THE HSE HAS decided to extend access to a life-saving but expensive drug for patients suffering from a rare blood disorder, saying today it does not want patients to get caught in the crossfire of its negotiations with manufacturers.
The drug Soliris, or Eculizumab, is used to treat Paroxysmal Nocturnal Haemoglobinuria (PNH), which affects quite a small number of people globally. However 35% of patients will die within five years and 70% will end up with end-stage renal failure. It currently costs more than €400,000 per patient each year to treat the disorder in Ireland.
Four years ago, the HSE had made the drug available to ten patients at St James’ Hospital after entering into an agreement with drug manufacturers, Alexion Pharma. However no new patients have been given access to the drug since then.
Today, it said it has taken the decision to extend access to sufferers of PNH as well as atypical Haemolytic Uraemic syndrome, another rare disease.
Speaking to RTÉ’s Drivetime this evening, John Duggan, who is suffers from PNH, said he was “over the moon” when he heard the news.
Since his diagnosis, he has been living in fear of blood clots, heart attacks and other complications that come with the disorder.
“I’ve only been married three-and-a-half years, I’m only starting off my life,” he said.
While he did agree the drug is too expensive, he said the manufacturers are only supplying this drug to a small number of people across the world as it is a rare disease.
“We don’t really know what development has gone into this drug.”
Any price is worth paying though, as far as he is concerned. As he pointed out: “It’s going to save my life”.
‘Astronomical’
“The HSE had attempted to negotiate a more reasonable cost for this important drug. However, the drug manufacturer concerned refused, and continues to refuse, to provide Eculizumab at a reasonable and sustainable price,” the HSE said in a strongly worded statement this afternoon.
It’s Director General Tony O’Brien said the €430,000 cost per patient is “an astronomical price to pay for any drug”.
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.
Today, Micheál Martin accused Enda Kenny of putting a price on people’s lives by failing to make the drug available. He asked the Taoiseach “has he any shame at all?”.
Kenny said ht was sorry for the distress caused to patients, adding “you can’t put a price on life”.
Felt elsewhere
The HSE said demands on health services continue and the high price demanded for this drug will “inevitably, over time, be felt in other parts of the health services and will impact on the ability to fund important other services developments”. It urged the manufacturer to reconsider the price that is charged.
A screening process for the drug will start immediately and treating clinicians can apply to the HSE’s Medicines Management Programme (MMP) to discuss it. Due to the high costs, provision will be on the basis of clinical need.
During this process, the HSE said it will continue to pursue a more reasonable price for this medicine.
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