Tuesday 12 December 2017

More than 15,000 support man's plea to the HSE for life-saving drug

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.
Independent.ie Newsdesk

Independent.ie Newsdesk

More than 15,000 people have pledged their support for a man who is fighting the HSE for a life-saving drug to treat his rare life-threatening blood condition.

John Duggan (33) suffers from Paroxysmal Nocturnal Haemoglobinuria (PNH), a very rare life-threatening blood disorder that kills one in three within five years.

Some 15,657 supporters have signed a petition to urge the HSE to get the drug that John has been prescribed and needs.

John, a carpenter from Bellewstown, Co Meath, was first diagnosed with PNH in 2010. He now requires a blood transfusion every six weeks.

Although the condition is classed as a "terminal illness", John has not been able to access the drug Soliris (Eculizumab), which has been prescribed by his medical team.

Ten other people with the same condition are receiving Soliris under a pilot scheme, but the HSE has refused to fund it for John as it costs around €400,000 each year.

The HSE has said every effort was being made to reach agreement with the manufacturers of Eculizumab on a "reasonable price" for this drug.

"You never know when you're going to get a call and when something is going to happen, so you're living in fear continuously," said Aileen.

"They are effectively putting a price on John's life," Aileen added.

Read More: Couple appeal for HSE to fund vital treatment

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