Patricia Ryan (Kildare South, Sinn Fein) | Oireachtas source

On page 46 of the programme for Government, it states there will be an increased focus on rare diseases. In response to a parliamentary question in June relating to the licensing of the drug patisiran for the treatment of amyloidosis, the Minister for Health, Deputy Donnelly, stated that once negotiations between the HSE and the manufacturer are complete, the drug will be formally considered by the HSE drugs group.

Thousands of people have signed an online petition calling on the Minister, Deputy Donnelly, to provide patisiran to patients, including Mr. Pat Tinsley, who is from Newbridge. People living with amyloidosis fear for their lives and although patisiran may be costly, we cannot put a price on life. As late as yesterday I got more paperwork indicating that this is not going to happen any time soon. When will the Taoiseach and the Minister, Deputy Donnelly, do something about this please?

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