Patients with genetic emphysema have been assured of continued access to the only drug shown to slow its progression until at least the end of the year.

Lorraine Doherty hopes other sufferers of genetic emphysema won’t die, as her mother did, last year, because of the HSE’s refusal to pay for drugs, writes Health Correspondent Catherine Shanahan

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.

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.