“Only four (4) U.S. Food & Drug Administration-approved therapies in the last 30 years”

That’s quote from the National Brain Tumor Society website posting regarding “Clinical Trial Endpoints”: http://braintumor.org/advance-research/integrated-initiatives/clinical-trial-endpoints/

 

Does four (4) seem low to you? It seems low to me.

The NBTS posting puts that in perspective: “With nearly 700,000 Americans living with a brain tumor, and only four (4) U.S. Food & Drug Administration (FDA)-approved therapies in the last 30 years, and no cure – the needs of the brain tumor community are clear. Brain tumor patients need new therapies that will either eradicate their brain tumor or better manage the tumor and its manifestations; as many brain tumor patients also experience adverse changes in their physical, cognitive, and psycho-social well-being which significantly impacts their ability to maintain ‘normal’ lives while receiving treatment.”

A couple of numbers popped out of this paragraph and uncomfortably whacked my eyeballs: “four (4)”, “30 years” and “700,000”.

We continue to spend significant $ (and $$$) on research and have only got four (4) new approved therapies in the last 30 years? What’s going on?

While I’m not smart enough or insightful enough to diagnosis this issue, I think part of it traces to Clifton Leaf’s observation that “the public’s immense investment in research has been badly misspent”. He notes that scientists seldom collaborate and share their data, why new drugs are so, so expensive and why young scientists are “…now abandoning the search for a cure.”

If you want to know more I highly recommend that you read his well-researched and documented book, “The Truth in Small Doses”: http://www.amazon.com/The-Truth-Small-Doses-Cancer/dp/1476739994

At the same time, I am more than glad that the NBTS is attempting to bring all the disparate parties together to, well, work together.

It’s about time.

John

PS - Sorry, I just don't have the energy today to write the right amount of outrage or incredulity into this post. Feel free to add your own.

Ketogenic Diet for Brain Tumor Patients: ABTA Webinar

When the American Brain Tumor Association announced an online webinar about the Ketogenic Diet, I realized that alternative medicine and the Ketogenic Diet have gone mainstream (at least for brain tumor patients).

I’ve been reluctant to jump on the Ketogenic bandwagon because I’ve read blog/victim posts about the diet working and about it not working. I also worry that some alternative medicines are being promoted without the scientific rigor and examination that traditional treatments have had.

At the same time, I also worry that traditional western medicine isn’t open to new or alternative or creative solutions to our ongoing brain tumor problem. In fact, Clifton Leaf’s wonderful book – “The Truth in Small Doses” – makes clear that our current system for evaluating new solutions for combating cancer is hugely flawed and practically shuns creative, out-of-the box solutions.

So if you’re a victim or caregiver or friend or family member affected by brain tumors, here’s the promotional blurb for the webinar: 

“More and more patients and families are turning to integrative medicine to fight their brain tumor diagnosis.  One such integrative treatment is the Ketogenic Diet. Join Leonora Renda, RDN, of University of Arizona Cancer Center at St. Joseph’s Hospital and Medical Center as she discusses what the Ketogenic diet is, how to achieve ketosis, the challenges associated with this specialty diet and the results that have been seen thus far in the research studies.”

You can read more about the webinar and sign up for it here: https://www3.gotomeeting.com/register/666442558 

And here's a link to info about Clifton Leaf's book: http://www.amazon.com/Truth-Small-Doses-Losing-Cancer-/dp/1476739994/ref=sr_1_1?s=books&ie=UTF8&qid=1412177121&sr=1-1&keywords=the+truth+in+small+doses 

Copyright: <a href='http://www.123rf.com/profile_radiantskies'>radiantskies / 123RF Stock Photo</a>

Brain Cancer Research: “If it were working, we’d have drugs by now”

That’s a quote from Jennifer Helfer, associate director of program initiatives at the National Brain Tumor Society. 

I snipped it from an honest and instructive article by Don Seiffert, BioFlash Editor-Boston Business Journal.  Here’s the first three paragraphs of his story:

“While cancer may be the most common disease targeted by biotechs, very few are pursuing cancers of the brain, but a Newton nonprofit is raising $10 million a year to help change that.

The National Brain Tumor Society, formed in 2008 through the merger of two other groups, aims to identify barriers to research into brain cancer and then develop programs to knock those barriers down, said Jennifer Helfer, associate director of program initiatives at the organization. Current incentives for drug development among for-profit drug companies and biotechs are not working, Helfer said.

‘If it were working, we’d have drugs by now,’ she said. ‘One of the aspects we are pursuing is to incentivize more efforts in industry.’”

This reminds me of Clifton Leaf’s important book entitled The Truth in Small Doses which thoughtfully examines why we’re “Losing the war on cancer”.

While it’s depressing to see industry leader admit that we’re doing a poor job of tackling brain cancer, it is heartening to see the NBTS efforts at creative problem-solving.

I invite you to read Seiffert’s article at: http://www.bizjournals.com/boston/blog/bioflash/2014/02/newton-non-profit-aims-to-overcome.html

When you’re done, you may want to zip over to your nearest library and check out Leaf’s terrifically researched book. Or you can buy a copy here: http://www.amazon.com/Truth-Small-Doses-Losing-Cancer-/dp/1476739986/ref=sr_1_1?s=books&ie=UTF8&qid=1374599695&sr=1-1&keywords=clifton+leaf+the+truth+in+small+doses  

Image credit: <a href='http://www.123rf.com/photo_9162870_human-brain-medical-scan.html'>woodoo007 / 123RF Stock Photo</a>

Book Review: “The Truth in Small Doses” by Clifton Leaf*

This is an important book about an important topic: “Why we’re losing the war on cancer – and how to win it.” http://www.amazon.com/Truth-Small-Doses-Losing-Cancer-/dp/1476739986/ref=sr_1_1?s=books&ie=UTF8&qid=1374599695&sr=1-1&keywords=clifton+leaf+the+truth+in+small+doses

I give the book five stars for explaining “why we’re losing the war on cancer.”

The statistics Leaf provides to back up his assertion that we’re “losing the war” are absolutely compelling. If you read nothing else, read Chapter I – “Counting” which spells out very clearly that we are not winning the war on cancer.  

As I read this section it seemed to me that we’re getting the least bang for the buck that we’re investing in this war. It feels like we have a system that dilutes the “war on cancer” into numerous skirmishes that are not helping win the war or even a strategically important battle or two. The reason, in his opinion, is a “dysfunctional cancer culture.”

Leaf writes that he was driven to write this book because “If the efforts to win the fight against cancer were paralyzed by a dysfunctional cancer culture, how did we get here? Those five words – ‘How did we get here’ – became the focus of my life for the next nine years. They are, indeed, the core of this book.” In reading that I clearly got the sense that he not only has “skin in the game,” most of his body and waking thoughts are in the game, too.

The book has four sections:

Part I describes the enormity of the cancer burden – a burden that is rarely understood and horrifying when it is.

Part II “shows why the scientific strategy we have chosen cannot succeed in lessening the terrifying human cost of cancer.”

Part III examines the “dysfunctional cancer culture” in copious detail. Commonly found words in this section are “fiefdoms” and “lack of collaboration/synergy.”

Part IV provides some “tough love” medicine for healing this broken and dysfunctional system.

As an guest editor for the New York Times Op-Ed pages and a previous executive editor at both the Wall Street Journal’s SmartMoney magazine and Fortune magazine, Leaf is a good writer. He takes complex science and process issues and writes these issues about them in the simplest way possible.

Sometimes, though, “the simplest way possible” made me wish I’d remembered everything I should have learned in high school biology.

To counteract the density of the science, Leaf often illustrates his point with a very human tale about how some doctor or scientist made a significant impact in the war against cancer. I particularly liked the story about the Irish, one-eyed surgeon Denis Burkett and his 10,000 journey to “help solve the mystery of the African lymphoma.”

Who should read this book?

I hope that everybody involved in cancer research reads this book.

I wish that folks who control cancer research grants are required to read this book.

I want my doctors to read this.

And I yearn for every government officials involved with the “war on cancer” to read this.

Should cancer victims, caretakers and friends/family read this book? Maybe. This isn’t Gone Girl or The Inferno or And the Mountains Echoed. Leaf packs tons of important context into his stories and science into his explanations. As a result I had to reread several sections and probably still don’t understand the bits regarding anything happening at the cellular level.

I do hope that Mr. Leaf comes to the Chicagoland area because I’d love to listen to him talk about his book and the “dysfunctional cancer culture.”

*Yes, this is “Part II” of my review of his book. I received the book for free but didn't receive any inducement to write a favorable review. If folks want me to review their books in the future, though, please keep in mind that I really like a nice scoop of hazelnut gelato.