Man with rare blood disorder begins treatment
Lucas Maciesza, a 26-year-old with a rare blood disorder, has finally begun to receive expensive, but life-saving treatment.
The Wellington County man was transferred to the London Health Sciences Centre earlier this week, and the hospital itself is footing the bill for the costly drug, for now.
Maciesza has Paroxysmal Nocturnal Haemoglobinuria or PNH, a disease that destroys the body's red blood cells and causes internal bleed, blood clots and severe kidney damage. Only about eight people in Ontario have the disorder.
He has been asking the provincial government to pay for the potentially life-saving drug Soliris, at the cost of about $500,000 per year.
So far those requests have been denied, despite the fact that Soliris has been approved by Health Canada to treat PNH since January 2009.
According to the province there are concerns about the clinical benefits, safety and the cost-effectiveness of the drug.
While the hospital is funding the treatment in the short term it likely can't continue indefinitely, given the high cost and the fact that that Maciesza will need it for the rest of his life.
The family says they still have no word from the Ontario Ministry of Health about possible approval of the drug.