Patients with genetic emphysema, caught up in a standoff over who should pay to administer a vital therapy, mounted a vigil outside HSE HQ yesterday as it met with the drug’s manufacturer.

Patients who suffer from a chronic lung condition, Alpha 1, were told last Friday that they will lose access to a vital drug called Respreeza at the end of the month.

“They’ve pulled the plug on us. It’s shattering news.”

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.