Simon Coveney (Cork South Central, Fine Gael) | Oireachtas source

I thank Deputy Calleary for raising this sensitive and important issue, which has been raised repeatedly. When I have taken Leaders' Question, it has come up almost every second week for many months now.

SMA, as has been described, is a terrible condition with awful consequences for sufferers, and I am sure extraordinary stress for families as well. I completely understand the stress and frustration that each family must be under and the anxiety caused as they wait for news about funding of this drug.

The Government wants an agreement to be reached so that sufferers have access to the best medication. However, we cannot ignore recommendations from the HSE in ensuring that we spend appropriate amounts on many drugs for rare conditions. Two have been approved so far this year through the system that we are discussing.

The price list sought by the company, according to information that I have, amounts to €600,000 per patient for the first year and €380,000 per patient per annum thereafter.

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