The HSE is accusing the manufacturers of an emphysema drug of “persistent manipulation of patients in pursuit of corporate interests” because of its decision to stop administering patient infusions.

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.

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

Irish patients are set to lose access to life-saving lung disease drug Respreza.

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 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 suffering from a rare genetic disease say they are devastated that the HSE has decided not to fund a new treatment for the condition.

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.

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.