21 patients in limbo as talks on funding life-saving drug Respreza break down
Irish patients are set to lose access to life-saving lung disease drug Respreza.
Talks on funding Respreza have collapsed between the HSE and CSL Behring, the pharmaceutical company which makes it.
Twenty-one people suffering from a genetic lung disease called Alpha 1 have been using it for more than 11 years.
They were told last Friday that they will lose access to a vital drug called Respreeza at the end of the month.
Patient Gerry Finnerty from Kinsealy in North Dublin, who is 59, said: "Nobody knows what's going to happen to (us).
"There's no drug there even to ease you off - there's just a striaght trap door: 'There: it's done'."
In a statement last week CSL Behring said: “We remain committed to AATD research to improve the quality of life of people living with the condition. Based on this commitment, we are currently in discussion with health authorities in both the US and Europe to finalise a randomised, non-placebo controlled study design which seeks to demonstrate the long-term safety and efficacy of Respreeza.
“CSL Behring is evaluating clinical sites in Ireland which may then be offered the opportunity to recruit severe AATD patients.”
