MICHEÁL MARTIN HAS accused Enda Kenny of putting a price on people’s lives by failing to make a drug available to people with a rare blood disorder.
Martin brought up the issue of Soliris in the Dáil again today, noting that not providing it has caused “distress and utter devastation” for patients.
Paroxysmal Nocturnal Haemoglobinuria affects quite a small number of people globally, including about ten people in Ireland. Some 35% of patients will die within five years of diagnosis and 70% will end up with end-stage renal failure.
Alexion Pharma charges €400,000 per patient per year for the drug. In 2010 the HSE entered into an interim agreement with the drug manufacturer and St James’s Hospital to treat ten patients.
The Taoiseach said he is “sorry for the distress caused to patients”, adding that the HSE is negotiating with Alexion Pharma to “provide this drug at a more reasonable cost”.
You can’t put a price on life, I understand that … I would wish that the company would be more reasonable.
Martin said Kenny was, in fact, putting a price on people’s lives.
The Fianna Fáil leader shared the experience of a number of people with the condition, noting that one young woman got the treatment in another EU country within days of arriving there and “will never be in a position to return to Ireland”.
Kenny said it was “very regrettable” that a deal has not been reached with Alexion Pharma to date.
Also during Leaders’ Questions, Independent TD Tom Fleming brought up the subject of home repossessions, calling on Kenny to “act diligently” in addressing the issue.
The Taosieach said that about 110,000 mortgages have renegotiated to date thanks to “the suite of options put in place by Government”.
He said that, in some cases, “people haven’t engaged with the lender at all and that’s not going to sort it out”.
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