Home > Books, Health, Learning > Between books and life

Between books and life

[audio]

Library audiobooks were supposed to save me money.

Unfortunately–or is it fortunately, for other reasons?–I happened to check out Nicholas Nassim Taleb’s Antifragile two weeks ago. I only made it a few chapters in before I realized I’d need my own print copies to highlight, annotate, and reference.

The book was so much more illuminating than anything else I’ve read, I decided to buy the four-book Incerto series it concluded. I listened to two of the three other books, Fooled by Randomness and The Black Swan, while waiting for my Incerto box set to arrive.

Well, other audiobooks will save me money, I thought. So there’s that.

box set.png

The last time I was this excited about a box set, it had “Buffy” in the title

[vignette]

Last Monday, I left work sick. I briefly explained my concerns to a friend.

“Don’t be afraid to take medicine!” my friend replied.

I gazed at her, wide-eyed, quickly weighing the likelihood I could succinctly sum up my position that she should be more afraid of taking medicine. I’d been wary even before I read Wrong: Why Experts Keep Failing Us and How to Know When Not to Trust Them, which I’d finished the week prior. The range of flaws in countless studies, even ones not impacting living, breathing beings, is breathtaking. Considering that such flaws extend* to those with direct impact on living humans, I’d only consider taking most medicines if the alternative was my imminent death.**

Realizing there was no way I’d be able to say any of this succinctly, I changed subjects instead.

[audio]

Nancy Isenberg’s White Trash: The 400-Year-Old Untold History of Class in America was a great listen. I absorbed its presentation of a history silent in most of my textbooks without a single urge to buy the book.

I then moved on to Ben Goldacre’s Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients. For the first couple of sections, I thought I’d be able to just write down a quotation here and there. I wouldn’t need to actually buy my own copy.

I quickly realized I was mistaken. If “the devil is in the details,” the devil took a hundred faces on the first disc of this book alone. I’d need to buy this book for periodic reference, too.

[vignette]

Even when I don’t read blogs for weeks, I make time for doctor Victo Dolore’s blog. While she practices medicine a half a continent away, her compassionate candor is its own kind of balm to my soul.

Her September 2, 2017 post “Needled” is an excellent example of why I love her blog so. In response to the post, I wrote:

I hate that you’re constantly forced to push back, but I love that you do push back. Listening to Bad Pharma here and there as I drive, I feel so sad for everyone who’s being squeezed by a few industries’ drive to maximize profits. It’s easy for healthy non-medics to feel like what’s being squeezed is an abstraction, but it’s not.

It’s lives for profit: lives of patients who make insurance-approved choices that may well cut years (or even decades) off their lives, lives of patients who participate in research under the assumption their participation will improve outcomes for others (versus being shoved in a file cabinet and forgotten for “wrong” study results), the lives of doctors who want to see their patients live full and healthy lives, the lives of those who will someday be but have not yet been impacted by this squeeze, the lives of everyone who love all these people. So, pretty much, all of us.

Hope for better is in the pushing-back against both the practices and idea that profits are worthier of protection than people, and so … you give me hope. Thanks.

She replied:

It IS lives for profit. Once I realized that, I stopped allowing drug reps to have contact with me. I struggle with how to reconcile the profit drive of the “nonprofit” healthcare system with my own values. Being part of it makes certain things easier but how long before I can no longer tolerate the ethics?

[audio]

In Taleb’s The Black Swan, he talks about the often destructive nature of “silent evidence.” What laypeople are often presented is confirmatory evidence, or evidence that something is true.

Unfortunately, no amount of confirmatory evidence can tell you about the cases where confirmation doesn’t hold: the “silent evidence.” This is why the book is called The Black Swan; seeing a thousand white swans doesn’t confirm that all swans are assuredly white. To one who knows black swans exist, the statement “all swans are white” simply implies that the black swans of Australia weren’t included in the sample.

What we haven’t yet seen can be at least as significant as what we have seen–or, in some cases, been allowed to see.

I’ve spent the last year troubled by the idea of silent evidence: all the ways people (self included!) focus in on what we can see without appearing to worry about or seek out what is as yet unseen. I didn’t have words for it and didn’t know if this was something other people worried about, so that finding the words “silent evidence” was doubly a blessing.

The opening pages of Bad Pharma reveal a perfect, perfectly terrifying example of silent evidence: reboxetine. Initial results showed that this was an effective*** antidepressant. A 2010 meta-analysis revealed otherwise:

The meta-analysis showed that an antidepressant, reboxetine (marketed by Pfizer in Europe, but not in the U.S., under the names Edronax, Norebox, Prolift, Solvex, Davedax or Vestra) doesn’t work. Not only does it not work, it really doesn’t work, and it turns out that Pfizer hadn’t published data on the putative antidepressant from 74% of their patients. Some people have reported that the study found that reboxetine was even “possibly harmful,” but that’s not quite true. What the study did find is that reboxetine produced more side effects (noted as “adverse events”) than placebo (as might be expected), but with no positive effects at all. 

Evidence that yielded the desired results was included. Evidence that didn’t, generally excluded. When evidence was silenced, patients were also silenced, and thus other patients subjected to inferior treatment.

If it were just reboxetine, that’d be one thing. But reboxetine is, as Bad Pharma illuminates, merely one tip of a substantial iceberg.

[vignette]

I began disc five of Bad Pharma en route to work this morning. I quickly felt myself growing distressed by each new detail revealed. My drive to work is already long and stressful enough without adding to it!

I stopped the disc and made a mental note to order the print book. As my mind wandered away from the discs and toward the book itself, I thought how much I’d like to discuss it with other people–how good it would be to discuss and dissect it in a community. Rather than being quietly heartsick about all the lives impacted by what I’m discovering, I could learn with other people, and celebrate the process of mutual discovery.****

While the information itself sometimes inspires grievous heartache, there’s power learning to see beyond small bodies of confirmatory evidence … to the vast bodies of silent evidence outside them.

* See here for brief exploration of how “evidence-based medicine has been hijacked.” 

** This is my own very personal assessment. I am emphatically not advocating a particular path for anyone else!

*** This book is a great reminder how important it is to explore what things like “effective” mean in a specific context. The results can be horrifying.

**** If you would like to explore this book with me–as part of a community, with no one the teacher and none the student–please let me know. I have a rough plan for this and will follow up via your comment email address shortly.

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  1. September 21, 2017 at 1:57 pm

    As somebody who participated in the drug trials of Reboxetine here in FL, I was devastated when approval was withheld because efficacy was not widespread enough. It was and still is the only med to truly help me. Yes there were some side effects, but not bad enough that I wouldn’t have continued taking it if it was available.

    • October 1, 2017 at 8:38 am

      I’m sorry.

      • October 1, 2017 at 6:26 pm

        No need for you to apologize, just stating facts. Just wanted you to know that the author, the stats he quoted and the book were not 100% right. Reboxetine did help some people, just not enough of us to matter. And it sucks when you’re in that small group and realize that you don’t matter enough to put/keep a drug on the market. That whole “no positive effects at all” quote really bothered me because it’s 100% untrue if it helped only one person, such as me.

        • October 2, 2017 at 7:21 am

          This comment actually highlights another concern raised by the book, and one I wasn’t much thinking of as I typed this post: the impact of science journalists, whose understanding of the science often leads to misleading reporting. This is a great example of collapsing critical info in the name of succinctness, or–where going for “the gist” loses key nuance. I think this is always going to be a challenge in an informationally overloaded environment. How is a science journalist (or a blogger concerned with how many people die needlessly because of bad science) supposed to capture all that nuance in a paragraph or two? That’s why Bad Pharma’s author wrote a book, after all, and why I am so concerned (outside this convo!) how few people read non-fiction books on such matters. What can be communicated in a short piece diverges greatly, in length, framework, AND content, from what can be communicated in longer ones.

  1. September 24, 2017 at 8:27 am
  2. October 1, 2017 at 11:58 am

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