There is only one treatment for PNH, a rare blood disease, Soliris. However the drug is not covered by Ontario's provincial drug program.
For Lucas Maciesza, 25, today could mean death or the chance for him to have a normal life expectancy. Treatment with Soliris prevents the premature destruction of red blood cells and thereby significantly reducing life-threatening complications, such as blood clots (strokes, heart attacks) and kidney failure.
The drug was approved almost two years ago by Health Canada but provincial drug programs are not funding this life-saving treatment. For some patients in Canada, it's already too late.
Joanne Koskie, Cohn & Wolfe, said that the Legislative Assembly of Ontario listened to the needs today but have not made a decision. While the government reviews the information yet again lives hang in the balance.