Mount Forest man wins funding battle for life-saving drug
Provincial governments across Canada have approved funding for a drug to help people suffering from a rare blood disorder.
The drug, called Soliris, has provided relief for people with paroxysmal nocturnal haemoglobinuria (or PNH). The disorder causes the immune system to attack red blood cells, causing internal bleeding, blood clots and severe kidney damage.
Fewer than 90 Canadians have been diagnosed with PNH.
In November 2010, a 26-year old Mount Forest man named Lucas Maciesza, who suffers from PNH, was near death at London Health Sciences when he received temporary funding for Soliris.
Maciesza began his treatment at in December of that year, and his condition improved. "It weighs heavily on my thoughts and my conscience, simply for the fact that, I'm feeling this good now and I want to continue feeling this good and live a little longer."
However continuing treatment came at a price. Soliris costs $500,000 a year. And patients like Maciesza would need to take Soliris regularly over their lifetime to stay healthy. Until now, the drug didn't qualify for government funding.
In an email statement to CTV in December, Ontario Health Minister Deb Matthews said: "When it comes to deciding what drugs are paid for by the public, we work very hard to find the right balance between being compassionate and being responsible. Ontario has one of the most generous drug programs in Canada, and relies on the advice of medical experts, not politicians, when making decisions about what drugs to cover."
In March, Maciesza went to Queen's Park. He made a desperate plea to politicians to reverse their position on Soliris and approve funding.
On Friday, it was approved by every province in Canada.
In a statement, Maciesza expressed his relief. "Receiving access to Soliris means we can stop living in fear of dying from a blood clot or organ failure, and start living again and planning for our future," he said. "I can't begin to express my gratitude to the Ontario government for coming to my rescue at my family's greatest time of need, and to all the incredible people who supported us along the way."