Jordan’s story appeared in the final report of the Advisory Council on the Implementation of Pharmacare, A Prescription for Canada: Achieving Pharmacare for All

On April 19, 2019, Jordan succumbed to his cancer, asking only that people honour his memory through small acts of kindness.

Five years ago, a passing comment to my child’s doctor led to my sarcoma diagnosis. After a whirlwind of diagnostic testing, treatment, recurrence and more treatment, my oncologist suggested a new biologic to reduce the tumour enough for more surgery.

As neither private insurance nor public programs were covering it, I faced a dilemma: prepare for the worst or pay $130,000 to get more time with my young family. But my community surprised me. A friend set up a humbling GoFundMe campaign. Then my luck changed. The drug company started a special access program. I no longer needed to worry about paying.

When I tried to return the money raised through the GoFundMe campaign everyone refused. They all said to put it aside—just in case.

Then, just in case happened. After a year, my tumours started to grow again.

I’m thankful for each extra day with my family, friends and community. I get excellent health care—except for access to new medications—I am constantly in bureaucratic limbo and information blackholes. No timelines, all I do is wait.

Yet, cancers don’t wait. They continue to grow and degrade my health little by little. No one battling disease should also have to battle the system. And they certainly shouldn’t have to worry about paying for life-saving medication.