Marc MacSharry (Sligo-Leitrim, Fianna Fail) | Oireachtas source

The programme for Government refers to access to breakthrough and expensive medicines. While I acknowledge the Minister for Health signed the Valletta declaration with other countries yesterday, my specific question relates to a meeting on 18 May of the powers that be in the Health Service Executive who will decide on the availability of Translarna, a breakthrough drug for the treatment of Duchenne muscular dystrophy. Only two children in Ireland, both of whom are extremely ill, are eligible for this drug. Substantial delays have occurred in the highly obscure process operated between the National Centre for Pharmacoeconomics and the drugs company in question. Having taken a decision on this matter in September 2016, the HSE did not inform the company of that decision until January 2017, despite a Government commitment, through the IPHA - Irish Pharmaceutical Healthcare Association - framework agreement, to inform companies of decisions within 14 days. I ask the Taoiseach to use his good offices to make contact with the powers that be in the HSE in order that the two families in question, one of whom lives in his constituency, are not made to wait beyond 18 May for a decision on the availability of this important medicine.

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