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Patients win battle to secure €430k drug

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John and Aileen Duggan from Bellewstown, Co Meath who launched an online petition to lobby the Government and the HSE to fund the treatment John requires for the terminal blood condition PNH.

John and Aileen Duggan from Bellewstown, Co Meath who launched an online petition to lobby the Government and the HSE to fund the treatment John requires for the terminal blood condition PNH.

John and Aileen Duggan from Bellewstown, Co Meath who launched an online petition to lobby the Government and the HSE to fund the treatment John requires for the terminal blood condition PNH.

A GROUP of patients have won their battle to secure a potentially life-saving drug which will cost €430,000 a year per person.

But the cost of the drug Soliris is "astronomical", HSE chief Tony O' Brien warned.

He warned the cost will mean funding will have to come from other services, including home care packages and the recruitment of nurses.

The drug is used to treat sufferers of rare blood conditions Paroxysmal Nocturnal Hemoglobinuria (PNH) and atypical Haemolytic Uraemic (aHUS),

Despite failing to secure a reduction in price from the manufacturer Alexion, it will be made available to patients based on clinical need.

Doctors treating the patients can apply to the HSE's Medicines Management Programme (MMP) to begin screening them to see if they will benefit.

Regular reviews to determine the effectiveness of the treatment and outcomes for patients will also be undertaken.

John Duggan, of Bellewstown in Meath, who suffers from PNH, said last night the decision was "life changing".

Mr Duggan said it will allow him to resume a normal life.

His wife, Aideen, had spoken of her fears that she would get a call at some time that he had become seriously ill.

Mr Duggan was first diagnosed in 2010 and has had to have blood transfusions every six weeks.

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