Media Advisory - Ontarians with a rare blood disease await a life-saving
decision from Government
TORONTO, Nov. 22 /CNW/ - Today, patients and caregivers affected by an ultra-rare blood disease called Paroxysmal Nocturnal Haemoglobinuria (PNH) will attend Question Period at the Legislative Assembly of Ontario to hear first hand whether or not the only life-saving treatment available to them in Canada, Soliris, will be funded by the provincial drug program.
Discussion in the Legislature today will take place as PNH patient Lucas Maciesza, 26, lies in a hospital bed in southwestern Ontario fighting for his life, because the Government refuses to pay for Soliris. This is despite three requests from Lucas' specialist over the last year for public funding for the treatment that will save the young man's life. Other patients across the province and country are also waiting in anticipation for the Ontario Government's decision, as they too will soon be caught in a similar life-and-death situation.
Studies show that treatment with Soliris allows a PNH patient's life expectancy to return to that of a healthy person by preventing the premature destruction of red blood cells and thereby significantly reducing life-threatening complications, such as blood clots (strokes, heart attacks) and kidney failure.
Although approved almost two years ago by Health Canada, patients suffering with PNH are still unable to access Soliris because provincial drug programs are not funding this life-saving treatment. For some patients in Canada, it's already too late.
Who: |
Barry Katsof, PNH patient and President, Canadian Association of PNH Patients Hilary Handley, PNH patient |
Where: | Legislative Assembly of Ontario Legislative Building, Queen's Park Toronto, Ontario |
When: |
Monday, November 22, 2010 10:30 - 11:30 a.m. (during Question Period) |
Mr. Katsof and Ms. Handley will be available for comment immediately following Question Period in the second floor lobby outside the Legislative chambers at Queen's Park.
For further information:
or to book an interview, please contact:
Stephanie Yack
Cohn & Wolfe
(416) 924-5700 ext. 4043
[email protected]
Joanne Koskie
Cohn & Wolfe
(416) 400-6352 - mobile
[email protected]
Share this article