Tuesday, April 13, 2010

Snake Oil Salesmen R Us

Since my diagnosis of lung cancer back in September, I've come to see my life journey take a few unplanned and unexpected detours. It's a multi layered, shorter version of what I had envisioned, but it's rather more in focus these days because, well, mortality does that to you.

Some of the unexpected detours I've taken, have been to various cancer sites on the internet. There are blogs such as mine, that I visit and try keep up with the authors, such as my friend and former college classmate, Louisa, who is struggling with stage IV ovarian cancer. Then there are the sites formed to be a community for those suffering from the same sorts of cancer. There's the Inspire site, and there's the LungLove site, and there's probably more out there that I have not found yet. I've been going to the Inspire site for about two months now. And there's a lot of pain and death on there. Lung cancer is not gentle and it is not lazy. It kills rapidly, particularly as symptoms don't manifest until the disease is in its last stages. And successful scientific treatment modalities are rare or in their infant stages.

As a result, there are many very fearful, desperate people out there, whether they are the patients or their loved ones who are their caregivers. And, desperate, fearful people are a class of folks that are easily victimized. We see this throughout American history. And we've named such medical quacks Snake Oil Salesmen. Earlier in my life, I thought that perhaps most snake oil salesmen went out of business with the death of patent medicines such as Serutan ("that's 'nature' spelled backwards). I think it was the sponsor of the Amateur Hour on early television. But what I've found, particularly on the chat board at inspire.com is that these snake oil salesman have transformed themselves from the stereotype pictured above and sound just as educated as medical doctors. In fact, some of them are medical doctors. But what this group of hucksters has for customers today are not the bumbling small town yokels of yore, but folks like those I've met on the cancer community websites who are not being helped by FDA approved chemotherapy or other cancer treatments. This is a remarkably potent audience for modern snake oil salesmen, one that will pay whatever it takes, if they can just be convinced that the coffee enemas, the electronic zappers, the colon cleanses, or the shark cartilage injections have cured someone else's cancer, and thus are likely to help cure them.

How is it that we, some of the best educated people in the world, can fall prey to sharpsters like these? I think it's a combination of desperation when conventional treatments don't work, combined with a failure to understand modern day science. Gene splicing techniques and much of the logic behind gene therapy is not easy to comprehend for most people. Furthermore, understanding statistics remains more like reading Greek, even to those journalists paid to report on it--witness the confusion over the results of some study about the effect of birth control pills on breast cancer rates actually mean. I remember reading hysterical accounts in the press about this several years ago, and then my OB/GYN telling me that the actual increase in cancer rates from taking birth control pills was minuscule at best. Is it any wonder then that so many in the US become disillusioned with modern medicine?

My feelings on this subject came to a head tonight when I watched New Yorker science writer Michael Specter on Ted.com. I recommend that you click on the link and view it for yourself. The one point from this video that I took away, and it should be emphasized again and again, is that you can have your own opinion, but you are not entitled to your own facts. My own favorite admonition along these lines, as my loyal readers will recall, is:  the plural of anecdote is not data.

This disregard and dismissal of modern day science must stop, else we return the human race to the nasty, brutish and short existence that predated the introduction of vaccines.

I am not very good at pointing others' defects in reasoning out to them without sounding snide or superior. Rather like Michael Specter.  I am still working on a way to try to enter into a convincing dialogue with some of those members on Inspire, for example, who think that the American Cancer Society is in the back pocket of the pharmacy industry, and who are busy recommending to other members that they try the latest naturopathic remedies.  Some are even touting laetrile these days!  I just haven't figured out how to break through their fears to reach them.


The Subtle Rudder said...

My dad's crazy uncle used to roadtrip down to Mexico for laetrile, wearing copper bracelets on both wrists. Then again, I sometimes wonder if I'm just tossing money in hole when I go to the health food store and lay in a supply of oscillococcinum and echinacea. Sigh.

I imagine fear and hope ratchet up in tandem, when you're facing something huge like cancer. I love the idea that the plural of anecdote is not data, but I think we're such a story hungry people, that a compelling narrative often trumps fact--especially when you're desperate.

Looking forward to the TED talk...thanks for the tip.

Anonymous said...

Maybe you shouldn't try to reach them. They aren't going to hear you. Like you said, fear is a great motivator. And unfortunately modern medicine hasn't been able to come up with acceptable treatments for everyone. If strengthening your immune system isn't the cure, it still might help with QOL issues. The side effects from chemo are brutal! I'm on my way to my "boutique" cancer treatment center to try acupuncture for neuropathy and meet with a naturopath and a dietitian to try and address some of the side effects I'm having. I'm also going to get another dose of poison, hoping that the cancer responds and the rest of my body doesn't. We're all traveling a crappy road here, and sharing what has made it easier is much appreciated on my end. Anything I can do to keep me out of the bed and moving forward is a blessing. Take good care!

Jolene said...

"I sometimes wonder if I'm just tossing money in hole when I go to the health food store and lay in a supply of oscillococcinum and echinacea."

You probably are, at least w/ regard to echinacea. There's a new study on this that's been in the news in the past few weeks. Might be better to buy a good bottle of port to ease the pain when colds come on.