Bellewstown man starts life saving drug treatment

A 33 year-old Bellewstown man who lived with the daily fear that a sudden heart attack or blood clot could end his life, is looking forward to a long and healthy life this week, having started treatment with a revolutionary new drug last Friday.
Following an intense lobbying campagn by family and friends earlier this year, John Duggan now has access to the life-saving drug Soliris and began treatment last Friday in Beaumont Hospital.
His wife Aileen said they were both nervous, but excited when they arrived at the Beaumont Hospital for the treatment on Friday, but are delighted and relieved that treatment has started and are grateful to everyone who supported them in their fight to get the necessary medication.
John has the condition Paroxysmal Nocturnal Hemoglobinuria (PNH).
PNH causes the destruction of the blood cells, leading to anaemia, fatigue, muscle pains and a high risk of blood clots and kidney failure.
A third of patients die within five years. Or they used to, until Soliris (eculizumab), a medication which controls the breakdown of red blood cells, came on the market. The drug is a game-changer and allows patients to live relatively normal lives.
John was prescribed the drug Soliris by his medical team and was told it would allow him live a life free from the need for regular blood transfusions, taking daily medication and the persistent risk of having a blood clot which could strike at any time.
However the HSE had refused to fund the drug as it costs around €437,000 per patient per year.
Following intense lobbying and a petition, which gained widespread support, the HSE confirmed last February that John would have access to the drug.
“He started the treatment on Friday and will receive the drug every Friday for four weeks,” his wife Aileen explains.
“Then he will have the treatment every second Friday for the rest of his life.
“Since he was told he would receive the drug on 4th February last , he underwent a lot of test and preparation for the treatment.
“We were very nervous on Friday, we couldn’t believe it was really going to happen at last,” she said.
The administration of the drug took 45 minutes, but John had to remain in hospital for several hours for monitoring.
“He has been feeling very well since. He had a headache, which was to be expected, but they say the first two treatments are the hardest and then the body adapts,” she says.
“We have a totally different outlook now, He is back at work, he is feeling good and there has been no adverse reaction. We can look forward to a normal life.
“We would like to thank everyone who helped us achieve this,. Without the support of the public, things would be very different,” Aileen points out
Prior to his treatment, John was very concerned for the future and feared organ failure, having to go on dialysis or suffering a severe blood clot.
He needed need a blood transfusion every six to 12 weeks and got very fatigued.
John’s disease had classed as a terminal illness, but now all that has changed as he looks forward to a bright future.