Seth's Blog

I decided to read this book review because of a brief description (“A father describes, and rages at, the loss of his teenage son.) in an email. Then I found this:

Weber’s story becomes more spirited and urgent when Damon’s health begins to fail more seriously, and his father is forced to locate his true enemy: the received wisdom and arrogance of the American medical establishment.

Weber père . . .  admits he doesn’t trust “any single voice on Damon’s illness.” And he’s wise not to, as he discovers in short order that health care for his son is first and foremost a business, and that surgeons frequently talk out of their hats.

Heart transplants represent big money for hospitals: at half a million dollars each, 20 pediatric transplant operations a year make a significant contribution to the finances of New York-Presbyterian ­Hospital/Columbia University Medical Center, where Damon’s surgery is eventually performed. Hospitals compete to attract patients (every transplant center Weber speaks with wants to perform his son’s operation) and stringently guard their surgical outcome data, as Weber discovers when he tries to find out if the blithe assurances of the Columbia transplant team are scientifically valid. He quickly realizes “each hospital is a fiefdom.”

Worse still, the medical barons who run the fiefs care as much [i.e., as little] for protocol as they do for patients. Over Christmas of 2004, Damon is casually “listed” as a potential heart recipient — meaning he has to be ready to receive a new heart at a moment’s notice — without his father’s knowledge. His doctors then disappear for a week and more.

Before Weber can truly blow his stack, he discovers Damon’s doctors have also misclassified his son’s transplant status as less urgent than it is. Dad bulls [sic] them into fixing the problem, and 11 days later, a heart is found for Damon. The transplant in turn initiates a tragic cascade of doctor errors so egregious that Weber eventually sues both the medical director of pediatric heart transplants at New York-Presbyterian Columbia hospital and the hospital itself for malpractice. (Three years into the lawsuit, the medical director claimed Damon’s post-op records couldn’t be located.) All this happens at one of the country’s best heart transplant centers.

“Passively relying on the medical establishment and trusting them to manage my son’s care in his best interest is not . . . a luxury I have allowed myself,” Weber writes, with good reason.

Maybe I should start a series called “The Culture of Surgeons”. Entry 1: Eileen Consorti, a Berkeley surgeon who told me I should have surgery for a hernia I could not detect. Entry 2: Martin  Burton, an Oxford ear nose and throat surgeon whose Cochran Review about the pros and cons of tonsillectomy failed to consider that tonsils are part of the immune system.

• Big Pharma versus Parkinson’s disease — perfectly good non-Big-Pharma treatments (ECT, nicotine, caffeine) are neglected in favor of a much worse Big-Pharma treatment (L-dopa).
• Substances high in Essential Fatty Acids, such as evening primrose oil, used to treat  allergy-associated problems (case reports). From the 1980s. Other articles from the Foundation for Integrated Medicine.
• Artisanal sake survives the tsunami and makes an accidental discovery.
• Food tour of Tokyo by Jeffrey Steingarten.
• Should England’s Royal Society be taken seriously? Judging by their leaders’ certainty about global warming . . .
• 60 Minutes covers the Anil Potti scandal at Duke University.

Thanks to Allen Carl Jackson, Phil Alexander and Navanit Arakeri.

Bryan Castañeda, who lives in Southern California, told me this:

The law firm I work at specializes in toxic torts. We represent people who have been occupationally exposed to chemicals and are now sick, dying, or dead. Most of our clients have been exposed to benzene and developed some kind of leukemia. We sponsor various leukemia charities, walks, and other events. [On January 21, 2012] in Woodland Hills, CA, the Leukemia & Lymphoma Society held its first annual Blood Cancer Conference. Although the speakers were mainly doctors, it was a conference meant for laymen. The chair was an oncologist from UCLA Medical Center.

After introductory remarks and the keynote speaker, there were several breakout sessions. I attended a session on acute lymphoblastic leukemia and acute myeloid leukemia. The speaker was [Dr. Ravi Bhatia,] a doctor specializing in leukemia from City of Hope in Duarte, CA. His talk was almost exclusively about new drugs and clinical trials. Very dry and dull. Things got more interesting during the question period. At one point, [Dr. Bhatia] told an attendee not to experiment on his own because “you won’t learn anything and others won’t learn from it, either.”

I would have liked to ask Dr. Bhatia three questions:

1. What’s the basis for this extreme claim (“you won’t learn anything and others won’t learn from it”)? Ben Williams, a psychology professor at UC San Diego, wrote a whole book (Surviving “Terminal” Cancer, 2002) about taking an active approach when faced with a very serious disease (in his case, brain cancer). Likewise, the website Patients Like Me is devoted to (among other things) learning from the experimentation of its members. Lots of forums related to various illnesses spread what one person learns to others. MedHelp has many forums devoted to sharing knowledge.

2. What’s so bad about “learning nothing”? Why should that outcome stop one from trying to learn? It doesn’t seem like a good enough reason.

3. Do you have a bias here? In other words, what do you want? Do you prefer that your patients not self= experiment? Doctors may prefer that their patients not experiment for their (the doctors’) own selfish reasons. When a patient self-experiments, it makes their doctor’s job more complicated and makes the doctor less important. If Dr. Bhatia is biased (he wants a certain outcome), it may bias his assessment of the evidence.

• Drug industry now the biggest defrauder of the US government, as measured by False Claims Act payments.
• CT scans linked with cancer. Even worse, “doses of radiation from the scans varied wildly, according to the study, even within the same procedure at the same hospital. Some patients got only one-tenth the radiation that others got.” As if the concepts of calibration and maintenance are foreign to the operators of this exceedingly dangerous equipment.
• Fermentation in Montreal.
• Edward Jay Epstein on Hollywood’s Pirates of the Internet.

Thanks to Hal Pashler and Anne Weiss.

The blog Science-Based Medicine ran a long critical comment about my recent Boing Boing piece (“Tonsillectomy Confidential: doctors ignore polio epidemics and high school biology”) followed by a back-and-forth (my reply, their reply to my reply, on and on) in the comments.

The exchange had three curious features.

1. In Tonsillectomy Confidential, I described how Rachael critically evaluated what a naturopath told her:

Rachael and her son went to see a naturopath that a neighbor had recommended. The naturopath was especially knowledgeable about nutrition and supplements. After an hour interview, she suggested Vitamin D3 (5000 IU/day), a multivitamin, Vitamin C (500 mg/day), and powdered larch bark. Rachael searched for research about these recommendations. She found many studies that suggested Vitamin D might help. Her son is a pale redhead and used sunblock a lot. It was easy to believe he wasn’t getting enough Vitamin D. Because Vitamin D won’t work properly without other vitamins (called co-factors), a multivitamin was a good idea [Rachael discovered during her research]. Rachael found studies that implied that a multivitamin was very unlikely to be very harmful. She found few relevant studies about Vitamin C. Maybe extreme claims about its benefits had scared off researchers — “Linus Pauling burned that bridge,” said Rachael. But she took the Vitamin C recommendation seriously because the naturopath had made other reasonable recommendations, the recommended dose was not large, Vitamin C is easily excreted in urine (in contrast to building up in the body), and Rachael had never heard of anyone having trouble at that dose. The naturopath had said that larch bark had reduced ear infections in children with chronic ear infections. A little bit of theory supported this, Rachael found, but overall the larch-bark research was “dodgy,” she said.

This was described by the Science-Based Medicine critic (Steven Novella) as “blatantly not evidence-based”.

2. In my first reply to the criticism, I wrote:

In other words, there is some evidence supporting the value of larch bark (“early laboratory evidence”) and some evidence (“a more recent study in mice”) not supporting the value of larch bark. Given this, to say “available scientific evidence does not support claims . . .” is false. An accurate statement is that some evidence does and some evidence doesn’t.

This got the following reply from a second critic (David Gorski):

No, Seth. Note two words Steve used, “in humans.” Steve was quite correct. If there is only a preliminary animal study, even if positive, that does not support the efficacy of larch bark in humans.

Apparently Gorski thinks animals (e.g., rats) and humans share no DNA. A few sentences later, contradicting himself, he notes that animal studies are used as screening tests.

3. Finally there was this, from Steven Novella:

It is fine to search for information yourself, and no one here is advocating “blind trust” in anyone. We are all activist skeptics. But it is folly to substitute one’s own opinion for that of experts who have spent years mastering a subject.

What a lovely motto for this blog: “It is folly to substitute one’s own opinion for that of experts who have spent years mastering the subject.” And, after all that study, think animals and humans share no DNA.