Leaf, former executive editor at SmartMoney and Fortune magazines, delivers The Truth in Small Doses: Why We're Losing the War on Cancer and How to Win It. A cancer survivor himself, he shows that despite enormous funding the cancer death rate has changed little in 40 years and recommends steps to change the research system.
You illustrate the difference between perceived and actual changes in cancer deaths by analyzing how rates are reported. Do you recommend a change in the statistics that are tracked?
The question that’s important is “What do we want to measure?” If the aim is to evaluate progress in the fight against cancer, we ought see how much the cancer burden—the number of people getting the disease and dying from it each year, as well as the financial and human cost of the treatment—has changed since the war on cancer began. Unfortunately, pretty much every way you measure it, that burden has gone up, not down.
These statistical tools aren’t good or bad; what matters is if they’re being used for the right job. I believe a compelling comparison for people to look at is between cancer and heart disease. Astoundingly, since 1970, the number of actual annual deaths from heart disease in the U.S. is lower today than it was in 1970, despite the fact that there are an additional 100 million people in the country with an increased overall age. When you compare that with annual cancer deaths, the message is stark.
What would be involved in restructuring the many “research fiefdoms” that you describe into an efficiently-managed research consortium?
We have long encouraged reductionism in biological sciences—the breaking of things into smaller and smaller parts. Researchers study the tiny, individual components of signaling pathways and hope that they will be able to find the broken piece and replace it (or at least figure out a way to stop this flawed part from destroying the machine). That was the rationale behind Gleevec, the wonder drug I discuss in Chapter 5 of the book. And one can understand its appeal.
The fiefdom problem happens because academic scientists are essentially rewarded for being the acknowledged expert in their particular piece of the pathway. There have always been people who rise above this, but it’s hard to do. It can be a career-killer. We ought to reward at least some bright young people for being generalists—or systems thinkers—and not just reward the atomists. By changing the grant structure to encourage more outside-the-dogma research projects, I think we’ll also encourage people to reach further outside of their specialties or research inclinations.
When a highly-successful drug can be so lucrative for its inventor, how can we make prevention more attractive to the research community?
Prevention is precisely the strategy that has paid off—for patients and companies—in virtually every other major disease humans face. The statin story is a great example. Drug companies have made a mint off of statins, and patients have largely benefited from them. Likewise, we’ve used vaccines to great avail against infectious diseases that were absolute killers at the start of the 20th Century. Prevention has been an astounding success story in public health. Perhaps no surprise, one of the recent bright spots in anticancer efforts has been the HPV vaccine.
In each case, we defined the underlying precondition as a disease or condition that should be treated. That made treating it (and therefore, investing in research and therapies) worthwhile. In these cases, the link between the underlying condition or precondition and the familiar clinical disease was more clear than it is in cancer. There’s still some controversy about what precancerous conditions (the intraepithelial neoplasia I write about) will eventually progress to “clinical cancer”. But, as I discuss in Chapter 7 of the book, I think these challenges—while formidable—are also solvable.
You suggest steps to improve the current research methodology, such as redefining clinical trials, forming a national biospecimen network, and creating a centralized Institutional Review Board (IRB). What is the path to implementing these changes?
The biggest positive changes, I think, are likely to come from the outside. A good example is Kathy Giusti, the multiple myeloma patient who ended up founding a paradigm-changing foundation and research consortium (discussed in Chapter 13). It’s very hard for most cancer researchers (veterans and newcomers, for different reasons) to buck the system. In my travels, I’ve met a lot of incredible change-agents who have come from the outside. Some have used their wealth and stature to push for changes in the research culture (Andy Grove, Don Listwin of the Canary Foundation, Steve Case); others, like Virgil Simons of The Prostate Net, have done amazing things on a shoe-string budget and their ingenuity. I think this will continue to be the model for the future. And I hope that we’ll see many more private citizens engage in the fight.
That’s a big reason I set out to report this story nine years ago. I was really hoping that telling this tale—as tough as the message sounds, at times—would energize people to demand change. And I am really optimistic that will happen.
What changes have you observed in cancer research and funding, for better or worse, between your award-winning 2004 Fortune article “Why We’re Losing the War on Cancer (And How to Win It)” and today?
I think there has been far more attention paid to the process of metastasis than when I first started my inquiry. And the study of epigenetics is far more mainstream than it was then. I also think that there is slightly more willingness in the rank and file to question the broken systems, and I am heartily encouraged by that.