September 28th, 2011 by AndrewSchorr in Opinion
No Comments »
As we often say at Patient Power, there is no one source for medical information. The same is true when it comes to support for patients. No one organization is THE place to go and has all the answers.
That may sound obvious. But just as it has taken a long time to dislodge the “Doctor as God” perception or “I’m the doctor and you’re not” put-down of “problem patients,” there have been some non-profit advocacy groups that have seen themselves as the “be all and end all” for conditions they cover. In both cases, the arrogant doctor and the “100,000 pound gorilla” organization, neither took what I call the “big tent” view. In their view, they were the tent and there was no room for anyone else. That’s never been our view and I wanted to tell you how we are celebrating our relationships with a multitude of partners, many of whom are becoming friends. 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
1 Comment »
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*
