Sunday was “Rare Disease Day,” and Alpha-1 Canada used the opportunity to launch “Access for Alphas.” It’s a campaign to promote awareness about Alpha-1 Antitrypsin Deficiency (AATD), and the lack of access to treatment required for severely affected patients with the genetic condition. Alpha-1 Executive Director Angela Diano says, “With approximately 1 in 5,000 Canadians affected by this genetic condition, it is time that provincial and territorial governments support access to the only specific treatment for the disease.”
The genetic disease occurs when there is a severe lack of a protein. Augmentation therapy is the only specific treatment available for the deficiency.

Diano says, “300 Canadians are currently receiving augmentation therapy to treat their alpha-1 antitrypsin deficiency, but more than 200 other Canadians are unable to get coverage for access through their provincial and territorial governments.” He says patients are unable to cover the steep costs of augmentation therapy, which can range from $100,000 to $120,000 a year.

Alpha-1 Canada says, augmentation therapy is the only plasma-derived product for a chronic genetic disease that is not distributed by Canadian Blood Services, despite the same therapy being covered by Medicare and Medicaid in the United States.