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Drug for rare life-threatening blood disorder represents “a chance of hope” - Ó Caoláin

23 January, 2015 - by Caoimhghín Ó Caoláin TD

Sinn Féin Health Spokesperson Caoimhghín Ó Caoláin TD has criticised the HSE’s decision not to fund the drug Soliris (Eculizumab) which is used to treat Paroxysmal Nocturnal Haemoglobinuria (PNH) an extremely rare life-threatening blood disorder.

Deputy Ó Caoláin said;

“This condition causes destruction of red blood cells leading to

kidney failure and requires frequent blood transfusions. A third of patients with the condition die within 5 years. Ten people with the disorder are receiving Soliris under a pilot scheme, but the HSE has refused to fund it for some patients as they feel it is too expensive.

“The Minister has stated in response to a Parliamentary Question by myself that “the better interests of the health service require that we reimburse only the most effective medicines and only at a fair price.” Studies have shown that the medication is effective and that it reduces symptoms and disease complications as well as improving survival to a similar level of those without the condition. The Minister and bodies under his control are then deciding to put a price on the quality and length of life of those with this blood disorder.

“I call on the manufacturers to ensure that the price of the medication is provided at the most reasonable sustainable price. This is a company that has massive profits; it too has a duty to provide this vital medication to PNH sufferers.

“I appreciate that it is an expensive drug but for those with the PNH condition it represents a chance of hope.” concluded Deputy Ó Caoláin.

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