The HSE is considering the outcome of talks with a company on the purchase of a drug to treat paroxysmal nocturnal haemoglobinuria (PHN), Minister for Health Leo Varadkar has told the Seanad.

He said the drug, eculizumab, or Soliris to give it its brand name, was indicated for the treatment of the illness.

It is one of the most expensive drugs in the world, Mr Varadkar added.

The HSE, he said, had been engaging with the company, Alexion Pharma, for some time to arrive at a price that would assist it in its desire to fund the medicine for as many patients as possible within available resources.

“It is regrettable that to date the company has not been able to provide this drug at a more sustainable price to the HSE to reflect the clinical evidence,’’ Mr Varadkar added.

“Nonetheless, the door is not closed to a new medicine and it remains open to the company to come back with new evidence, a new price, or both.’’

The Minister was replying to Senator Thomas Byrne (FF) and Senator John Whelan (Labour) who highlighted the cases of two people suffering from the illness.

Transfusions

Mr Byrne said

John Duggan

,

Bellewstown

, Co Meath, and been diagnosed with PHN in 2010. He understood, he said, that one-third of patients died within five years.

“In John’s case, PHN is resulting in him having blood transfusions ever six weeks or so; he is lethargic and greatly fears blood clots,’’ he added.

Mr Whelan said Mary Gorman, Ballinakill, Co Laois, had suffered in silence for the past two years, "in what has turned out to be a vain hope that the HSE would address her medication and her treatment, as recommended by her consultant and haematology teams from St James's hospital, whose reputation is second-to-none in the world''.