Two years after she was first prescribed Eculizumab for a life threatening blood disorder, Mary Gorman has finally won her battle with the to receive the medication.
The HSE announced last Wednesday that they had decided to extend access to the drug for sufferers of Paroyysmal Nocturnal Hemoglobinuria (PNH) and atypical Haemolytic Uraemic (aHUS).
Emotionally and mentally exhausted from the events of the week and her illness, the Ballinakill woman was too weak to speak to the Leinster Express last week. Her sister Catherine O’Connor, said Mary was very relieved the HSE had changed their mind.
“Mary is very relieved the HSE have decided to fund the treatment and she is looking forward to getting started.
“We haven’t heard from the HSE yet so we don’t know what the next steps are but we are hoping that the treatment starts sooner rather than later.”
Catherine added: “The cynic in me won’t believe it until I see it.”
Mary was forced to seek the public’s support last year.
“It was a very difficult decision to go public,” Catherine explains. She had been writing to HSE, public representatives had been raising it on her behalf , but it was the same standard answer. It was so frustrating, she was getting nowhere.”
“Mary is numb at the minute, she is due a transfusion again next week and the excitement of the news this week has really just taken it out of her. But it’s a great reason to be completely flapped,” she said.
In their statement, the HSE said the screening process would begin immediately.
They said they tried to negotiate a more reasonable rate for the drug, how the manufacturer is refusing. The HSE said they will continue to persue a more reasonable price for the medication.
Sen John Whelan said it was a great relief for Mary, but he urged the Minister for Health to ensure that all medications are available to people who need them on the basis of their diagnosis and not cost.
“We should learn from Mary’s case and follow up to ensure that all drugs and medicines are provided to those who need them on the basis of their medical diagnosis and not on the basis of cost or otherwise. I am urging Minister Varadkar to proceed with special legislation to address this and the exorbitant cost of medicines in Ireland compared to other EU countries.”
Minister for Foreign Affairs, Charlie Flanagan, said the HSE needed to engage with Alexion to ensure the drugs are provided as soon as possible.
“This has been a long and difficult process for Mary and her family and supporters and I am pleased that this decision will allow her to fully access the treatment she requires. I am anxious that the HSE continues to engage constructively with Alexion and other pharmaceutical companies to ensure that patients can access the drugs they need as quickly as possible.”