SUFFERERS of a rare lung condition are fighting for their right to live by trying to get the health service to fund a drug that has been deemed too expensive.
About 97 people in Ireland suffering from lung fibrosis are desperate for the health service to fund the drug Pirfenidone.
It can slow down the progression of the incurable disease.
But the National Centre for Pharmacoeconomics (NCPE) has refused to make Pirfenidone available to people diagnosed with lung fibrosis.
It would cost €32,700 per patient a year, leaving the HSE with a bill of €3.6m and this would not be cost effective, an analysis by the Centre for Pharmacoeconomics decided.
Pamela Martin (54), from Lucan in Dublin, said she was "devastated by the decision".
A manager of a medical centre, she was fit and healthy, swimming 50 lengths every day before work until she was struck with the disease in 2009.
She is on the medicine on a free-trial basis and, although the drug itself is not directly life-saving, she hopes by staying on it she will buy time to allow her stay well enough to get a lung transplant.
"Just 1pc of patients with this disease are lucky enough to get a lung transplant. If this slows down the worsening of my lung function, I will have a better chance of making it to the operation, which is my only hope," she added.
Meanwhile, father-of-one Pat Casey (57) said: "It truly is a wonder drug and it can make all the difference for sufferers.
"I just don't understand why the Government can't fund the drug when they know it is going to help people avoid, if at all possible, reaching my stage with the disease."
Pat, who lives at Weaver's Point in Crosshaven, Co Cork, was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in May 2009. He was placed on the lung transplant list in February 2010 and, four times since then has been alerted for a possible transplant. On each occasion the organ donation has gone to another sufferer and Pat's transplant wait continued.
"Like a lot of other people waiting for organ transplants I just have to go on hoping and praying," he said.
The call on the State to fund the drug is being backed by Mater hospital respiratory consultant Prof Jim Egan, who told the Irish Independent: "This new therapy is critically important for the treatment of this significant condition."
The Centre for Pharmacoeconomics, which advises the HSE, said it still lacked long-term data on the drug – but suggested that some system be looked at which would reduce the costs.
A spokeswoman for the HSE told the Irish Independent it was "still in negotiations with the makers of the drug" and it would be inappropriate to comment further while negotiations are ongoing.