Robert Troy (Longford-Westmeath, Fianna Fail) | Oireachtas source

The Minister knows far better than I that this is an extremely rare disease. I believe there are only 40 or 50 sufferers worldwide and this lady is the only one in Ireland. The Minister said: "[d]ecisions to use unlicensed medicines are made by health care professionals and their patients through evaluating the efficacy and safety of the medicine and its potential to achieve better patient outcomes." The person who is treating this lady is recommending the use of this drug. The patient herself is willing to have this drug tested on her, because I understand six other people in the world have been treated by this. Three of the six are fully recovered, in two cases the disease has been left dormant, and in the final case the delay in administering the drug has resulted in death. My office contacted Alexium, the drug company, which has a base here in Dublin, and it advised of a compassionate drugs access scheme. I would love the HSE to accede to the request by consultant neurologist Dr. Siobhan Hutchinson and make the drug available. Failing that, at a minimum, can the HSE and the Minister and his Department support to the drugs company to fund this under the compassionate drugs access scheme?

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