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'It's a life changer' - HSE to give cutting-edge drug to rare blood disorder patients

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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 small group of patients have won their battle to get a cutting-edge, potentially life-saving drug costing €434,000 per person a year.

The HSE has relented to pressure to give the drug Soliris to patients who are deemed in clinical need.

Around 17 patients  would benefit from the drug which treats  diseases Paroxysmal Nocturnal Hemoglobinuria (PNH) and atypical Haemolytic Uraemic (aHUS).The  conditions  cause the destruction of blood cells, leading to anaemia , fatigue, blood clots and kidney failure.

It can lead to a death in five years for some patients but the new drug can allow them have relatively normal lives.

John Duggan (33) suffers from Paroxysmal Nocturnal Haemoglobinuria (PNH) and was first diagnosed with PNH in 2010. He now requires a blood transfusion every six weeks.

Speaking on the Six:One news about the decision, he said:

“They were battling hard to get me on to this drug, but they (HSE) were saying no and that it was too expensive.

“It’s a life changer. That’s exactly what it is. It just means I’m going to have a total better quality of life and do things I haven’t been able to do for a long time.

“I’m still in shock that it was passed today. I want to thank everyone for all they’ve done in the last three or four weeks to get this campaign to where it is."

Welcoming the decision Deputy Jerry Buttimer, chair of the  Oireachtas Committee on Health and Children said the move by the HSE to extend access to Eculizumab (Soliris) will come as a relief to people  who desperately need it.

“The decision of the HSE to extend access to Eculizumab to people diagnosed with PNH and aHUS will come as a relief.  There have been protracted efforts by patients, their representatives and public representatives to get the HSE to make this decision.  I would like to thank the HSE for taking this decision which will make a huge difference to the day to day lives of people with these rare diseases.

“Everyone’s efforts to bring about this decision again bring into focus the issue of the cost of medicines.  Eculizumab costs €430,000 per patient per year and efforts to get the manufacture to reduce its price were unsuccessful.  We need to examine closely how our drug purchasing model work and what can be done to reduce the costs to taxpayers.  Doing this can have two effects, it can save money and it can allow resources to diverted to other areas of the health service.

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“Over the next few months the health committee will be examining these broader policy issues.  I hope that this will allow us to ask why drug companies can in effect hold the HSE and Department of Health to ransom.”


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