Anne Rabbitte (Fianna Fail)

I thank the Chair for facilitating a substitution. I am here on behalf of Senator Costello. She sent me a statement I want to read in and then I have a rake of questions.

I would like to apologise for my absence today as this is an issue that is close to my heart. I would also like to thank the witnesses for coming before the committee today. As some of you may know I have been working with families affected by Duchenne muscular dystrophy and access to the drug givinostat. Until a few months ago I had never even heard of DMD. Then a young boy from Tallaght named Archie Ennis was diagnosed with the disease. I saw not only a family but the entire community heartbroken and desperate and I knew something had to be done. As someone who had never heard of this disease six months ago it is now never far from my mind. Since then I have met with other families affected by the disease and have been working closely to push for access to the drug. I organised demonstrations outside Leinster House earlier this year where hundreds of people gathered to raise awareness of DMD and demand urgent action. On the same day I hosted a briefing for TDs and Senators to educate Members of the Oireachtas about the disease and the urgent need for treatment. This has become a personal plight of mine. I have met the families, I have seen the love, the pain and the determination. I stood with them outside Leinster House and I will continue to stand with them until children get access to the treatment.

Senator Costello has two questions. The first is on how many orphan medicine applications have met the 180-day reimbursement decision timeline in the past five years.