Birth of a New Patient Movement

How do patient advocacy groups get started? What motivates people to get engaged and involved? How do they become enabled and empowered?

A milestone event was held on July 20th, 2013 in Toronto to highlight the plight of women suffering from uterine fibroids and the associated heavy menstrual bleeding.

Women from across Canada who suffer from uterine fibroids came together to meet, share and brainstorm to create the first authentic patient voice in Canada regarding this important area of women’s health.

The significance of this event lies in the impact of this condition on the whole patient experience from living with the disease, diagnosis, treatment to follow up. Uterine fibroids account for more hysterectomies in Canada than any other condition. According to the National Uterine Fibroids Foundation (NUFF) in the U.S., up to 80 percent of all women have uterine fibroids. While the majority never have symptoms, one in four ends up with symptoms severe enough to require treatment and the experience can be horrifying.

In Canada, there is no organization such as NUFF, no unified or organized patient voice, to advocate for timely and appropriate care and treatment of women who have suffered unbelievable pain, discomfort, embarrassment, humiliation and anger due to uterine [...] continue the story

Cocaine Blues

One of my favourite early Bob Dylan songs was Cocaine Blues. I don’t know why the lyric “Cocaine all around my brain” has stuck with me for decades. But the accompanying lyric “This old cocaine ‘bout to make me sick” never meant much to me until I sat down with Kenny, the Area Chair for Cocaine Anonymous, to learn about addiction as a chronic illness.

There’s a great deal of stigma attached to the term “addict”. Pop culture and politics has shaped many of the public perspectives of cocaine addiction and what we think of addicts.  It was a revelation for me to explore the lived experience of an addict and how peer support plays a role in treatment.

Kenny shared with me his story, in advance of Cocaine Anonymous Southern Ontario chapter’s annual convention in Toronto on September 20-22. He tells it in own words with a hope to change the predominant perspective.

Kenny presents as the proverbial guy next door. He had his first contact with a mind-altering substance at age 13 when a schoolmate introduced him to sniffing nail polish remover. “Lets’ give it a shot”. He did. And he enjoyed it.

You might expect to think it was all downhill [...] continue the story

XX in Health – Canadian Women Changing Health

Our first annual list of Canadian Women Changing Healthcare brings the spotlight on women who are changing the face of healthcare yet don’t get the recognition CEO’s do. We’re doing this to support XX in Health Week 2013, an initiative that focuses attention on the lack of female representation at decision-making levels.

Working with limited resources other than the sheer force of personal will, a finely tuned sense for innovation, persuasion and unlimited enthusiasm for their mission, they transform health. It’s a profound lesson in leadership, demonstrating the courage required when risking so much of your heart for your cause.

Despite the risks, they build movements, change systems, and galvanize the spirits of those in pain and suffering. These leaders leverage the power of empathy, by acknowledging the suffering, embracing and respecting it.

I’ve been privileged to have met and learned about the work of many of these changemakers. You’ll find women who have created advocacy initiatives, changed how young healthcare professionals are being taught, built new channels for patient communication, provoked a new discourse about dying, exposed ugly truths of the lived illness experience, expressed their voice through the arts, and led expeditions 300 km north of the Arctic circle as an [...] continue the story

A Picture of Health

In 2007 a team of photographers went across Canada to document the health care delivery experience of marginalized, remote and vulnerable populations.

Their cameras uncovered the stories of “invisible minorities” – people who have barriers to health care either due to where they live or how they live. They are found on the fringes of civilization. They are living among us in the inner city. They suffer from unseen illness or systemic social barriers. These photo essays give us all an exclusive look into an experience that is very Canadian, but foreign to most of us.

The Frontline Health collection is presented in collaboration with the Canadian Public Health Association. See the first 7 photo essays from the selections below. New stories will be released every month over the next year.

 

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More Frontline Health Stories

Suddenly, Cancer is the funniest joke in NYC

So who says you can’t laugh at Cancer?

This past week, the audio recording of Tig Notaro’s comedy stand-up routine about her breast cancer diagnosis last summer turned up on Louis CK’s site for a $5 download. Here’s an excerpt of Louis’ reaction: The show was an amazing example of what comedy can be. A way to visit your worst fears and laugh at them. Tig took us to a scary place and made us laugh there. Not by distracting us from the terror but by looking right at it and just turning to us and saying “wow. Right?”. She proved that everything is funny. And has to be. And she could only do this by giving us her own death as an example. So generous.

Now New York City is about to turn Cancer into the funniest joke in town. First off-Broadway and then Columbia University will celebrate the art of laughing at cancer.

On October 19, the 2011 Canadian Comedy Award winner for Best One Person Show headlines the prestigious United Solo Theatre Festival just off-Broadway. Daniel Stolfi turns his tussle with non-Hodgkins Lymphoma at the age of 25 into a tour de force of dramatizations, characterizations, humiliations and exhilarations. He takes [...] continue the story

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