Patients with genetic emphysema should have access restored, by the end of next week, to a drug withheld for more than a month in a row over who should pay to administer it.

A number of patients with genetic emphysema who are unable to access vital medicine because of a row over administration costs are at major risk of hospitalisation, their doctor has warned.

Patients with genetic emphysema are calling for an end to the current stand-off on what they say is a life-changing drug.

Patients in receipt of a drug that slows the progression of genetic emphysema do not know when they will receive their next dose because of confusion over who is to administer the drug.

Patients set to lose access to a drug the State has refused to reimburse have been granted a six-month reprieve as the manufacturer says it will continue to supply it free of charge.

John Hannan has been a ‘guinea pig’ for Respreeza for 11 years. Now, due to the reported €84k-a-year cost, he faces losing access to a drug that’s proven a lifesaver. He talks to Health Correspondent Catherine Shanahan

The decision not to reimburse people for a drug shown to slow the progress of genetic emphysema has been formally communicated by the HSE to the foundation representing patients affected.

Ten years ago, John Hannon could hardly walk from his home to his car. Yesterday he travelled to Dublin to demand that a drug that transformed his life continues to be available.

Ten years ago, John Hannon could hardly walk from his home to his car. Yesterday he travelled to Dublin to demand that a drug that transformed his life continues to be available.