Thursday, August 7, 2014


This post appeared in this space one year ago, in August.  Just released in paperback, if you are still a paper reader and if you happened to miss Truth In Small Doses, it's a MUST read.  Two other items of note.  Creedmoria, the movie is now in post production.  Brooklyn based (and where I've been spending much of my time this year), I'm feeling a sense of camaraderie with everyone.  Also of note, I'm about one quarter finished with The Cancer Chronicles by George Johnson.  So far, loving that book, too and when I'm done, I will share my thoughts.

Previously posted on August 28, 2013

 At one of the science meetings I attended, a young researcher approached the podium. He was presenting findings. His opening statement said much. I'm paraphrasing.

"I have no financial disclosures to share. I wish I did."

The statement drew laughter from the audience. At the conclusion of many presentations, it may be announced that one or more of the study investigators has ties to the manufacturer of a compound that was part of the study protocol.  It's called transparency. 

In that same spirit, my impressions of The Truth In Small Doses are in no way impacted by the fact that I was sent a complimentary copy of the book by the publisher.  Thank you, Simon and Schuster.  Manners first.  I will say, before the offer was made, I pre-ordered the book for delivery to my iPad, my kindle, my iPhone and even my laptop. The devices know if I've read to a further page on a competing product so I'm not rereading (although, I've deliberately reread many passages to let the words settle into my brain).  It irritates me that my highlighted passages don't sync across all of the platforms. Maybe the developer can fix that?  Also, the kindle lets me tweet passages as I'm reading. That's pretty clever. Just throwin' it out there.....

Alas, a digression. 

Clifton Leaf has written a masterpiece. It is not for the faint of heart. And it's not an easy read for a chemobrain.  I think I've had enough exposure to the science at the meetings I've attended and in grant review panel discussions to grasp the importance of the information Mr. Leaf outlines in painstaking detail.

The details matter. Understanding how early research breakthroughs dramatically changed childhood leukemia from an automatic death sentence to a highly survivable cancer is the foundation for what follows in the latter chapters.  The mechanics of the research is an important facet of many points discussed throughout Truth In Small Doses.

Why are we stuck?  Why hasn't the research progressed in meaningful fashion? The operative word is meaningful.  The first chemo therapeutic agents are discussed. The cocktail that scrambled and rearranged my brain?  Yeah. All three medications were included in the first batch of effective chemotherapy drugs which were developed decades ago. I've bemoaned the lack of meaningful progress in a number of prior posts.

This is not to say that advances have not been made in the forty years since the infamous War On Cancer was declared. There have been plenty of success stories but plenty barely scratches the surface. We should have had far more success than we have to show for 40 years of research.  The recent discussion about the renaming of certain cancers to make them less scary, less ominous isn't the problem.  The real problem lies in the fact that we don't know nearly enough about the many diseases that are cancer.

Mr. Leaf has clearly done his homework.  He elucidates facts and figures.  He doesn't attempt to skew statistics.  Numbers don't lie.  The crude death rate, the number of deaths in women due to breast cancer has barely budged since 1970. Apologies to the men, I don't think you are being ignored, I just wonder how much statistical evidence was collected on male breast cancer in 1970.

In 2010, the number of women whose deaths were attributed to breast cancer?

26.1 for every 100,000 women.

In 1970?  It was 28.4 in the same 100,000 women.

Interestingly, that 28.4 number in 1970?  It rose over the next 20 years to 34 per 100,000 in 1990.  By the end of the century, in 2000, the rate at 29.2 was still higher than it was 30 years prior.

TECHNICALLY, where it counts most, saving lives, we actually digressed from 1970 through 2000.  The modest gain to 26.1 is only seen between 2000 and 2010.  No cancer has been more in the public eye than breast cancer.  On that, I'm sure we can all agree.  Death, I'm sure we can also agree, is the end point we are trying to avoid.  Yes, we will all die one day, but the fact that women are still dying of breast cancer without any real change in numbers is almost laughable.  Almost.  But not quite.  Actually, it's pathetic.  And before another digression ......

Outlining the process by which the bill now commonly referred to as Nixon's War On Cancer was crafted and then adjusted to suit the political climate, although not shocking, is an eye opener.  He discusses the peer review process at great length. Ditto the work required by scientists to prepare a proper grant proposal.  Scientists, Mr. Leaf contends (and I tend to concur) spend far too much time on the grant writing process rather than doing what they should be doing:  Research.

It's not necessarily additional funding that will drive us to truly innovative findings, but simply better management of the whole system.

I'm sure there are those who will pick at certain parts of the book trying to undermine the message.  I'm not an oncologist or a scientist.  I'm just someone who understands the basics and who is capable of applying simple logic when examining the need for change.

The shift is beginning.  We, as patients are more involved in our care.  Some of us participate to whatever extent we can, in the research process.  We understand evidence based medicine from snake oil.  We are getting impatient.  Rightfully so.

There is a series of stellar articles written by Alexander Nazaryan.  He profiled the book in an article for New Yorker.  The day of the release, he wrote about Truth yet again for the Atlantic Wire.  He included a great synopsis in a Books to Read This Summer piece in the same place.

In the New Yorker, many comparisons were drawn between Truth in Small Doses and The Emperor of All Maladies which was written by Dr. Siddhartha Mukherjee.  I had the pleasure of being in the audience as Dr. Mukherjee addressed a very large crowd at the annual AACR meeting.  Passionate and dedicated with an intelligence factor that is off any of MY charts, he was quite engaging.  Emperor and Truth are both important, they are simply written from different perspectives.

I will admit I took a bit of exception with the end of Mr. Nazaryan's article in the New Yorker .  I don't see Leaf as a frightened patient who yearns for a cure and Mukherjee as the sober oncologist concerned with getting the science right.  I don't see one book as a story and the other, an argument.

My only critique of those words lie in the fact it must be acknowledged that each author is looking at the problem through the prism of their own role within the paradigm.  Both parties belong at the table.  Each brings a wealth of experience and each can and will learn from the other.

The tone of Truth has a greater sense of urgency, as it should.  We must be insistent.  Incremental gains that are presently hailed as breakthroughs are not saving lives.  Our lack of the identification of  biomarkers that allow precancerous cells to progress forces many of us to make impossible choices.  WHEN will we finally get around to figuring out how to stop metastasis in its tracks.  Save lives.  The biggest reason cancer is a problem?  Simple.  Death.

Yes, drug toxicity and complications can play into the death of a cancer patient.  Hell.  That's precisely what happened to my dad.  Primarily and in most cases, however, cancer kills when it metastasizes.  In his 2004 article in Fortune Magazine, Clifton Leaf makes a number of brilliant statements regarding the paltry funding for research and our inability to stop a cancer from metastasizing.  That article is the basis for the book.

Everything about Truth In Small Doses screams Disruptive Innovation.  Sometimes, fresh eyes, ones that aren't inside the circle of familiarity, may see ways to disrupt the status quo so that real progress, meaningful progress, may be achieved. It's time for true collaboration.  It's time for partnerships.  It's time to be disruptive.

Clifton Leaf's prose is timely.

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1 comment:

  1. Thanks for revisiting this book AnneMarie. I read it last summer and would encourage anyone who wants to be informed about where we are at and where we need to be in terms of our "fighting cancer" efforts to read this book. It is fascinating, but not uplifting. It's the reality we need to help dislodge this stalemate we seem to be in. Thanks again!


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