Alan Kelly (Tipperary, Labour) | Oireachtas source

As the Minister will be aware, my neighbour, Ms Marion Kelly, passed away on 1 December last year. She was one of the 21 Alpha-1 patients on the clinical trial for Respreeza. In August 2017, the HSE said that it would not provide reimbursements for this drug. There was then a stand-off for a number of months when two patients, including Marion, passed away having been off the drug for six weeks. There have been many discussions and a number of meetings. The Minister has met the family on two occasions at my request, to be fair to him. However, everything is at a stand-still. What is the status of the negotiations with the drug company regarding this important trial? The 19 patients still on the trial, and others who need the drug, need to know.

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