Lucas Maciesza, 26, who has a rare blood disorder, continues to fight for treatment, even after his first round with the expensive drug seemed successful.
The Ontario Ministry of Health appears to be reluctant to pay for Soliris, a new and expensive drug, and one that would be required regularly over his lifetime to keep Maciesza healthy.
Currently, Maciesza is in good spirits and relatively good health, after doctors at London's Health Sciences Centre decided to pay for two treatments with the drug.
The treatment went so well that after weeks in hospital, he was able to return home, but he says "It's good feeling good, but I'm still a bit anxious and nervous as to what happens next. 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."
He has a condition called Paroxysmal Nocturnal Haemoglobinuria, or PNH, which destroys red blood cells and causes internal bleeding, blood clots and kidney damage.
Now time is running out again, with the next treatment due Tuesday, Dec. 7.
Rick Maciesza, Lucas' father, says "had the hospital not stepped in he would not be here today."
In an email statement to CTV, Ontario Health Minister Deb Matthews says "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.:
She goes on to say "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."
According to father and son, the province already provides Soliris to one patient on compassionate grounds. The drug could cost up to $500,000 per year.
The younger Maciesza says, "I'm begging, please, I have health professionals telling me this is what I'm supposed to be doing, this is what's going to help me. It's been administered, it has helped me, it's making a difference."
His father adds, "Life sustaining therapy should be a number one priority on our health budget list, period."
He believes his son wouldn't be alive today without the last treatment, and the family fears what could happen without the government's health.
