My brain tumour has returned, my drug plan has not

Posted on December 17, 2019 in Health Debates

Source: — Authors: – Opinion/Contributors

In 2001, when I was 18 years old, I wrote a letter to The Star decrying the high cost of prescription medications. I had been newly diagnosed with a pituitary tumour and was gobsmacked to learn that the medication to treat one of my symptoms rang in at over $20 per pill. I was covered by my dad’s benefits plan at the time, but even as a high school student, I immediately saw that it would be a huge source of stress if I wasn’t covered.

I went on to have neurosurgery and lived over a decade without the need for that medication, but the experience marked me. I lived in a country where the surgery to remove a tumour was covered, but the medication to mitigate the tumour’s impact was not. It didn’t feel like universal health care.

Over the years, I have told anyone who would listen what a medication can cost, that there are medications far more expensive than the one I needed and have lived in fear that the next time I was visited by an illness, I wouldn’t be able to afford to treat it.

I saw my mother diagnosed with breast cancer and need an injection that cost several thousand dollars. It was covered, not by our “universal” health care system, but again by my father’s workplace drug plan.

I am now 36 years old and in a high-risk breast cancer screening program and have no workplace benefits. My fiancé just turned 40, has had the same employer for over seven years and has no workplace benefits. What happens if I develop the cancer that has already hit three women on my mother’s side? Will I be able to access the same medication?

Eighteen years after my neurosurgery and that initial letter, my high school nightmare came true. My pituitary tumour has returned and I find myself working part-time billing benefit plans, yet I have no benefit plan myself. The patent on the medication I’ve been prescribed expired years ago, but a generic version isn’t being manufactured because it isn’t considered “profitable enough” by the drug company that makes it.

Out of desperation, I looked into the Ontario Trillium drug program, but under the official drug formulary, Trillium will only cover the generic form — a.k.a. the drug that doesn’t actually exist in pharmacies. Only the brand name is available.

I am now looking to apply to the extended access program and meanwhile the prescription has sat unfilled in my dresser drawer since October. The bureaucracy to access the program is daunting when you’re trying to keep your head above water: It costs $180 for eight pills that combined are the size of a dime, my current income barely covers a Metropass and my share of the rent is a painful prospect.

Canadians with chronic illness, low wages and no employer benefits have been hearing that pharmacare is coming for over a decade. OHIP+ was a start, but for those of us over 25 who have been advocating for half of our lives to be able to access medication, it felt like a gut punch and ultimately even it was rescinded.

We point a lot of fingers at our neighbours to the south, but in its current form, our country will remove a tumour and leave the medication on the back of the patient (to say nothing of teeth, vision care and mental health, which are curiously not covered by our “universal” system). Individual patients have no recourse to regulate drug prices or bring a generic back into production — but governments do.

This may be just another issue in an eventual to do list to many of the policy-makers who endlessly debate pharmacare and take meetings with drug company lobbyists. Theirs is a world where jobs are stable, well-compensated and offer robust benefits.

To those of us directly affected, it’s a crisis and daily failure of a country that prides itself on socialized medicine to step up and protect us. We don’t need this in 2027 — we have prescriptions that aren’t being filled now.

As it stands today, every healthy worker in Canada is one diagnosis away from learning exactly what our universal system doesn’t cover and I don’t wish this hell on anyone.

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