HSE to provide life-saving Soliris drug despite ‘astronomical’ cost

A life-saving drug which costs about €430,000 per patient annually is to be made available in Ireland, even though the Health Service Executive (HSE) believes its cost is "exorbitant" and "astronomical".

The HSE said Eculizumab, known commercially as Soliris, will be made available to patients with two rare blood diseases “on the basis of clinical need”.

A screening process for patients with paroxysmal nocturnal haemoglobinuria (PNH) and atypical Haemolytic Uraemic (aHUS) will begin immediately.

Eculizumab/Soliris, is one of the most expensive drugs in the world. The HSE said it tried to negotiate a more reasonable price for the drug with the manufacturer, Alexion Pharmaceuticals. However, Alexion refused to provide it at a reasonable and sustainable price, it said.

HSE director general Tony O’Brien said the price was astronomical. “However, 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”.

Mr O’Brien said the impact of the “inordinate” price demanded by Alexion will be felt in other parts of the health service and will impact on the ability to fund home care packages, other medicines and the recruitment of nurses.

He has urged Alexion to reconsider the price and said the HSE will continue to pursue this goal.

Ten Irish patients already receive Soliris under trials or pilot schemes, and at least seven more will now have access to it following the HSE’s decision.

Minister for Health Leo Varadkar, who has come under strong backbench pressure on the issue, last month attacked Alexion’s “aggressive” pricing policy and pointed out the company had been accused of “moral blackmail” in Belgium in a row over the cost of the drug there.

His spokesman said the decision was made by the HSE but “it’s clearly a good decision for the patients as far as he’s concerned”.

Meath East Fine Gael TD Helen McEntee, whose constituent John Duggan has PNH, has welcomed the HSE's decision and said it will allow sufferers to get on with their normal lives.

Mr Duggan, a carpenter from Bellewstown, Co Meath, was diagnosed with PNH in 2010. “I am in shock,” he said. “The news hasn’t sunk in, I had been in the Dáil yesterday and left it (before the news), with my head hanging. Then I got a phone call from Deputy Helen McEntee who told me, I was shocked.”

“Now we don’t have to live our lives in fear of something happening to him, this is better than winning the Lotto,” his wife Aileen said.

The decision was also welcomed by PNH sufferer Mary Gorman, a mother of three from Ballinakill, Co Laois, who was prescribed the drug two years ago. “This is such a rare disease but there are a number of people in Ireland with it and my consultant haematologist prescribed the drug Eculizumab for me in January 2013. It is known to help patients in 85 per cent of cases.”