Grace & Aleiandro

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

Just before our son, Aleiandro, turned 16 and after a decade of whirlwind tests and auspicious coincidences, he was finally diagnosed with a rare disease that causes inflamed cartilage throughout his body.

While it was a relief to finally know what was wrong, our world took a very sudden, complex and traumatic turn. A world of looming “medical poverty.”

There’s no cure. He takes 25 medications daily to deal with symptoms. Some covered by my husband’s plan, some through compassionate access, others not covered at all. Just one of these costs $3,000 per month out of pocket. And when you add up the copayments on 25 medications…sigh.

Myself, my son and my other children moved to the city to be closer to appointments and clinics, while my husband had to stay for his job. I had to quit mine as it was impossible to juggle it with all of the appointments and my family.

My faith has been my touchstone throughout this, and I am thankful for it, my family and friends. I can’t help wondering if other Canadians, the federal government and the provinces could take some of the burden from the God I rely on. I know if you were in my position, I would not hesitate.