Patient fears over potential loss access to emphysema drug

The HSE’s drugs group has recommended that the State not reimburse the cost of the only known drug to treat the underlying cause of emphysema. The decision means 21 patients in receipt of Respreeza face no longer having access from the end of this month.

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.