Dara Calleary (Mayo, Fianna Fail) | Oireachtas source

-----but we have spoken to the company. I accept that the Tánaiste has been given incorrect information. That is why he needs to take charge of this as deputy prime minister. The families have no confidence in the HSE or in the management of the Department of Health to see this through. Those prices are way out and they cannot be used to stop families accessing a better future.

The Taoiseach, of course, tweeted this morning, in the lack of anything of substance, that today is international Rare Disease Day and, "Up to 300k people in Ireland will be affected by a rare disease in their lifetime. We will do better in helping these patients & families in Ireland". Let the Government do better. Let it do better for the parents of children and adults with SMA and give them access to something that will transform their lives. We want the Tánaiste and the Minister for Health to meet these parents and patients to understand how important this is and the transformative nature of this drug because the HSE clearly does not. I ask the Tánaiste to get the right information.

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