Patient Commando #TentTalk – Live Journal

“Healing Through Theatre” – July 10th, 5PM at The Toronto Fringe Festival Tent Talks

Relevant Hashtags: #FringeTT, #TentTalk #FringeClub

♦♦♦ Pre Event ♦♦♦ 13:00 via @PatientCommando: Join us Today for our @Toronto_Fringe tent talk with @CancerCantDance details on FB http://t.co/9Sba9WPu

13:05 via @PatientCommando: PM Tent Talk at 581 Bloor Street for @Toronto_Fringe – Come one, Come all.

(RT via @mhoul3)

13:12 via @Colleen_Young: @PatientCommando see you at the #FringeTT at 5pm for your show. Can’t wait http://t.co/vPGmEfJk

13:39 via @PatientCommando: Everything you need to know about today’s Tent Talk event – http://t.co/0sIdoxca

(RT via @Toronto_Fringe, @rosabourin, @BeeRaskob)

16:00 via @PatientCommando: 1 Hour to show time @Toronto_Fringe “Healing Through Theatre” #FringeTT http://t.co/0sIdoxca

(RT via @EatPooLove)

16:41 via @PatientCommando: Getting our team sorted, the camera primed and twitter feed at the ready ♦♦♦ Event Start ♦♦♦ 17:00 via @verbitty: Taking in a @Toronto_Fringe #TentTalk at Artist Alley about theatre’s power to heal, follow me for all the live action! 17:01 via @PatientCommando: Tent talk starting and its a packed house

17:02 via @PatientCommando: Clare from @Toronto_Fringe kicks us off

17:04 via @PatientCommando: Intros with Brian G Smith, Dan Stolfi, Zal, and Dr. Jeremy  Photo: http://t.co/4Uw41jZK

17:06 via @PatientCommando: Zal talking about what we do http://t.co/fIZCl19c 

17:08 via @verbitty: Patients like to tell their story, empowers them to engage their providers for better care

17:08 via @PatientCommando: Dr. Jeremy talking [...] continue the story

Pumping up the volume on patient voices | Health Council of Canada

Originally posted on the Health Council of Canada Blog.

Patient Commando Executive Director Zal Press writes a guest column for the Health Council of Canada blog as part of the release of the Health Council of Canada report  “How do Sicker Canadians with Chronic Disease Rate the Health Care System? ” Get the report here and watch their patient story video – a familiar face included.

 

I’m taking a biologic for Crohn’s disease. And I’m a lucky guy – my $30,000 annual tab is picked up by my wife’s benefit plan. But in five years, when I hit 65, we’ll be off her plan and I’ll be transferred to the Ontario Drug Benefit Plan.

I’m already fretting over what that future will bring. Will the continued financial strain on the health system foreclose on my access to this medication, and instead force a body-altering operation because it will cost the system less in the short run?

And will this decision be made by a cost-benefit analyst rather than by a collaborative agreement between me and my doctors?

US insurance companies have required multiple step therapies before approving many biologics, resulting in multi-year delays. In Ontario, the Exceptional Access Program has fallen behind in processing applications. The population [...] continue the story

Patient Commando’s Survival Guide Now Available.

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Patient Commando attends Health Council of Canada’s National Symposium on Patient Engagement

During the Health Council of Canada Symposium on Patient Engagement Daniel Stolfi, star of Cancer Can’t Dance Like This, disclosed that his tipping point to becoming an engaged patient, came when he was being over medicated in error and suffering bad side effects but no healthcare providers were listening.

Healthcare leaders across the country came together to learn how to improve patient engagement and increase safety and improve outcomes at the Allstream centre in Toronto.

Daniel presented his patient story to inform the system on how to improve communications between doctors and patients and increase the state of collaboration. His presentation was funny, deeply personal and moving. The crowd was animated and laughing.

A report of the symposium is promised to be released this winter.

Be sure to sign up for Patient Commando’s newsletter for updates and to receive a free copy of our white paper:  On a New Frontier of Patient Engagement.

Cancer patients, survivors find truth in ’50/50′ | LA Times

In the new film “50/50,” there is a scene where cancer patient Adam, played by Joseph Gordon-Levitt, is on a gurney being wheeled into the operating room with his parents by his side. As the nurses take the 27-year-old away, he calls out for his mom like he’s a little boy. It’s an affecting moment, but for Matthew Zachary, it was particularly personal.

“That’s exactly what happened to me,” said the 37-year-old father of twins from New York City who was diagnosed withbrain cancer at age 21. “Literally I’m with my parents and they are wheeling me off to the operating room and I lost it. It was a horrible, horrible experience.”

For Heidi Adams, it was the scene at the dinner table between Gordon-Levitt’s character and his mother, played by Anjelica Huston, who wants to move in to help care for him.

“I remember that conversation with my mother, that struggle at that time in your life when you are discovering your independence, fighting for your independence and you are thrown back into this position where you need to rely on people, where you need your mom. It’s very disorienting,” said Adams, 44, from Austin, Texas, who lived with her parents for 2 1/2 years when [...] continue the story