Pumping up the volume on patient voices | Health Council of Canada

Originally posted on the Health Council of Canada Blog.

Patient Commando Executive Director Zal Press writes a guest column for the Health Council of Canada blog as part of the release of the Health Council of Canada report  “How do Sicker Canadians with Chronic Disease Rate the Health Care System? ” Get the report here and watch their patient story video – a familiar face included.


I’m taking a biologic for Crohn’s disease. And I’m a lucky guy – my $30,000 annual tab is picked up by my wife’s benefit plan. But in five years, when I hit 65, we’ll be off her plan and I’ll be transferred to the Ontario Drug Benefit Plan.

I’m already fretting over what that future will bring. Will the continued financial strain on the health system foreclose on my access to this medication, and instead force a body-altering operation because it will cost the system less in the short run?

And will this decision be made by a cost-benefit analyst rather than by a collaborative agreement between me and my doctors?

US insurance companies have required multiple step therapies before approving many biologics, resulting in multi-year delays. In Ontario, the Exceptional Access Program has fallen behind in processing applications. The population percentage with chronic illness is growing and treatment of choice for managing many conditions is increasingly these pricey biologics.

After living with a chronic illness for over 30 years, I understand it’s important for patients to be active participants in our health care. But I also know that outside of the examination room, the patient’s voice is still faint and needs amplification as the discourse necessary over preserving access to treatment starts to gain momentum.

Our southern neighbour offers insights into the problem of access. Is the US experience just the tip of the iceberg of a dangerous Canadian trend? We can learn from that as we debate the broader issue of sustainability. In the meantime, I’ll take comfort from the security of my marriage – and my wife’s plan.