Finian McGrath (Dublin North Central, Independent)
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390. To ask the Minister for Health the position regarding access to treatment for paroxysmal nocturnal haemoglobinuria in respect of a person (details supplied) in County Laois; and if he will make a statement on the matter. [45990/14]

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 received an application for the inclusion of Eculizumab in the community drugs schemes. The application was considered in line with the procedures and timescales agreed in 2012 by my Department and the HSE with the Irish Pharmaceutical Healthcare Association.

In accordance with these procedures, the NCPE conducted a pharmacoeconomic evaluation of Eculizumab and concluded that, at a total cost per patient per year of €437,247 and a cumulative gross budget impact over 5 years estimated at €33 million, the therapy did not represent value for money for the treatment of patients in the Irish healthcare setting. In addition, the manufacturer did not include an economic model as part of their submission and failed to demonstrate the cost-effectiveness of this therapy. Consequently, the NCPE was unable to recommend reimbursement of the product under the community drug schemes. The report is available on the NCPE's website.

Many countries have struggled to accept the pricing point put forward by the pharmaceutical company, Alexion Pharma. The HSE has been engaging with Alexion for some time to arrive at a pricing point that would assist it in its efforts to fund this medicine for as many patients as possible. The HSE met the company again in November and is currently considering the outcome of that engagement. It is worth noting that the current Irish list price of €4,557.50 per vial substantially exceeds the list price in the UK (£3,150 sterling).

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. While I appreciate that some may take the view that the taxpayer should re-imburse 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 re-imburse only the most effective medicines and only at a fair price.