On a constant treadmill of treatment and facing death in the next few years if she does not get access to the only drug that can correct her blood disorder, Mary Gorman says she has been caught in the middle between the department of health and big drug companies.
The Ballinakill lady was diagnosed with an ultra rare blood disorder, Paroxysmal Nocturnal Haemoglobinuria (PNH) in October 12. The following January Mary’s consultant in St James’ Hospital prescribed Ecluzimab - the only drug that can hel, but so far she has not received the medication, due to it’s high cost - nearly €440,000 annually..
“It is expensive, but the key point is that the HSE are already paying for 10 people to receive the drug. It’s the unfairness of why those people are getting the drug and not the rest of us,” Mary said.
She continues: “I’m just pleading with the Government and the HSE to please sort it out. We are caught in the middle between the HSE and the drug company.
“Time is precious, you need to be well enough to get ecluzimab in the first place.”
While there is no cure for PNH, ecluzimab will stop Mary’s red blood cells from prematurely breaking down and take away the side effects.
“Basically there is a factor in my blood that has altered causing my red blood cells to break down too early and pass through my urine,” Mary explains.
“My kidneys are under pressure all the time, your anaemic. I’ve already had acute kidney failure, which is not being managed. But I’m also at a higher risk of clots and I have to have regular heart tests.”
Without treatment, PNH has a life expectancy of just 5-10 years, 35% of sufferers die within five years without treatment. Mary is having regular blood transfusions, but this is not a long term solution for her.
“I need a blood transfusion about every four weeks. I had one last week, so that’s why I’m able for all this this week, but it’s all taking its toll.”
Mary attended the Seanad last week at the invitation of Senator John Whelan, where the Minister for Health, Leo Varadkar was answering questions. However, Mary is not getting her hopes up, that the issue will be resolved shortly.
“I don’t know enough about politics to know if it is going to get sorted. And I don’t want to give myself false hope only to be disappointed.”
Mary added “I’m just asking them to please sort it out.”