Local familys plea to hse to fund 437000 per year drug

A young Bellewstown man with a life-threatening condition is facing an uncertain future as the HSE has refused to fund drugs which would allow him to lead a relatively normal life.
John Duggan is 33 years-old and suffers from the rare and life-threatening blood disorder, Paroxysmal Nocturnal Haemoglobinuria (PNH). His family is angry as they claim the HSE seems to be “putting a price” on his life.
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. He 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, it costs around €437,000 per patient per year.
His wife, Aileen, explained that this drug is essential to improve John’s life expectancy and quality of life with his medical team suggesting that his quality of life could be improved five times over if he were to receive the drug.
“Despite 10 people with the same condition in Ireland receiving the drug, the HSE has refused to fund the drug for John and are denying him the necessary prescribed treatment that he needs due to the high cost of the drug. They are effectively putting a price on John’s life,” she said.
John said he is very concerned for the future and fears organ failure, having to go on dialysis or suffering a severe blood clot, both of which could cost the State much more.
“At the moment, I have to go to hospital every three or four weeks to have my bloods checked and need a transfusion every six to 12 weeks. I get very fatigued, but I try to struggle on and have never been a burden on the State as I am self-employed,” he said.
“Without this drug, my prognosis is bleak and it makes me angry. I cannot get the drugs I need. If I was diagnosed with cancer, I would straight away get the drugs I need,” he said.
“I’m afraid for the future.”
His wife Aileen said her husband’s only option is Soliris. “This is the only known drug to effectively treat and manage the symptoms of PNH and prolong life expectancy and John needs it now. John has been waiting over three years for this drug and time is not on his side,” she added. “The risk of blood clots get higher as time goes on.
“It is all down to money. John didn’t choose this illness, so it is unfair that the HSE won’t give him any hope.”
She said his condition has deteriorated over time. At one point, he only needed transfusions every six months. Now he needs them every eight weeks.
“We are worried sick. John’s disease is classed as a terminal illness. It has been a terrible time for the family,” Aileen added.
She is calling on the public to support a petition his family and friends have set up calling on the HSE to fund his treatment and to lobby their local TDs and government representatives to make it clear to decision-makers in the HSE that they need to grant John access to the treatment that he needs.
A spokesperson for the HSE said Soliris is one of the most expensive medicines in the world. “It is not approved for reimbursement in Ireland and has been the subject of discussions across many reimbursement agencies worldwide, all of whom have struggled with reconciling the cost put forward for the medicine with the robustness of the clinical evidence,” the spokeserson said.
“In 2010, the HSE agreed to fund 10 patients as part of a pilot programme with an evaluation of the impact. Discussions are ongoing with Alexion, the manufacturer, to try to agree a mutually acceptable successor agreement to the 2010 Pilot ‘Access with Evidence’ Programme. The HSE can confirm that all 10 patients remain on the pilot project. The cost for the drug is approximately €437,000 per patient per year,” she said.
Aileen and John’s family and friends have started a petition to try and convince the HSE to fund this medication for him. It can be accessed at www.change.org and search for John Duggan.