Dáil debates

Wednesday, 26 September 2018

Ceisteanna ar Reachtaíocht a Gealladh - Questions on Promised Legislation

 

12:50 pm

Photo of Lisa ChambersLisa Chambers (Mayo, Fianna Fail) | Oireachtas source

Last Tuesday I asked the Taoiseach about the provision of the drug Spinraza for children suffering from spinal muscular atrophy, SMA. In his response he said efficacy was one of the issues as well as cost. I ask him to correct the record, as efficacy is not an issue. The HSE has fully acknowledged that the drug works and works well, and it is solely an issue of cost.

I ask the Taoiseach to ask the Minister for Health to engage with these families because he has not done so. He did, however, manage to tweet that he thinks the HSE should engage with Biogen and that he will make sure that it does this. Biogen and the HSE have, as of yet, had no further engagement. Biogen is waiting for the HSE to respond to it. I ask the Taoiseach again to correct the record and acknowledge efficacy is not an issue. The drug works. I also ask that the Minister of Health be directed to engage with these families and that the HSE be directed to engage with Biogen. I understand the HSE is meeting on Friday to discuss this drug. The families are waiting with desperation to hear that answer.

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