Dáil debates

Thursday, 7 April 2022

Ceisteanna ar Reachtaíocht a Gealladh - Questions on Promised Legislation

 

1:00 pm

Photo of Pádraig O'SullivanPádraig O'Sullivan (Cork North Central, Fianna Fail) | Oireachtas source

I am glad the Tánaiste is present. Given that he is a former Minister for Health, he may be able to provide some insight on the ongoing difficulties about rare diseases and orphan drugs, and, in particular, the commitment in the programme for Government for a successor to the national rare disease plan.

In addition, I am also interested in the publication - this has not yet happened - of the Mazars report, which will hopefully give us some insight into the health technology assessment process and how we are lacking on that side. That report was put together in late 2019 or early 2020 and is sitting somewhere on a desk gathering dust. I raise this matter in the context of the drug Luxturna, which could possibly benefit four people in the country, three of whom are children who will inevitably end up blind unless they receive doses of that necessary drug. Can the Tánaiste provide any insight regarding the publication of the rare disease plan and comment on the availability of Luxturna?

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