November 3rd, 2010 by AndrewSchorr in Better Health Network, Health Tips, News, Opinion, Research, True Stories
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About 10 days ago I appeared in Phoenix as a speaker at a regional education seminar put on by the Leukemia and Lymphoma Society. My topic was sharing my experience as a participant in a clinical trial. I was delighted to do so, as I feel that trial saved my life and restored me to good health.
I am hoping my words encouraged others to consider being in a trial. There are no guarantees of the result, but trials are always worth considering. Unfortunately, few patients do. That may limit their choices and certainly holds back research that could help others. What a shame.
Clinical trials are defined as human subject research. It is through these trials that we determine if new drugs or devices can better serve patients than what is currently available. Clinical trials are available for almost every disease — although finding these trials can be challenging. 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*