Gateway Gazette

Foundation Calls For Provincial Strategy For Rare Diseases

PC Leadership Contenders Urged To State Position on Treatment For Rare Conditions

“It is the role of government to protect and ensure fair and equitable access to Health Care for all Canadians, not just the ones whose treatments are inexpensive.”

Aleena Sadownyk and Isaac McFadyen. Aleena began treatment last year after a hard-fought battle for government approval. Isaac McFadyen was the first person treated in Canada 8 years ago. Both are thriving today.
Aleena Sadownyk and Isaac McFadyen. Aleena began treatment last year after a hard-fought battle for government approval. Isaac McFadyen was the first person treated in Canada 8 years ago. Both are thriving today.

On the one-year anniversary of life-saving treatment being approved for a young St. Albert toddler, The Isaac Foundation is calling on all three PC Leadership contenders to commit to ensuring all patients suffering from rare conditions in Alberta receive the treatment they need.

Last year, Aleena Sadownyk was diagnosed with MPS VI, a very rare, progressive, and debilitating disease that attacks the bones, tissues, organs, and muscles. Without access to a weekly enzyme replacement therapy (ERT), Sadownyk would have developed bone and joint disease, heart and airway disease, progressive stiffening of the joints, and would have a severely shortened life-span. Initially, Sadownyk was denied access to the life-saving treatment through the Alberta Rare Diseases Funding program due to its high cost, estimated at close to $300,000 per year. After a very public advocacy campaign that garnered national support, and with tireless help from Alberta MLA and Wildrose Health Critic Heather Forsyth, Sadownyk had her treatment approved. Today, she is thriving, happy, and the disease progression has been halted.

“It’s incredulous to me that Aleena wouldn’t have been given the opportunity to have a normal, healthy life because the cost of that opportunity was too high,” said Andrew McFadyen, Executive Director of The Isaac Foundation. His organization supports patients and families dealing with MPS and led the advocacy effort for the Sadownyk family last summer. The Isaac Foundation has also led successful efforts to ensure treatment for children has been covered in many other provinces, most recently in Saskatchewan and Ontario. “Dollars and cents should never play a role in the health of Albertans, and I urge these leadership contenders to recognize that and commit to ensuring that treatments for rare diseases becomes a priority once elected.”

Aleena Sadownyk and the Executive Director of The Isaac Foundation, Andrew McFadyen
Aleena Sadownyk and the Executive Director of The Isaac Foundation, Andrew McFadyen

McFadyen notes that there are five other patients suffering from a similar enzyme deficiency to Aleena’s and none of them are receiving the life-sustaining treatment they need through the publicly funded health care system. The therapy these patients need has been approved by Health Canada, but it cannot be administered until Alberta Health agrees to fund it. “Politicians often look at the up-front cost of treating these patients and, at first glance, it’s incredibly high. But they don’t take the time to fully understand the cost of not providing treatment, from hip replacements, heart valve surgeries and other medical interventions, to continued hospital care and eventually progression to palliative care. Many parents have to leave the workplace to care for their children, and when these challenges are coupled with a severely reduced quality of life, the cost is unquantifiable. Not only is treating these rare diseases cost effective, it’s the right thing to do.”

Wildrose Official Opposition Health Critic, Heather Forsyth says it is incumbent upon government to ensure all Albertans have access to the life saving treatment they require. “Alberta makes significant investments into the research and development of innovative treatments for rare diseases. It’s quite frankly absurd for government to now withhold life saving drugs after they’ve been approved from children who need them. We’ve seen how effective Aleena’s treatment has been. It’s now time for the government to do the right thing, and fund treatment for others suffering from similar enzyme deficiencies.”

The current leadership race has focused on health care but none of the candidates has addressed the dire need for a provincial strategy to deal with rare disease treatments. McFadyen hopes that changes and the conversation about health care can begin to include rare diseases. “It is the role of government to protect and ensure fair and equitable access to Health Care for all Canadians, not just the ones whose treatments are inexpensive. Before the next Premier is chosen, I implore the candidates to release a statement to tell Albertans where they stand on this issue. The lives of patients with rare diseases shouldn’t hang in the balance because of government inaction. Now is the time to lead and ensure expedited access to treatments already approved by Health Canada.”

Isaac Foundation logo(The Isaac Foundation)

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