Wednesday 20 September 2017

Taoiseach: I'll talk to sufferer of rare blood disease... if Micheal Martin gives me the number

Taoiseach Enda Kenny Photo: Frank Mc Grath
Taoiseach Enda Kenny Photo: Frank Mc Grath

Political Correspondent

THE Government was today accused of "playing hardball" with the lives of people suffering fram a debilitating rare blood disease.

Paroxysmal Nocturnal Haemoglobinuria (PNH) is a very rare life-threatening blood disorder that kills one in three within five years.

Fianna Fail leader, Micheal Martin, said the health authorities were denying patients access to the drug Soliris - which costs hundreds of thousands of euro - purely on grounds of costs.

Mr Martin said 10 PNH sufferers had been given the drug under a pilot scheme operated at St James's Hospital in Dublin - but other sufferers were left waiting and he named three people.

"You're playing with people's lives and time is running out," Mr Martin said.

Read more: More than 15,000 support man's plea to the HSE for life-saving drug

Mr Martin said he knew of one woman suffering from PNH who went to another EU country and got the drug on the public health system within five days.

The Taoiseach said he was very conscious that this was a deeply personal problem and the health authorities are working to find remedies.

Mr Kenny offered to contact one of the sufferers personally by phone - if Mr Martin would give him the phone number.

The Taoiseach said he wished the pharmaceutical firm involved, Alexion Pharma, would be more reasonable in their pricing which ran to €400,000 per person.

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

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