Paul Daly (Fianna Fail) | Oireachtas source

I appreciate the attendance of the Minister of State, Deputy Helen McEntee, to answer my queries. The issue has been raised previously through a Dáil parliamentary question. The person in question, Charlotte Connolly from Mullingar, has been diagnosed with a rare blood disorder known as Degos.She is the only person in Ireland who has been diagnosed with the disease. There is a drug available, Soliris, which is produced by Alexion Pharma and which has been used in similar cases in America with a high degree of success. The Connolly family requests that she be gain access to this drug. In previous answers to parliamentary questions in the Dáil on this matter it was stated the drug was unlicensed for the treatment of Degos disease and that it was exorbitantly expensive. When Alexion Pharma was approached, it suggested she could gain access to the drug under the compassionate drug access scheme. When this issue was raised in the Dáil by Deputy Robert Troy, the then Minister for Health, Deputy Leo Varadkar, said he was unaware of such a scheme. Has the new Minister updated himself on it? Will he inform me of its availability and how it could be used? The drug is unlicensed for the treatment of Degos disease, but it has been recommended for use by the consultant neurologist at St. James's Hospital. Will the Minister progress the issue in a positive manner?

With this matter on my mind this morning, I was taken aback emotionally when entering Leinster House. Last week I could not get in because there were many people outside protesting and lobbying on behalf of the Irish hare. This morning there was no one outside for Charlotte Connolly. She is a human being and the eventual outcome of her condition is death. We have many discussions about various issues in the House. Yesterday I felt more comfortable in my role as agriculture spokesperson discussing the issue of farm safety and the potential saving of lives by taking action and spending money. Today I can actually identify an individual human being whose life could be saved by taking action. I hope I will not receive the copy-and-paste response received previously. Declan Connolly, Charlotte's husband, has written to the Minister since his appointment. He received an acknowledgement of just one letter and no response to the second. If it is not possible for the Minister to give me the answer that I would so love to hear this morning, could he, at least, meet the Connollys to progress the issue further down the line to come up with some solution?