premature death. There has been a breakthrough with a new drug called Spinraza, which dramatically decreases the loss of the motor neurone function for patients with SMA. Spinraza is the first drug to be approved for treating the disorder. In May 2017, the European Medicines Agency granted market authorisation for this drug and, in October 2017, the HSE received a reimbursement application. There was great disappointment among the SMA community when, in December 2017, the National Centre for Pharmaeconomics completed a health technology assessment of Spinraza and did not recommend the reimbursement at the price submitted. The assessment was considered by the HSE drugs group in May 2018 but no decision has yet been arrived at.I ask the Leader to bring our concerns about this issue to the Minister for Health and to ask him to speed up the process. Unfortunately, many of the people affected by this do not have the luxury of time. It is a travesty and contradicts the scientific evidence of the merits of the drug that it has not been approved for reimbursement. It has been approved in 19 other countries. This happens so many times with these drugs for rare diseases. Those living in this country - the children we met in the AV room - have the same rights as those living in other countries, and they deserve to get the drug as well. It is not down to an issue of cost because if we can give charitable status to foreign vulture funds, which make billions out of this country, we can surely make these drugs available to a small number of children and people affected.