January 14th, 2011 by AndrewSchorr in Research, True Stories
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I am really excited about serving as the emcee for next week’s Personalized Medicine World Conference in Mountain View, California near San Francisco. I also will be the moderator of a panel discussion on patient empowerment. As I prepare, I am interviewing the panelists and their stories are very inspiring.
One panelist is Bonnie Addario. Bonnie had been an oil company executive in the Bay Area. She began having chest pain. Was it her heart? No. Was it a nerve problem? No. Doctors were stumped. Bonnie was frustrated, but she was also a woman of action — a “powerful patient.” She went on her own for a full body scan. The news was not good. A lung cancer tumor was wrapped around her aorta and other vessels. It was inoperable. But, fortunately, chemotherapy and radiation shrunk the tumor and loosened the stranglehold it had on her blood vessels. Surgery was then possible. It took 17 hours and she even had more radiation before she left the operating room.
Bonnie’s life was saved. But what then? She was a changed woman who wanted to do more to advance care in lung cancer. She organized a conference, first to help UCSF, where she was treated, but it immediately became clear it should be bigger. Bonnie found herself forming the Lung Cancer Foundation. Read more »
*This blog post was originally published at Andrew's Blog*
October 8th, 2010 by Bryan Vartabedian, M.D. in Better Health Network, Medblogger Shout Outs, News, Opinion, Research
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I [recently] received a press release from a friend in the Bay Area. Investigators at UCSF have published a study in the New England Journal of Medicine showing that less chemotherapy can be effective at treating some childhood cancers.
The paper was the result of an eight-year clinical study in children with neuroblastoma. In this particular population, researchers were able to reduce chemotherapy exposure by 40 percent while maintaining a 90 percent survival rate. You can read about it here.
The press release sparked a brief email exchange between me and my friend: Who might be interested in writing about this study and is there any way to get it to spread? What would make it sticky in the eyes of the public?
Here are a few ideas:
Figure out who cares. Sure it’s niche news, but there are people who would think this is pretty darn important. Think organizations centered on parents of children with cancer, adult survivors of childhood cancer, pediatric hematology-oncology physicians, pediatricians and allied professionals in pediatric medicine like nurse practitioners and hematology-oncology nurses. Networks form around these groups. Find them and seed them.
Make a video. Offer powerful, visual content beyond a press release. A four-minute clip with the principal investigator, Dr. Matthay, would be simple and offer dimension to what is now something restricted to print. The Mayo Clinic has done this really well. Read more »
*This blog post was originally published at 33 Charts*