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Making A Human Connection: Meeting Other People Dealing With The Same Disease

Remember when people in the waiting room at a doctor’s office were all reading magazines? It was quiet as each person waited for their name to be called. Even if you went to a specialist’s office, no one dared say “I’m here for _____. What brings you here to see Dr. ____?” No one “shared” even if, just maybe, they had a very similar health concern to the person next to them. Makes sense, health is a private matter, right? Well many people I know don’t feel that way. They feel the benefits of connecting with other patients far outweigh the risks.

The other day I was in Atlanta where 30 or so patients attended an educational “summit” for people with a rare form of leukemia, chronic myelogenous leukemia or CML.While the people who came wanted to be informed and hear the latest from medical experts and an oncology social worker, they also wanted to meet others facing the same diagnosis. Particularly in rare conditions like this one, many patients have never met someone else with the diagnosis – and they very much want to make that connection. They want to hear the stories of others and see if they are like their own.

I found that to be true when Read more »

*This blog post was originally published at Andrew's Blog*

Building Programs For People Living With Serious Conditions

I can’t get the 1989 baseball movie Field of Dreams out of my head. That’s especially true right now as I can’t wait for the seventh game of the World Series. My son, Eitan, and I sat on the couch and watched the sixth game last night and it was probably the most exciting game I’ve ever seen. Plot twists galore. You can bet the audience for tonight’s game will be HUGE.

What’s so cool in thinking back about the movie is the famous line said to the baseball fanatic farmer: “If you build it they will come.” So he built a baseball field behind his house and the greats of baseball history came to play. I have never forgotten that line and have applied it to what we “build” at Patient Power – interview programs for people living with serious health concerns.

In the past few weeks, and continuing from now on, we have been focusing on two blood-related cancers: multiple myeloma and chronic myelogenous leukemia. While there are other educational resources out there, people living with these serious conditions always want more – as well they should. Fortunately, Read more »

*This blog post was originally published at Andrew's Blog*

A Grassroots Leukemia Mission

I am just back from Phoenix where I spent the weekend with people living with CML, chronic myelogenous leukemia. The operative words are “living with” because it wasn’t very long ago when people did not live long with this disease. However, medical science and dedicated researchers like Dr. Brian Druker at OHSU in Portland, Oregon have brought us what first appear to be “miracle” pills (Gleevec, Sprycel, and Tasigna) that can keep patients alive and doing well.

My weekend was spent with several people, all taking one of the tyrosine kinase inhibitor drugs, as they were planning next steps for a new advocacy organization, The National CML Society. The Society is the creation of Greg Stephens of Birmingham, Alabama, a business consultant who lost his mother to CML. Now he has devoted his life to giving voice to patients, researchers, and building a vibrant community.

CML is not common. There are just over 4,000 new cases in the U.S. each year. And, now that there are three powerful and approved medicines, some people feel the disease is “cured” and not in urgent need of public discussion. The patients I met with said this was “baloney” and they were driven to support the new society because they felt the obvious advocacy group, The Leukemia and Lymphoma Society, was not giving them enough attention nor listening carefully to their stories. Read more »

*This blog post was originally published at Andrew's Blog*

Latest Interviews

IDEA Labs: Medical Students Take The Lead In Healthcare Innovation

It’s no secret that doctors are disappointed with the way that the U.S. healthcare system is evolving. Most feel helpless about improving their work conditions or solving technical problems in patient care. Fortunately one young medical student was undeterred by the mountain of disappointment carried by his senior clinician mentors…

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How To Be A Successful Patient: Young Doctors Offer Some Advice

I am proud to be a part of the American Resident Project an initiative that promotes the writing of medical students residents and new physicians as they explore ideas for transforming American health care delivery. I recently had the opportunity to interview three of the writing fellows about how to…

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Latest Book Reviews

Book Review: Is Empathy Learned By Faking It Till It’s Real?

I m often asked to do book reviews on my blog and I rarely agree to them. This is because it takes me a long time to read a book and then if I don t enjoy it I figure the author would rather me remain silent than publish my…

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The Spirit Of The Place: Samuel Shem’s New Book May Depress You

When I was in medical school I read Samuel Shem s House Of God as a right of passage. At the time I found it to be a cynical yet eerily accurate portrayal of the underbelly of academic medicine. I gained comfort from its gallows humor and it made me…

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Eat To Save Your Life: Another Half-True Diet Book

I am hesitant to review diet books because they are so often a tangled mess of fact and fiction. Teasing out their truth from falsehood is about as exhausting as delousing a long-haired elementary school student. However after being approached by the authors’ PR agency with the promise of a…

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