All Canadian provinces except Quebec announce funding agreement for PNH drug, Soliris

L'Association Québécoise de l'HPN regrets that Quebec remains one of the only jurisdictions in the developed world to decline including the only effective life-saving treatment against an ultra-rare blood disease - paroxysmal nocturnal hemoglobinuria (PNH) - on its public drug insurance plan drugs list. Late last week, all Canadian provinces, with the exception of Quebec, announced a funding agreement for Soliris, drawing attention to the fact that Quebecers suffering from the fatal disease must face a more laborious process than patients from other provinces to gain access to the life-saving treatment.

In recent months, L'Association québécoise de l'HPN has increased its pressure on the government and private insurers to improve Quebecers' access to Soliris. The treatment has been available in Canada since early 2009, and is the first and only medication for PNH with proven efficacy that allows a patient's life expectancy to return to that of a healthy person. However, in June 2011, INESSS, an organization which makes recommendations to the Minister of Health on drug funding, released an advisory to exclude Soliris from the list of drugs covered by the Quebec public drug program.

Sébastien Legault, spokesperson for L'Association québécoise de l'HPN, remains confident that Quebec will follow the lead of the other Canadian provinces where PNH patients will no longer have to endure lengthy and costly battles for access to the only drug that can provide a normal quality of life.

"Our efforts aim to ensure that all PNH patients are treated fairly, regardless of their financial circumstances or where they live. We continue to believe in a happy ending for those who, like me, need this life-saving treatment to survive,'' says Mr. Legault.

One Quebec PNH patient cannot access treatment

Guy Hallé, a resident of Huntingdon, Monteregie, still does not have access to a treatment which may save his life. The young father, who has suffered from PNH for more than 11 years, was recently denied reimbursement for the second time by his insurance company, MÉDIC Construction, because Soliris is not on the list of drugs reimbursed by the Régie de l'assurance maladie du Québec (RAMQ). Quebec law stipulates that private insurers must reimburse the drugs covered by the RAMQ, and cannot offer less benefits than those of the provincial drug program, meaning that Mr. Hallé has no other option than to watch his health deteriorate daily.

''I've been living with the effects of this disease for the past 11 years and my condition continues to worsen. I am living on borrowed time and alternatives to Soliris are only Band-Aid solutions; they do not resolve the life-threatening complications of this disease. The concern about my life expectancy remains, since I will soon no longer be eligible for blood transfusions. My only desire is to enjoy life with my family and be able to look forward to our future together,'' pleads Mr. Hallé. For the sake of Mr. Hallé and the health of all PNH patients, l'Association québécoise de l'HPN urges the minister of health and the government of Quebec to immediately add Soliris to the list of reimbursed drugs.