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Tuesday, December 20, 2011

Pumping up the volume on patient voices

Zal Press is Executive Director of Patient Commando Productions, an internet initiative dedicated to promoting the patient voice as a guide to practice change. has more than 1400 patient experience stories that will be loaded onto the site, considered the world’s largest collection.

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.

Key Words: Patient Engagement, Ontario Drug Benefit Plan

1 comment:

  1. Zal's vision, concept and commitment (1400 stories plus!) is exactly what's needed to make real and human the statistics. Perhaps more importantly, these stories are essential to helping patients and their communities know 1. what they (we) are going through is normal (not pleasant, but normal) and 2. through stories, a collective of common experiences can be identified toward finding 'sweet spots' (or perhaps more accurately, sour spots) that lend themselves to achievable improved outcomes.
    Thanks Zal, and thanks Health Council of Canada for showcasing.