HSE in U-turn on availability of €430k life-saving drug

The HSE has back-tracked on refusing an expensive drug to patients after the Taoiseach was accused of putting money ahead of patients’ lives.

In a major U-turn, the life-saving Soliris drug will be made available on clinical need to people with a rare blood disorder at a cost of €430,000 a year per patient.

A small number of people in Ireland are affected by paroxysmal nocturnal haemoglobinuria (PNH) disorder, which kills about one third of those with the condition within five years of detection.

A pilot scheme set-up in 2010 included 10 patients, and the U-turn by the HSE is expected to see the drug made available to some six or seven extra people.

Health chiefs had been locked in talks with drug manufacturer Alexion over the costs after Health Minister Leo Varadkar attacked the company’s “aggressive” pricing policy.

One patient who was refused the drug, John Duggan, expressed relief: “It’s a life changer, it means I will have a better quality of life.”

The HSE warned that the move meant other services, such as home-care packages would be affected by switching resources to paying for the “astronomical” costs of the drug.

HSE director general Tony O’Brien said the drug, also known as Eculizumab, now needed to be made available despite there being no price reduction.

“The HSE did not want the patients awaiting access to Eculizumab caught in the crossfire between a drug manufacturer attempting to enhance its corporate profits at all costs, versus the HSE attempting to protect scarce money for delivering health services,” he said.

The climbdown came after Mr Kenny was accused in the Dáil of hypocrisy for insisting you could not put a price on life while criticising the cost of the lifesaving drug being refused to some Irish patients.

Fianna Fáil leader Micheál Martin warned the Taoiseach he had put a price on people’s lives by not allowing the drug to be more available.

Mr Kenny said: “The cost is €400,000 per annum but we cannot put a price on life. I would wish that the company would be more reasonable.”

Mr Martin hit back saying putting a price on people’s lives was exactly what the Taoiseach was doing.

“We are playing with people’s lives and time is running out. The Taoiseach said no one can put a price on a life.

“The Taoiseach has done so,” Mr Martin said.

The Fianna Fáil leader said he knew of one woman with PNH who had gone to another EU state to get the drug on their health service within five days.

The Taoiseach offered to ring the female sufferer mentioned by Mr Martin if he supplied her telephone number.

“I would wish that the pharmaceutical company would be more reasonable dealing with such a small group of people,” said Mr Kenny.