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TEDMED: Tougher topics to chew on

The views expressed are those of the author and are not necessarily those of Scientific American.


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With earlier posts about TEDMED, I hope I whet your appetite and energized you to take on the tougher topics. There were several talks that either particularly resonated with me or that left a sour aftertaste.

Ivan Oransky, executive editor of Reuters Health, offered excellent perspective on the current trend of treating “preconditions” more aggressively, noting facetiously that “subclinical acne is the easiest type to treat.” He focused on the medicalization of even trivial problems leading to unnecessary interventions. I was immediately reminded of the fine NPR story, How A Bone Disease Grew To Fit The Prescription, which vividly described osteopenia having been created as a new disease.

Osteopenia appears to largely be a “disease” manufactured by pharma and radiology industries, opening a huge, lucrative, previously untapped market targeted largely to women. Unlike drugs for osteoporosis, which have proven value, drugs for osteopenia have not necessarily shown enough benefit to offset their side effects. Oransky concluded by admonishing us, “You all have a universally fatal condition… it’s called predeath.” Thanks for refocusing us.

Similarly, I heartily agreed with Jacob Scott, an oncologist and theoretician, noting that there is a fundamental flaw with medical school selection. At the same time that we tout that we need and want innovation, the medical school admission process is based on an irrelevant test, the MCAT, rather than on innovation or imagination. Med school continues with the push towards conformity and “teamwork” rather than individuality. Scott’s comments particularly resonated as, from day 1 of medical school, I was in trouble for questioning authority. Scott has the unusual ability to combine his interest in mathematics, physics and modeling, with patient care. I look forward to following his likely pragmatic research.

Ben Goldacre, who is constantly battling bad science gave good examples of publication bias and how negative results are suppressed, skewing perceptions and subsequent use of a drug.

I loved hearing and watching Sandeep Kishore—he is still young, but bright and energetic and already very accomplished. I appreciated his beginning with a story of his transformative visit to India. We met later and I learned we shared an interest in neglected tropical (infectious) diseases; I was a bit disappointed that his interests have now shifted to studying chronic disease. But he brings a valuable new perspective, wanting medicine and medical education to focus on structural and societal issues, social inequalities, and specifically on nutrition, exercise, behavior, the “cause of the cause” of chronic diseases.

Indigestion

There were several talks that did not sit well with me—I felt that some of the patient “voices” were rather voyeuristic or a bit akin to side show freaks—in particular, Stephen Petronio’s disturbing dance and Virginia Breen’s presentation about her autistic daughter, Elizabeth Bonker. ( I subsequently found the PBS Religion & Ethics Newsweekly episode about them, “I am in Here” more balanced and useful in helping me understand what she was trying to communicate. Breen reports her daughter, who does not speak, first typed words. “Agony.” Do you know what that means? “Quite So.” Why? “I need to talk.” (In contrast, I found Ed Gavagan’s talk mesmerizing, and illustrating the value of storytelling in medicine.)

I totally missed the point of surfer Laird Hamilton and his physical extremism. I’m more accustomed to people wanting to develop their brains as much as possible rather than their muscle. In contrast, I was pleasantly surprised by the interviews with Billie Jean King and Katie Couric. It put them in a new light for me, and I was impressed by their transforming their personal pain and struggles (LGBT issues and colon cancer, respectively) into health advocacy.

There were two other notable absences. One was the voice of nurses—the people who provided the care and caring in medicine, before they became tied to their computers and G-ds of documentation. They are a critical voice in helping to remodel health care. Also, while TEDMED did provide scholarships (and I had registration waived as a journalist), the hefty $5000 attendance fee was likely a barrier to many valuable voices.

Risk vs. Innovation

There was also a theme that I found disturbing—criticizing the FDA for stifling innovation. Neurologist Jonathan Glass and neurosurgeon Nick Boulis, both of Emory University, shared a session and spoke about their work on amyotrophic lateral sclerosis (ALS), a degenerative disease that is inevitably fatal. They stated they are working on stem cell therapies to reverse the disease, but are stymied by the FDA’s definition of “acceptable risk.” On the one hand, I favor the idea that people with horrible diseases should be able to assume greater risks than others. But there have been too many abuses by innovators to let patients assume risk without some oversight and to let such a blanket attack go unchallenged.

Innovation is also tied to patents, prestige and profit. In the case of medical devices, there are very limited clinical trials required for approval and often inadequate follow-up. (See my FDA at a Crossroads post for more discussion of problems with medical device oversight.) And thanks to the Supreme Court, patients cannot sue a medical device manufacturer for a faulty device (Riegel v. Medtronic). Desperate patients will grasp at many unproven treatments. A prime recent example is that of Dr. Stanislaw Burzynski, who charges cancer patients large sums for “personalized gene-targeted therapy.” The National Cancer Institute notes this “antineoplaston therapy” as an unproven treatment. A more classic example is the case of Jesse Gelsinger, an18-year-old boy who was the first patient to die because of a gene therapy experiment. Jesse’s death epitomizes the problems of financial conflicts of interest, where both the investigator and university stood to gain huge profits from this innovative therapy.

So while I laud the efforts to develop treatment for ALS, Huntington’s disease, or other life-threatening illnesses, it seems somewhat disingenuous to claim that patients should be the sole arbiter of “acceptable risk.”

There was considerable food for thought at TEDMED. Having finished the tougher entrees from, I invite you to join me soon for the dessert performances. They were delicious.

 

Credits: Photos of Ivan Oransky, Jacob Scott, Sandeep Kishore, Billie Jean King, Katie Couric courtesy TEDMED;

“Molecules to Medicine” banner © Michele Banks

Judy Stone About the Author: Judy Stone, MD is an infectious disease specialist, experienced in conducting clinical research. She is the author of Conducting Clinical Research, the essential guide to the topic. She survived 25 years in solo practice in rural Cumberland, Maryland, and is now broadening her horizons. She particularly loves writing about ethical issues, and tilting at windmills in her advocacy for social justice. As part of her overall desire to save the world when she grows up, she has become especially interested in neglected tropical diseases. When not slaving over hot patients, she can be found playing with photography, friends’ dogs, or in her garden. Follow on Twitter @drjudystone or on her website. Follow on Twitter @drjudystone.

The views expressed are those of the author and are not necessarily those of Scientific American.



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