The HSE has agreed to cover the administration costs of a therapy known to slow the progression of genetic emphysema — after a second patient with the condition died.

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 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

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

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.

Patients with severe lung disease who have been receiving a life-changing drug have pleaded for help as supply of the medication is to be cut off within weeks.

Paying up-front for medical research would encourage innovation and end costly monopolies by allowing generic competition to flourish, according to Diarmaid McDonald and Dr Kieran Harkin

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.

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.