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Dáil
‹ Questions on Promised Legislation

Charlotte Connolly medicines access

Summary

Deputy Kenny raised the plight of Charlotte Connolly, who needs access to the costly drug Soliris on an experimental basis for Degos disease. The Ceann Comhairle said it was more suitable as a Topical Issue, and the Taoiseach noted the drug is not licensed for the condition.

The Government made a commitment on the high cost of medicines in the programme for Government to drive down the cost of drugs and medicines. The reason I raised this issue is because of a lady called Charlotte Connolly. I am not sure many people know her, but she is the only person in Ireland suffering from Degos disease. Her husband was here yesterday. He walked from Mullingar to Dáil Éireann to highlight Charlotte's situation. She wants access to a drug called Soliris on an experimental basis to treat her illness. At present the drug costs €400,000 per year per patient. It is made by a company in the Taoiseach's constituency, Alexion Pharmaceuticals. Will the Taoiseach give a commitment to give Charlotte access to the drug? The Minister for Health should meet the family to clarify the issue.

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It is more suitable to a Topical Issue matter.

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Leo Varadkar The Taoiseach Fine Gael

My understanding is the drug is not licensed for that condition. Perhaps the Minister for Health might be able to answer the Deputy in a different form, through replying to either a parliamentary question or a Topical Issue matter.

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