Paul Carroll, CEO

Editor's Note by Paul Carroll

At the risk of diverging a bit from ITL’s focus on insurance, I wanted to call your attention to a short, insightful piece that an old friend and colleague from my days at the Wall Street Journal posted on Facebook about problems with how we conduct research aimed at curing the most complex diseases, including ALS, which has drawn so much attention recently because of the Ice Bucket Challenge.

Tom Petzinger spent 22 years as a reporter and editor at the Journal and wrote three impressive books, then left in 2000 — rather than write about the arena, he wanted to jump into the middle of it. He co-founded a venture-capital firm, LaunchCyte, to finance companies that would tackle complex medical problems. He is also executive vice president at Knopp Biosciences, a company that LaunchCyte helped found and that has had an ALS drug in advanced clinical trials.

Tom argues that we need to get beyond the ice bucket and adopt a new, broader approach if we’re to find a cure for ALS and other wildly complicated diseases. I think he’s right. (He usually is.)

Here is what Tom had to say:

“Friends and family: Most of you know I’ve been associated with ALS research for the past decade. The Ice Bucket Challenge is spectacularly heartening, but in my mind raises a cold truth: We need a new paradigm in ALS research itself.

“We all know people who have survived cancer, yet no one survives ALS. There are no breakthrough medicines for ALS, and none are even close.

“You probably know I recently had a front-row seat to one of the greatest disappointments in the history of ALS research—the failure of a promising drug in the largest Phase 3 trial ever conducted in ALS. We do have a path forward for this drug, but in fact the entire field of ALS research needs a new path forward.

“The problem begins with the nature of ALS itself. This is a disease of multiple subtypes, perhaps even a collection of diseases. Yet we conduct one-size-fits all clinical trials, in which even the most promising treatments fail. ALS is spectacularly complex, involving many intersecting molecular pathways, yet any individual scientist typically works in only one narrow aspect of the disease. This reductionism is reinforced by government and charitable funding policy, because a discovery in one narrow area tends to drive more funding to the same area. A “lock-in” effect takes hold, leaving many fresh questions unfunded, unanswered and “locked-out,” especially those questions at odds with the prevailing research paradigm, which, let’s face it, has not yet yielded a cause or a cure, or even a meaningful treatment.

“These problems aren’t unique to ALS research, but they may be uniquely vexing in a disease as complex as ALS. The current paradigm leaves too little funding for integrating specialized discoveries—for systemic, boundary-spanning approaches that cut across funding silos. Attacking a disease that has resisted all attacks demands overcoming research boundaries, not reinforcing them.

“Most of you know how curious my daughter Janis is. Not long ago she joined me for the final morning of an ALS research forum in Chicago before we spent a weekend touring colleges there. The hall was filled with brilliant, dedicated scientists from around the world reviewing the latest work in the field. ‘All of these people do ALS research?’ she asked. ‘And no one knows the cause?’

“A giant THANK YOU to my Facebook family and friends who have participated in or written about the Ice Bucket Challenge, including among others Kevin SalwenNeil AlexanderAmanda Edwards PetzingerAmanda BennettSteve FrazierWalt MossbergJerry GindeleCarolyn E GreenKerri Walker Edwards,Sandra BlockJim MatherLee Carren Ward MatherLorretta GasperGeorge AndersJohn HarwoodJenni FranzJohn YangRachael MarkijohnTom ReinselCathy Cawood Bubash, and Liz Holter. We really needed this shot in the arm, and please keep it up.

“But as the awareness and donations increase, let’s hope we’re providing all of those dedicated researchers with more than just another year or two of funding. Let’s hope they’re now able to ask bold, new questions; that they’ll cross research boundaries instead of remaining stuck in them; and that in discovering new medicines with novel mechanisms they’ll also employ rapid and innovative ways of testing them in clinical trials. Because wrestling this terrible beast to the ground requires more than just more money. It needs new thinking.

“Thanks a million.”

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Paul is the co-author of The New Killer Apps: How Large Companies Can Out-Innovate Start-Ups and Billion Dollar Lessons: What You Can Learn From the Most Inexcusable Business Failures of the Last 25 Years and the author of Big Blues: The Unmaking of IBM, a major best-seller published in 1993. Paul spent 17 years at the Wall Street Journal as an editor and reporter. The paper nominated him twice for Pulitzer Prizes. In 1996, he founded Context, a thought-leadership magazine on the strategic importance of information technology that was a finalist for the National Magazine Award for General Excellence. He is a co-founder of the Devil's Advocate Group consulting firm.


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