Cork South West TD, Margaret Murphy O’Mahony has said that the National Centre for Pharmaeconomics should review its decision to not recommend Respreeza for reimbursement is deeply disappointing to people living with emphysema in adults with severe alpha1-proteinase inhibitor deficiency.

“Alpha1-proteinase inhibitor deficiency is a lung disorder that causes severe emphysema that requires weekly augmentation therapy. A number of constituents in Cork have been in touch with me and they are significantly upset at this decision,” said the Fianna Fáil TD.

“Many patients are currently taking Respreeza as part of the Compassionate Access programme.However, it has been confirmed that access to the drug will cease at the end of January 2017.”

One patient has been using Respreeza for over seven years as part of the Compassionate Access programme. Is the NCPE really saying that after taking a drug for seven years, which has dramatically improved her quality of life, she should stop taking it?

“I am deeply concerned that decisions like this are being based on the cost-effectiveness rather than the efficacy of orphan drugs such as Respreeza.”

“Patients who rely on Respreeza for improved quality of life should not be left with such an uncertain future. The Minister should, as a matter of urgency, ensure that this drug is made available to all patients,” concluded Murphy O’Mahony.