The Minister for Health has strongly attacked a leading US pharmaceutical company over its “aggressive” pricing policy.
Leo Varadkar said it was regrettable that Alexion Pharmaceuticals had failed to date to provide a potentially life-saving drug to Irish patients at a more sustainable price that reflected the clinical evidence.
Eculizumab, sold commercially by Alexion as Soliris, is one of the most expensive drugs in the world. In Ireland, it would cost the HSE €437,000 per patient to supply the drug to people with a rare blood disorder, or €33 million over five years.
Ten Irish patients receive Soliris under trials or pilot schemes, but Alexion and the HSE have been unable to agree a price for supplying the drug to a further seven patients with paroxysmal nocturnal haemoglobinuria (PNH).
PNH is an extremely rare blood disorder that causes the destruction of the blood cells, leading to anaemia, fatigue, blood clots and kidney failure. Normally, a third of patients die within five years, but Soliris allows patients to live relatively normal lives.
Mr Varadkar was speaking in the Seanad, where Senators John Whelan and Thomas Byrne called on him to make the treatment available to all PNH sufferers. He suggested the Senators should put pressure on Alexion by calling in its representatives to appear before the Oireachtas health committee.
He pointed out that the company had sales of €1.15 billion last year and recorded profits of €253 million. Its chief executive is paid €12 million a year.
In Belgium, Mr Varadkar said, politicians had accused the company of "moral blackmail" when a newspaper discovered that a PR company was behind a campaign by the parents of a nine-year-old boy for access to the drug. The parents believed they were dealing with a patient organisation, he said.
Alexion said it had not yet received a response to a proposal before the HSE since November but looked forward to reaching agreement so Irish patients needing Solaris got access.
