February 28, 2013 is International Rare Disease Day, and Canadians with rare conditions are speaking up to bring awareness to the challenges members of this community face. In particular, patients living in New Brunswick are raising their voices, as it is one of only two provinces without a provincial catastrophic drug program. As an individual in need of access to life-saving treatments, PNH patient and New Brunswick resident Mark Brennan shares his experience in the Canadian Organization for Rare Disorders (CORD) press release:
Saint John resident Mark Brennan has first-hand experience with challenges of living with a rare disease. Brennan was diagnosed with a very rare, progressive and fatal blood disease called paroxysmal nocturnal hemoglobinuria (PNH). Although a new drug, Soliris, was approved for funding in all provinces, including New Brunswick, he has yet to have access to the drug either through government or private insurance funding. “Rare disease prescription drug coverage has been a missing piece of public policy in Canada and in New Brunswick for too long,” says Brennan. “It’s like saying to those of us with rare diseases that the price of our lives is not worth the cost.”
To read CORD’s full press release, click here.