Thursday, 21 May 2020
Covid-19 (Health): Statements
Gino Kenny (Dublin Mid West, People Before Profit Alliance)
My next question is not in respect of Covid. Last year, the Minister made an announcement regarding access to Spinraza for those living with spinal muscular atrophy. Unfortunately, the response I received yesterday to a parliamentary question indicates that fewer than half of the applicants approved for Spinraza have received it. Glen McHugh Farrelly, one of those applicants, is 19 years old and a student at Maynooth University. He is frustrated by the process. He thought he was going to get Spinraza at this time last year and would be able to move on with his life. However, 18 of the applicants have not received the drug. The Minister knows as well as I do that time is of the utmost essence in the context of this drug and the condition. Can he give any assurance to those 18 people and their families that they will be able to access this drug as soon as possible?