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machado: why do cancer patients have to jump through hoops to get life-saving medication?
6 minute read
about 30 patient advocates gathered for cancertainty's 'bitterest pill' event, each standing beside a red hoop with a sign that charted the typical path of a cancer patient. supplied
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“jumping through hoops …” the woman laughed. “get it?” she said, as she nudged her friend.
they were lounging on a worn wooden bench, with giant starbucks coffees in their hands. as i walked past, i heard one of them saying she wished her forehead wrinkles weren’t so obvious, as she looked at her face in the reflection of her sunglasses.
the other woman, who appeared not so concerned about wrinkles, asked if i knew what was going on up ahead, using her cup to gesture toward the small crowd of people gathering on the lush green lawn of queen’s park. from where i stood, i could see several red hoops arranged on the grass, and people setting up tv cameras.
where you live determines if your cancer drugs are paid for
i started to explain that it was a partnership between two advocacy groups cancertainty coalition and rethink breast cancer which have been working to make it so that no matter where you live in canada, you can get the take-home cancer drugs you need to survive. (currently, while the governments in western canada, the northern territories and quebec have figured out how to offer equal, faster and affordable access to cancer medications you take at home — ontario and the atlantic provinces, not so much.)
“there are hula hoops,” i said, “to symbolize how people with cancer have to jump through hoops just to survive.”
by the time i got to the word “cancer,” the wrinkled one was back to checking her forehead. the other woman said “awww,” as she chewed on the side of her thumb.
as i walked toward the crowd, i thought about how, like a lot of bad things that can happen in a life — death, divorce, a car accident, cancer — if you have not experienced it firsthand, or cared about someone who has, you might not quite get what makes it a big deal. perhaps you don’t think it would ever happen to you.
and sure, you can use your imagination — it’s not hard when it’s not real — to picture what it would be like to lose a sibling, for your marriage to end, to be in a terrifying car crash, or get a scary diagnosis. but the true impact, in all its giant implications and breathtaking darkness, would be lost on you.
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you might even have a plan in your head in case any of these things were to happen — a contingency strategy, something to help you get through. except when that thing really does happen, it’s not at all how you imagined, and then you get it, and say something like, “i’m sorry, i had no idea.”
i have lost count of how many people i know who have been diagnosed with cancer, only to be shocked first, by the fact that their medication costs more than a their monthly mortgage, and second, that neither ohip or their private insurance covers it. i, too, was caught by surprise years ago when i found out that the medication i would need for the rest of my life was almost $5,000 each month.
if you need medicine, you barely have to open your wallet, right?
of course, no canadian could be faulted for believing that cancer drugs, particularly the ones you take home, are funded in some way. that if you were ever to hear the dreaded c-word in a doctor’s office — the odds of which are really good, by the way — getting what you need to make it through would be easy-peasy. after all, isn’t that the way our health-care system mostly works? you need medicine, you go to the pharmacy and you get it — usually barely opening your wallet. it’s part of the safety net we all rely on. right?
except that the net has been in tatters for a long time, and sick canadians have been falling through in surprisingly large numbers. for example, if you are under 65 in ontario, and need a cancer drug that you take at home, there’s a good chance you will max out your private insurance in order to get it — after waiting weeks for approval. the next ‘hoop’ is your application to the ontario trillium drug program, which adds more delays to getting your medication. and then, likely off work while you’re on treatment, you’ll need to find a way to pay the average $4,000 deductible on a lower income.
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and it’s not just cancer medications — innovative therapies for rare diseases, for example, treatments for cystic fibrosis, and medical equipment to manage diabetes are not only unaffordable, but virtually impossible to access. add in lengthy delays in diagnoses and confusing administrative processes, and well, it’s not a health-care system anyone wants to be sick in.
at queen’s park that morning, about 30 patient advocates each stood beside a red hoop along with a sign that charted the typical path of a cancer patient, beginning with the diagnosis, and moving through other gruelling steps, like finding out your medication isn’t covered, making an appointment with a drug access specialist, and the worst part: waiting.
the ‘hoop’ event came after a half-hour sitting in the public gallery during question period watching and listening to mpps argue the importance of funding cancer medications. the absurdity was not lost on patient advocates — particularly those living with cancer: it was so disheartening to see strangers debating decisions that will determine whether others live or die.
outside on the lawn, we held our signs and waited for ministers, mpps and their staff to trickle out of the legislature and “jump” through the hoops. as they stopped at each hoop, advocates shared their stories. from brain and blood cancer to metastatic breast cancer, stomach cancer, and others, each politician heard about the fear that comes with diagnosis, what it’s like to worry about not being able to pay for the medication that could save your life, and how unfair it is that someone in british columbia doesn’t have to worry about paying out-of-pocket for life-saving treatments, but someone with the same cancer in ontario or the atlantic provinces does.
the response was always kind and supportive — there were even some tears. but after every chat, i was left me with the sense that, even as dramatic as all of our stories were, no one seemed quite sure how to make what should happen next happen. it was a more worrisome version of the ladies on the bench — awww, we agree that what happened to you is awful, but hang on, let me check my wrinkles.
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after all, these kinds of discussions have been happening with the government for years — and still, ontarians and people in the atlantic provinces with cancer continue to be made to wait for life-saving drugs, forced to spend their energy figuring out how to afford them instead of focusing on surviving this insidious and unforgiving disease.
as the last mpp slowly made his way “through” the hoops, a woman behind me wondered if our stories were making a difference. someone else commented that maybe we needed to do more — get louder, make more noise.
and while it’s better to be on the lawn of queen’s park keeping the discussion alive than not, it’s easy to wonder that if people losing their lives isn’t enough of a screaming catalyst for change, what is?
you can help by adding your name to cancertainty’s petition to bring access to take-home cancer medications to all canadians. you can also calculate how much cancer medications could cost you and your family with cancertainty’s ontario cancer calculator.
lisa machado is the executive producer of healthing. she can be reached at lmachado@postmedia.com. this story originally appeared in the healthing weekender. subscribe here.
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