Chosen few with access to treatment includes Government Employees or those with Private Coverage and for the rest a diagnosis becomes a death sentence says Alpha 1 Canada.

A press conference was held on January 27th 2016 with Kitchener-Conestoga MPP Michael Harris to spark a discussion in support of his call to strike a committee to investigate rare disease treatment. With regard to the treatment of Alpha-1 Antitrypsin Deficiency (Alpha-1) in Ontario, the only effective treatment for lung affected Alphas is not covered by the Ontario government.  The press conference was held at the Caboto Club with approximately 20 in attendance.

A panel of 6 patients with Alpha-1 Antitrypsin Deficiency were invited to speak on their experiences with the disease as well as their treatment by the Ontario Government. The current policy in Ontario creates an inequality gap for Canadians. A diagnosis of Alpha-1 not only affects the individual, but their families and support systems. While their health declines with the inability to access treatment, their only option becomes a lung transplant.

Alpha-1 Canada represents a global effort on a national level to change policy and provide coverage for these individuals. Alpha-1 Canada is asking the government to do the right thing and provide equitable access to effective treatment, not just for those who can afford it through their private extended health coverage. The defining characteristic of the Ontario Liberal Government’s Platform is “providing high-quality health care on the basis of need, rather than the ability to pay”. This promise is not being kept and the needs of these individuals must be met. No longer should individuals with a rare disease have to plead on the steps of Queen’s Park in order to have their voice heard and receive fair and equitable access to treatment.

Alpha-1 Canada is a national charity located in Windsor-Essex. As the voice of Canadian patients, Alpha-1 Canada advocates through actively lobbying for changes to the policy that limits treatment to a select and privileged group of patients. There is only one available treatment for Alphas with affected lunges, to which not all are entitled. The current policy makes no provisions for all Ontarians who are not Government Employees or have private coverage, which leaves a high percentage of those with the disease with a death sentence instead of a diagnosis. We are committed to ensuring that the government provides every Canadian with equitable access to treatment.