Last night, Kitty O’Connor, Alpha One Foundation CEO, said patients would be “completely devastated” and “fearful for the future of their health”. Of the 21 patients, 11 are on the drug for a decade and Ms O’Connor said it’s unknown what the health effects will be.
Respreeza, available to 21 patients who took part in a clinical trial between 2006 and 2014, is for the treatment of alpha-1 antitrypsin deficiency or Alpha-1. That is a protein whose main function is to protect the lungs from infection. Respreeza, manufactured by CSL Behring, replaces the protein that is lacking and slows the progression of emphysema and reduce patients’ number of chest infections and hospital admissions.
When contacted by the Irish Examiner yesterday, CSL Behring — which has provided the drug on a compassionate basis to Irish patients — was not aware the HSE had reached a decision not to reimburse the drug. Its compassionate access programme ends at the end of this month.
A spokesperson said the programme for Respreeza “has been extended several times as we await a final decision from HSE. As for continuing supply past February, we have not yet determined what action we will take and we are hopeful to hear back from the HSE,” she said. However, the HSE has already made its decision. It is now legally obliged to inform the company.
Ms O’Connor said despite requesting meetings with health officials since last December, the first offer of a meeting is next Thursday. That was made after the issue was raised in the Dáil yesterday.