Patient urges HSE to agree deal for life-prolonging drug

A man whose survival depends on a double lung transplant has called on the HSE to renegotiate the price of a life-prolonging drug that has been branded too expensive to use.

Last month, the National Centre for Pharmacoeconomics (NCPE) recommended that Pirfenidone, the first licensed treatment for a rare and fatal lung disease, was “not cost-effective for the treatment of patients with mild to moderate idiopathic pulmonary fibrosis [IPF]”.

Pat Casey, 55, from Cross- haven, Co Cork, who has IPF, said it was a “wonder drug” that people living in Ireland should be entitled to benefit from: “I know a couple of people with IPF who were given Pirfenidone as part of a drug trial here and the results were fantastic. It buys you time if you are waiting for a transplant.”

The Irish Thoracic Society, which represents those involved in the care of people with chronic or acute respiratory disease, has said the drug, approved by the European Medicines Agency in February 2011, should be offered to people diagnosed with mild to moderate IPF, within certain parameters.

The Irish Lung Fibrosis Association (ILFA), representing people with lung fibrosis, said it was “disappointed, greatly saddened and dissatisfied” with the NCPE recommendation.

“The news that the only drug treatment option available to those facing a debilitating illness will be withheld on financial grounds is simply devastating,” the ILFA said.

The association has called on the HSE to “urgently review the grounds for this decision and to actively engage with the drug manufacturers to make Pirfenidone available to IPF patients in Ireland”. It is available in England and Wales.

A spokesperson for the HSE said the NCPE recommendation was not binding, and that the HSE is currently in negotiations with the manufacturer to reduce the price. “It is not cost effective at the current proposed price,” she said.

According to the NCPE cost-benefit analysis, the drug would cost €32,700 per patient per year.

As the price negotiations continue, Pat Casey, who needs oxygen around the clock, has called on the public to support a charity cycle organised by friends to highlight the need for this drug and also the need for greater organ donor awareness. Pat himself would not benefit from Pirfenidone because of the advanced stage of his disease.

The cycle takes place on Apr 20 and 21, leaving from the Ford Centre in Cork’s Forge Hill and heading for Limerick via Tipperary. Collection points are being organised en route.

Pirfenidone has been shown to have a modest but measurable effect on slowing the decline in lung function in patients with mild to moderate IPF.