Fianna Fáil Health Spokesperson Billy Kelleher will today bring the plight of Apha One patients to Leinster House as he hosts a briefing, by the Alpha One Foundation, on the need to approve Respreeza, a life-changing therapy for the disease.
Alpha1-proteinase inhibitor deficiency is a lung disorder that causes severe emphysema that requires weekly augmentation therapy. Some 17 patients are currently taking Respreeza as part of the Compassionate Access programme.
“However as things stand, access to the drug will cease at the end of April unless an agreement is reached between the manufacturer and the HSE.
“Many patients who rely on Respreeza for improved quality of life are now facing a very uncertain future.
“Today’s briefing will hear from two patients with Alpha1. One patient who currently has access will tell of the benefits of the drug. The other who does not will brief Oireachtas members on a greatly diminished quality of health and life.
“This drug is necessary and has been proven to be effective. It has been approved by the European Medicines Agency and has also received approval in eight other EU countries. Many feel that without this treatment they might not be alive.
“This requires urgent attention from the Government. Access under the Compassionate Access programme ends in less than three weeks, and patients and their families need to know that the Government is treating their plight with the urgency it deserves,” concluded Kelleher.