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*
January 4th, 2011 by AndrewSchorr in Better Health Network, Health Tips, Opinion, Research
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You are an individual right? To your mom and dad you are/were like no other. Hopefully your family and friends continue to see you as one-of-a-kind. Had you considered your doctor should see you that way too? Not as yet another one with diabetes, or heart disease, or cancer, but as a singular human being with biology that may be different from even the next person through the door with the same diagnosis.
This is the age of “personalized medicine” and it will accelerate in 2011. It is our responsibility as patients to ensure the power of this concept is leveraged for us each time we interact with the healthcare system. This is especially true as we manage a serious chronic condition or a cancer.
Now, in research and in clinical practice there are refined tests to determine what our specific version of a disease is and there are tests to see how a targeted therapy is working in our bodies. In other words, there’s the opportunity to see which therapy might be right for us that might be different than what is right for another person, and then there is the opportunity to monitor the therapy early on to see if it is doing its job. Read more »
*This blog post was originally published at Andrew's Blog*
December 20th, 2010 by AndrewSchorr in News, Opinion
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Without having one myself, I am pretty familiar with bone marrow transplant as a potential curative and lifesaving approach. After all, it was invented in my hometown of Seattle and I’ve met Dr. Donall Thomas who won a Nobel prize for developing the approach. I have met people who have been given a new lease on life because of transplant, I’ve known people who have died when transplant did not work for them or complications overwhelmed them, and I know many doctors who are transplant experts.
I know how finding a perfect match can be hard — especially when the patient in need is part of an ethnic minority. And I have heard the horror stories of matched donors saying no to patients who would die if they didn’t receive a transplant from them.
Now comes a story from Massachusetts that’s almost as bad — not a story of sentencing people to death by not donating, but a story of defrauding our healthcare system and, in the process, undermining a legitimate nationwide effort to have more people registered as potential donors. Read more »
*This blog post was originally published at Andrew's Blog*
November 30th, 2010 by AndrewSchorr in Better Health Network, Health Policy, Opinion
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We are invading their home turf. Increasingly, in among the thousands of doctors, scientists, and medical industry marketers at the largest medical conventions you are finding real patients who have the conditions discussed in the scientific sessions and exhibit halls. Patients like me want to be where the news breaks. We want to ask questions and — thanks to the Internet — we have a direct line to thousands of other patients waiting to know what new developments mean for them.
I vividly remember attending an FDA drug hearing a few years ago and how there were stock analysts sitting in the audience, BlackBerries poised for the “thumbs up” or “thumbs down” on whether a proposed new drug would be recommended for approval. (At that session it was thumbs down.) When the analysts got their thumbs moving, a biotech stock tanked in minutes and before long the company was announcing layoffs. Those analysts were powerful reporters.
Now patients are reporters, too, and their thumbs are just as powerful. So are their video cameras and microphones. These folks are a different breed than the folks from CNN or the scientist/journalists from MedPageToday. Their questions are all-encompassing: “What do the discussions about my disease or condition here mean for me? What should change in my treatment plan? What gives me hope? What’s important for my family to know?” Read more »
*This blog post was originally published at Andrew's Blog*
