Fergus O'Dowd (Louth, Fine Gael)
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661. To ask the Minister for Health if he will make the drug Soliris (eculizumab) available in respect of a person (details supplied) who is suffering from the ultra rare and life threatening blood disorder paroxysmal nocturnal haemoglobinuria; and if he will make a statement on the matter. [1343/15]

Kathleen Lynch (Cork North Central, Labour)
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Decisions on which medicines are reimbursed by the taxpayer, are not political or ministerial decisions. These are made on objective, scientific and economic grounds by the Health Service Executive (HSE) and often on the advice of the National Centre for Pharmacoeconomics.

The HSE has been engaging with the manufacturer, Alexion Pharma, for some time in relation to the drug Eculizumab. At a cost of over €400,000 per patient per annum Eculizumab is one of the most expensive drugs in the world and many countries have struggled to accept the pricing point put forward by Alexion.

The engagement with the pharmaceutical company has now been concluded and the HSE is considering the outcome of that engagement. It is regrettable that to date the company has not been able to provide this drug at a more sustainable price to the HSE to reflect the clinical evidence.

I would like to assure the Deputy that the Department, and the HSE, fully understand the concerns of patients regarding the availability of this drug and every effort is being made to seek a satisfactory outcome to this issue. While I appreciate that some may take the view that the taxpayer should reimburse every licensed medicine for whatever price the drug company demands, I hope the Deputy will appreciate that the better interests of the health service require that we reimburse only the most effective medicines and only at a fair price.