December 21st, 2010 by DavedeBronkart in Better Health Network, Opinion
Tags: Chronic Illness, Chronic Pain, Doctors' Waiting Rooms, e-Patient Dave, E-Patients, Healthcare Social Media, Pain Management, Public Awareness, Social Media In Medicine, Social Media Outreach, Spoonies, The Spoon Theory
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If you don’t truly understand how draining it can be to live with chronic illness, including chronic pain, go read The Spoon Theory right now. In five minutes it forever changed my own awareness of my wife’s arthritis and bone pain.
On Twitter I saw “spoonies” raving about this months ago, but I finally took time to read it: 2,100 words and worth every second. Also, on Twitter follow @bydls – “But you don’t look sick!” – and explore their smart website, where they’re wisely selling posters of the story for doctors’ waiting rooms, and everything else imaginable in modern outreach through social media.
These are smart people, and this is a powerful piece of writing.
*This blog post was originally published at e-Patients.net*
December 21st, 2010 by Debra Gordon in Health Policy, Opinion
Tags: Avastin, Bevacizumab, Breast Cancer Treatment, Clinical Efficacy, Clinical Studies, Drug Approval Revoked, Drug Manufacturing, FDA, Federal Government, Food and Drug Administration, Government Takeover of Healthcare, Healthcare reform, Medical Science, Medicare, Oncology, Pharmacology, Rationing Of Medical Care, Risks vs. Benefits, Senator David Vitter, Washington Post, Women's Health
1 Comment »
“With this disappointing decision, the FDA has chosen to place itself between patients and their doctors by rationing access to a life-extending drug. . . We can’t allow this government takeover of health care to continue any longer.”
That quote, courtesy of this morning’s [Dec 17th] Washington Post, incensed me to such a degree that I am writing this blog despite the two deadlines I have today. The speaker is Sen. David Vitter (R-La). The “disappointing decision” he refers to: The FDA’s decision to remove the breast cancer indication for Avastin (bevacizumab).
I wrote about this earlier, and you can read the post here, but that was before yesterday’s [Dec 16th] decision. I’m not going to comment here on the benefits or risks of Avastin. . . except to say that I’m sure there are individual women who are alive today because of it, and, quite possibly, individual women who are dead today despite it. But that’s not how we do medical science, based on individual patients. We do medical science based on large clinical studies (which are often designed with and approved by FDA officials). It’s not a perfect system, but it’s the system we have. Read more »
*This blog post was originally published at A Medical Writer's Musings on Medicine, Health Care, and the Writing Life*
December 20th, 2010 by AndrewSchorr in News, Opinion
Tags: Andrew Schorr, DNA Swab, DNA Testing, Dr. Donall Thomas, Ethnic Minority, Hired Models, Luring Organ Donors, Luring Patients, Medical Scams, Organ Transplantation, Patient Power, Patients Waiting For a Transplant, Potential Organ Donors, Registered Organ Donors, University of Massachusetts
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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*
December 20th, 2010 by Michael Kirsch, M.D. in Opinion, Research
Tags: American Scientists in Guatemala, Dr. Michael Kirsch, First-Class Ethics, Human Subjects for Research, Indecent Medical Behavior, MD Whistleblower, Medical Context, Medical Ethics, Mentally Ill, Research Studies, Scientific Experimentation, Scientific Testing, Syphilis, Third-World Citizens
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I have always felt that issues should be judged by the context of their times. For some issues, however, context provides no justification. Thankfully, the field of medical ethics has evolved into a robust discipline, and there is an enormous need for it. I have read defenses of prior ethical lapses, and even some recent ones, suggesting that context matters.
If a three-month, placebo-controlled study is conducted in the developing world testing a medicine that was highly effective against a serious illness, are the ethical dimensions considered and respected? Were the pharma companies choosing this study locale as a cheap test run for their drug, which will ultimately be marketed in the west? Is it ethically problematic not to provide additional medications to ill subjects after the 3 month trial ends? Can we be assured that a rigorous informed consent process was followed? Sadly, outrageous practices have been reported in the very recent past.
Our president and secretary of state recently and rightfully apologized to Guatemala for American experiments performed there in the 1940s when patients were intentionally infected with syphilis. These patients were mentally ill. While I can concoct a distorted and tortured rationale that would justify this reprehensible practice, such reasoning passes no threshold of decency. Some behaviors and practices are always wrong, in any context. Read more »
*This blog post was originally published at MD Whistleblower*
December 20th, 2010 by Bryan Vartabedian, M.D. in Better Health Network, Opinion
Tags: 33 Charts, Alienated Experience, Clinical Judgment, Disease Control, Doctors Who Blog, Dr. Bryan Vartabedian, Empowered Patients, Health 2.0, Health Journalism, Internet-Based Health Information, Jaron Lanier, Mass Professionalism Of Journalism, Medical Journalism, Medical Literature, Medical Profession, Medical Publishing, Newsman, Newspaper Industry, Patient Empowerment, Personal Technology and Health, Role of the Physician, You Are Not A Gadget
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The Internet has threatened journalism. Clay Shirky has said that everyone is a media outlet. An Internet connection and blogging platform makes everyone a publisher. Can the mass professionalization of journalism be applied to medicine or health? Can access to a broadband connection outfit a citizen to think and act like a physician?
There are pieces of what physicians do that can be replicated, and other pieces that can’t. The technical things that doctors do can’t be replaced. Removing an appendix or replacing a heart valve, for example. Tough to pull off on CureTogether.
But what about the thinking? After all, patients have access to the same information, references, and literature as physicians. Unfettered access to information can create an illusion. It can give us a false sense of control. Read more »
*This blog post was originally published at 33 Charts*
