November 12th, 2011 by AndrewSchorr in Opinion
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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*
November 5th, 2011 by AndrewSchorr in Opinion
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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*
October 23rd, 2010 by AndrewSchorr in Better Health Network, Health Policy, Opinion, Research, True Stories
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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*
