Mary Lou McDonald (Dublin Central, Sinn Fein) | Oireachtas source

My question relates to the commitments in the programme for Government to support people with disabilities in maximising their potential and to remove barriers which impact on access to services, education or healthcare. Last week in County Mayo, I met Cillian Mearns, who is seven years of age, and his mother, Lorraine. Cillian and his friend, Grace, are two of the children in Mayo who are awaiting a decision to approve the drug Spinraza to treat spinal muscular atrophy. Cillian's mother told me that time is of the essence for him because his condition worsens by the day and he needs this drug. The decision in February not to approve what has been described as a life-changing drug is morally wrong and has trapped very ill patients, including children such as Cillian and Grace, in the middle of a bidding war between the Government and the pharmaceutical industry. The HSE stated in February that it is likely that there would be further discussions in the following weeks about funding the drug. I understand that a new application has been submitted. These families are desperate for answers. What was the outcome of the discussion with the HSE? When will we see a decision on the latest application? When can we expect a definitive conclusion and the approval of the drug Spinraza?

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