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machado: canada's decision-makers have an all talk, no action, way about them and it stinks

when are we going say no to more conversation and mean it, only accept action and dare our policymakers to be brave and to take a stand that finally makes things happen?

by lisa machado

nov 24 2023

5 minute read

join the conversation

when will policymakers finally be brave?

being overworked, understaffed, overwhelmed and underfunded are legitimate reasons for a failing healthcare system, but it's what comes next that bears mentioning: nothing. getty

i live in a pretty connected community. people notice the routines of others and don’t hesitate to step in if something’s off (mrs. g, thanks so much for letting me know that my son wasn’t wearing his coat this past tuesday when it was snow/raining).

so it wasn’t weird when a neighbour from around the block sent a message on facebook to ask if i was ok since he hadn’t seen me walking my dogs lately. we chatted a bit, covering everything from his aging cat who sleeps all the time to the annoyingly large house that was being built down the street to the suddenly freezing weather. then he mentioned his wife.

“she seems to be losing her memory,” he wrote. “and it takes about a year to get testing.”

a year to get testing.

that’s 365 days that this couple will be worried, anxious and stressed about what’s going on in her head; 365 days that time will stand still in their lives as they wait in limbo not sure what to do next and how to plan ahead. most importantly, it will be 365 days that she could be getting treatment to possibly slow any decline, and he, as her caregiver, could be getting support.

is this really how we are living now? why, yes. yes, this is how we are living.

emergency room wait times of weeks

just this week, someone died at winnipeg’s grace hospital while waiting in the emergency department (many others have lost their lives in ers across canada in the last year or so, in new brunswick vancouver nova scotia , just to name a few). this person had been waiting for 33 (!!) hours. long waits in emergency rooms is old news, for sure. in fact, grace hospital has been in the press a lot — one story recently reported patients waiting in hallways for care for upwards of a week. wtf.

and this is just what makes it into the papers. consider for a moment the trauma experienced every day that’s unreported, that doesn’t make it further than a story told to a funeral home director or that people carry with them in their hearts and on their shoulders because they feel powerless to do otherwise.

that people are dying while waiting in places they went to for care is in itself astonishing, terrifying and completely nonsensical. but what’s even more bananas is how those in positions to make change continue to respond and react.

when asked to comment on the death of the grace hospital patient, darlene jackson, president of the manitoba nurses union, said that she thought it “was a terrible, terrible consequence of our critical nursing shortage and the workloads that nurses are working under.”

what has the healthcare system done for you lately?

it’s a version of the same pat response used every time something devastating happens in healthcare — everyone is overworked, understaffed, overwhelmed and underfunded. legitimate reasons all of them, but it’s what comes next that bears mentioning: nothing. nothing ever comes next. no foot is put down. beyond suggestions, commiserations and apologies, there’s never any action that can be counted on. and sure, there have been many commitments made to healthcare funding and promises of change over the last year or so, and yet, find me one person who, when asked what the healthcare system has done for them lately, will lean back in their cosy chair with a cosy smile and, with a warm hand on their heart, start rhyming off platitudes of gratitude and thanks that finally, all the promises have come true.

so how long are we going to just let people die in our hospitals, wait helplessly for tests, take on arduous caregiving roles without support, and not have access to the therapies that could save their lives?

earlier this week, i attended a launch event called i am number 12 , a campaign in which 12 rare disease advocates participated in a photo exhibit to raise awareness for canada’s national strategy for drugs for rare diseases — a strategy given the green light by the federal government earlier this year. in march, to be exact. after years of advocacy, lobbying and campaigning by rare disease champions, led mostly by the canadian organization for rare disorders , this was a huge victory. and yet, eight months after the big announcement, ask anyone involved in the rare disease space — from patients to pharma — about the status of this much-needed strategy and they use words like, “stalled,” “non-existent,” and “unknown.”

hence this event, which, although spectacular and illuminated with compassion, courage and perseverance that even the bravest of us would find hard to understand, was yet another reminder of how far we have not come.

this is it, right now, right here: life

making any kind of change in healthcare these days feels much like being the kid in a toy store with your parent and being fixated on something that they think is too expensive, not useful or will take a boatload of patience and effort to build. they put you off with comments like, “maybe for your birthday,” “grandma might get you that,” or “let’s see what’s around the corner,” hoping your attention gets caught by the next shiny, happy thing, and that a tantrum doesn’t happen at the cash register.

except in rare diseases, and all health issues, there is no next shiny happy thing. this is it, right now, right here: life. and it’s not just about the lives of patients, but also those of spouses, partners, parents, children, siblings and friends, whose well-being, peace and calm depend on the health of the person they love being taken seriously, respected and valued.

how long are we going to wait for a living and breathing rare disease strategy? how many expensive cocktail and cheese “hey-we’re-still-here” events are we going to host just to bring our issue back to the top of someone’s inbox? and when are we going say no to more conversation and mean it, only accept action and dare our policymakers to be brave and take a stand that makes things happen?

perhaps a tantrum is in order.

in fact, it’s long overdue.

join our #enoughisenough movement. in the coming weeks, we will be asking canadians to tell us their challenges in healthcare in one sentence, and together with this country’s leading advocacy groups, we’ll challenge decision-makers to be brave, to step up and finally take meaningful action.

what’s your #enoughisenough?

lisa machado is the executive producer of advocacy & better health. she can be reached at lmachado@postmedia.com.

lisa machado

lisa machado began her journalism career as a financial reporter with investor's digest and then rogers media. after a few years editing and writing for a financial magazine, she tried her hand at custom publishing and then left to launch a canadian women's magazine with a colleague. after being diagnosed with a rare blood cancer, lisa founded the canadian cml network and shifted her focus to healthcare advocacy and education.

machado: canada's decision-makers have an all talk, no action, way about them and it stinks

when are we going say no to more conversation and mean it, only accept action and dare our policymakers to be brave and to take a stand that finally makes things happen?

emergency room wait times of weeks

shortness of breath led saskatchewan man to rare disease diagnosis

rare diseases: 'it can take an average of five years for a diagnosis'

what has the healthcare system done for you lately?

this is it, right now, right here: life

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machado: canada's decision-makers have an all talk, no action, way about them and it stinks

when are we going say no to more conversation and mean it, only accept action and dare our policymakers to be brave and to take a stand that finally makes things happen?

emergency room wait times of weeks

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this is it, right now, right here: life

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