Our society overfunds internet firms and underfunds cancer reasearch

The Emperor of All Maladies": Why Our Society Overfunds Internet Companies and Underfunds Cancer Research

This post is part of a series in which Influencers describe the books that changed them. Follow the channel to see the full list.
A few years ago, I was on a train to the airport for a flight to a wedding when my mother called to say that she had cancer.

The train had just stopped to get more passengers. When I looked up, the door was already about to close. I realized then that life is divided into two phases and that the second phase, when you know you’re going to die, is very short.

I got off the train.

What happened to my mother in her second phase would be unbearably dramatic except it’s so commonplace: the bad news, delivered in fluorescent-lit rooms while bridge cards drooped in our hands. The way we lay down together when she was in pain, and how I felt when I could get up to leave. My mom’s announcement, after a manic effort to cook a vast Christmas dinner, that she was very, very tired.

After her death, I picked up "The Emperor of All Maladies: A Biography of Cancer." It’s a strangely intimate epic, from the very first story of one of the author’s patients, a 30-year-old kindergarten teacher who gets a call about a blood test while shopping for a salmon. "Come now," the nurse says when asked about scheduling an appointment for the results. "Come now."

The arrival of a patient with acute leukemia still sends a shiver down the hospital’s spine — all the way from the cancer wards on its upper floors to the clinical laboratories buried deep in the basement...

Carla, I guessed, was sitting in one of those rooms by herself, terrifyingly alone. Outside the room, a buzz of frantic activity had probably begun. Tubes of blood were shuttling between the ward and the laboratories on the second floor. Nurses were moving about with specimens, interns collecting data for morning reports, alarms beeping, pages being sent out. Somewhere in the depths of the hospital, a microscope was flickering on, with the cells in Carla’s blood coming into focus under its lens.

My wife Sylvia, an oncologist who spent part of her training in just such a basement pathology lab, said this description is dead to rights. Sylvia's path lab was led by a Chinese oncologist who could only get work in the U.S. by re-training as a pathologist; he still liked to explain how the cancers he diagnosed would be treated in the floors above. When he saw tissue samples that excited him, he’d exclaim in a thick accent, “GOOD GOD!”

In the first week Sylvia was with him, a sample came down for a 22-year-old man who had been treated before for cancer; the pathologist had tracked the remission of that cancer, seeing the cancer cells responding to treatment from slide to slide. My wife saw the pathologist glance at the name on the new sample, then look through the microscope, then step back as if stung. He pushed his glasses up and wiped his eyes. He had seen a death sentence.

"The Emperor of All Maladies" captures the enormity of this tragedy, and explains the science of the disease, but it also tells stories of people who were saved. Perhaps most moving is its description of the first 15 women in a clinical trial for Herceptin, who were treated on the same day and in the same room:

The lump on Bradfield’s neck — the only tumor in the group that could be physically touched, measured and watched — became the compass for the trial. On the morning of the first intravenous infusion of Her-2 antibody, all the women came up to feel the lump, one by one, running their hands across Bradfield’s collarbone. It was a peculiarly intimate ritual that would be repeated every week. Two weeks after the first dose of the antibody, when the group filed past Bradfield, touching the node again, the change was incontrovertible.

The patient, Barbara Bradfield, had initially refused to participate in the trial; she’s still alive in Puyallup, Washington.

And this is where the book is most important, not just as sentiment but as a spirited defense of what science can do, for Barbara Bradfield and the rest of us. At a time when science is being questioned by a public that frets over evidence-based medicine, vaccinations, genetically modified foods, evolution and global warming, it is a relief to see an Oprah-recommended book discuss Her-2 antibodies.

After all, the entire delicate system underpinning a science-based society — the prestige of being a scientist, the public funding to pursue the truth, the collective will to solve a problem — depends on our humble agreement to act on facts. The world is filled with pyramids, totems and other monuments to societies that died in the thrall of belief systems not based on facts.

To me, one small but sure sign that our society is losing this commitment to science is the mass exodus of scientists from cancer research, often for lack of pitifully small stipends to fund their labs. The federal government sequesters funds or shuts down entirely; grants are stalled or rejected, and clinical trials stop taking patients. Imagine if Twitter had to stop posting tweets until the government restored its funding; budget negotiations would last an hour.

But Twitter’s computer scientists will never know this indignity. Money, talent and prestige are gushing out of science into computer science on a global scale. When my wife began her career in cancer research, what struck me were the similarities between these two disciplines: in both cancer research and online startups, you work day and night on a speculative idea, raising money every two years to pay yourself and your team, earning a lower salary than you could at a larger organization — all on the hope that you can, to different degrees, "change the world."

But today I see how different science and computer science really are. For all the talk about an order-of-magnitude decline in the cost of starting an online company, the money invested in mostly online startups has actually increased 22%, even as the NIH got an automatic, across-the-board 5.5% cut this year, with its purchasing power declining by almost 25% over the past ten years. It galls me when I visit my wife’s lab that research scientists pitch a quarter into a paper cup for a coffee; Redfin caters sushi lunches for our employees.

We see the results everywhere. Venture or angel funds are supporting two different companies for shipping men’s underwear in the mail, a social network for rating your musical taste, an iPhone app for Apple fans to date one another, a polling service for your Twitter followers to vote on their favorite baby name. Meanwhile, even as promising new vistas have opened on cancer research, for training your immune system to attack your cancer, or using computer-powered genomics to tailor drugs based on your DNA, the labs for pursuing these treatments are emptying out.

The problem in our ADD-addled society is that while online businesses succeed or fail in a few years, cancer research takes decades to yield a breakthrough, and rarely focuses on generating the profits needed to be self-sustaining. It doesn't focus at all on self-promotion.

Dropping in on a meeting of the American Society of Clinical Oncologists, I was shocked by the candor and plainness of so many presentations. The researchers chosen to discuss the most significant results more often than not matter-of-factly explained that their life’s work gave patients little or no benefit. No one in the online world ever does that at a TED conference.

Entrepreneurs, once regarded as flimflam men and get-rich-quick wheeler-dealers, are now revered by folks across the political spectrum as the magic-makers of the global economy. I first noticed this watching the presidential debates with researchers. President Obama and Governor Romney appealed to small-business entrepreneurs 24 times; scientists and researchers only once.

Walking past the magazine racks at an airport this morning, I counted more than a dozen cover photos of startup entrepreneurs. No scientists. There must be a hundred new organizations to encourage young people to code but I can’t think of one to mentor folks in life sciences.

What’s cruel about this change is that prestige has been one of the few fringe benefits of a research career. Years after a lab here in Seattle got a notice in The New York Times that would have been cause for a quickly forgotten cheer at a startup, my wife told me that the yellowing clip is still crucial validation for the people working there.

Those people certainly don't do it for the money. One of my wife’s friends was heartbroken after a funding crunch recently forced him to leave research for a job at more than double the pay. While he dressed the salad at a dinner party, his wife told us all the books on his nightstand were still about his research.

We all know that cancer research is important and yet after reading breathless accounts of Tumblr's growth or Twitter's IPO, we somehow forget. In a randomized trial of a drug that seemed to rollback a previously fatal cancer, where half the patients were given a placebo and the other half a new lease on life, researchers recently discussed the possibility that a patient would become violent in demanding the experimental treatment. To gain access to clinical trials, some move to new cities and register under false names. No one has ever done that for an iPhone app.

Every time I hear people say that the most miraculous innovation of our time is a black metal slab for playing Candy Crush at a bus-stop, I wonder whether they have come face to face yet with what it really means to need a miracle. Most of us, with our bare bottom on a cold piece of tissue paper, one day will. But fewer and fewer miracles are forthcoming.

We shouldn't be surprised.

Glenn Kelman is the CEO of Redfin, a technology-powered real estate brokerage. Follow him on Twitter @glennkelman.

The photo is of the author's mother.

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