How crowdfunding and avenging Steve Jobs could unlock a new way to fund life sciences

By Sarah Lacy , written on October 11, 2012

From The News Desk

Towards the end of Steve Jobs's life, he told biographer Walter Issacson that the silver lining to come out of his illness was that his son, Reed, had become obsessed with cancer research, working with some of the best cancer researchers at Stanford's oncology lab doing DNA sequencing. "His enthusiasm for it is exactly how I felt about computers when I was his age," Jobs told Issacson. "I think the biggest innovations of the 21st century will be the intersection of biology and technology. A new era is beginning just like the digital one was when I was his age."

Nearly every decade very smart people postulate that this the decade that will finally be the decade of biotech. Different things have always held it up: Science, tools, the market, a "Netscape" of biotech, or a company to point to as the model who'd made it big.

The best chance seemed to be in the early 2000s when the cash in the venture capitalists' coffers had gone from hundreds of millions to billions, but the dot com bubble had crashed and investors were looking for new areas to be bullish about. The recent sequencing of the human genome provided some hope that the time was now. Investors like Kleiner Perkins' John Doerr were talking up a revolution in personalized medicine. Billions were raised for specialty healthcare and life sciences funds. And exits seemed more likely too: There were some big hits in Genentech, Amgen, and smaller companies like HIV treatment researcher Gilead, which was a Wall Street darling for a time.

What arguably killed it was something good in the short run, but bad in the long run: Big pharma started to take notice of the promise in biotech along with everyone else. Over a few years, young life sciences and biotech companies morphed into little more than R&D labs for big pharma. It was a near term win-win, given the risk and expense of conducting clinical trials for small companies. Historically, they would need Wall Street to help finance it, and small cap IPOs also fell out of favor during this period, with Sabanes Oxley making the burden on going public while unprofitable that much greater.

You could argue it was good for the world, because big pharma had the heft to make sure innovations came to market, rather than dying for a lack of funding or the whims of an IPO window.

But the problem is big pharma has become, well, too big. And only mass market potential blockbusters move the dial on their earnings. That's why we see a plethora of options if you have depression, erectile dysfunction, or heart disease. But less if you suffer from a rarer strain of cancer or a very specific auto-immune disease. If something can't be advertised during the World Series, it's not a priority.

I mean, pharma commercials are the new dot com commercials these days. I saw more men with penis issues driving pickup trucks and slow dancing with their wives during the A's playoffs last night than there are probably in the whole state of Texas. And while, we're on the subject, is anyone else creeped out by the Abilify commercial where the woman's depression -- which looks oddly like Clippy -- follows her everywhere she goes even after the drug is working? Paul Carr's comment when he saw that commercial, "It looks like you're writing a suicide note. Can I help?"

After a recent article about just how big the gap had become between the way Internet companies are funded and life sciences companies are funded, former drug researcher and 23andme co-founder Linda Avey commented via Twitter, "True. And typical (life sciences) companies need to revamp or die. (So does the typical research model, btw.)"

It may sound too trivial, given the expense and gravitas and decade-long slog of getting a drug approved, but could crowdsourcing possibly be the answer? One group thinks so, and they're an interesting test case, because they have a good marketing hook: Get revenge on the cancer that killed Steve Jobs.

A group of cancer victims and researchers calling itself "iCancer" has launched a campaign on indiegogo to raise $1 million to fund an anti-cancer virus that fights the same kind of tumor that killed Jobs. The potential therapy is ready for human trials, and is -- according to the campaign -- sitting in a freezer in Sweden. The problem? It could best case scenario "only" save thousands of lives. That's not a profitable risk. So far the've raised about $58,000 with 37 days left.

There are reasons donating might give you pause. The name "iCancer" is regrettable. Something about it is hitching itself a little too much to the Jobs bandwagon, particularly given the crew already timed the campaign for the anniversary of his death. And given the lofty message of putting people before profit, it's a little too flippant for my taste. Hanging it on the Jobs peg is dicey: It may motivate fans who want to make a gesture in his memory, but to others it may seem to elevate a celebrity's disease above the suffering of those who didn't create the Jesus Phone.

And -- to be honest -- there's the outside chance this could be a complete scam. There's always that risk with science lay people don't understand, and fund things that aren't real. It looks legit and was sent to me by venture capitalist John Frankel, an investor in indiegogo who was touched by the campaign and donated personally. "The biggest issue to me is that this is the kind of campaign that I think crowdfunding should allow," he said over email. "Something that was just too tough to do in the past because of the friction involved. (It's) UK researchers extending Swedish virus research to cure cancer, (while) raising funding globally. As well as the angle of open sourcing the data, so that patents can't be applied.  It is a real soclal/world-is-flat story."

Avey predicts we'll see more of this. In fact, this week she met a breast cancer survivor who's starting her own crowd-funding organization. "Sometimes a little naivety can be a great thing," she said in response to my question of whether we'd be naive to hope this is a meaningful solution to such a major problem. "Even if they only generate enough interesting data for larger funding organizations (or deep pocketed angel) to take over the reins, it could be a fascinating way for projects like this to get off the ground."

Hey, it worked for watches and robots on Kickstarter. And if we can donate $100 to finance a watch we may never see or an indie movie that does little for mankind, is it so crazy to take a flier on cancer research? Sure fewer people will get this type of tumor than erectile dysfunction. But the stakes are so high, loved ones will be far more motivated to fight back -- to do anything they can to do something, just like Jobs' son was motivated to spend his afternoons in cancer research labs.

You could argue that if successful, this campaign -- which we know little about -- would take $1 million dollars that could go to the American Cancer Society. But increasingly, people feel demotivated to give to non-profit monoliths where there's no sense of where the cash actually goes.

Everyone has a disease that has wracked their family. For me, it's Parkinson's. Both my grandmothers had Parkinson's disease. Most of my memories of my material grandmother are of her falling, or sitting strapped into a wheelchair in a nursing home, her legs covered with huge purple bruises. When I was in my early 20s, my mother -- one of the single biggest influences in my life -- was diagnosed with Parkinsons. It hit me hard, and despite how well she has coped with the disease, and her other-worldly positive attitude, it has continued to hit me each time I see her. Although it's not clear how Parkinson's is passed down, it clearly runs in families. With it on both sides of my family, I've lived since my early 20s with the thought in the back of my head that it's highly likely at some point that I too could start to see the tell tale signs -- or worse, one of my siblings or children could.

Call it morbid, but it's dramatically affected how I live my life. I never to put anything off once I decide to do it -- travel, experiences, writing a book, having children or starting a company -- because I don't know how many good, able-bodied decades I have left.

Still, given what a looming factor the disease has played in my life, I've given more money to Charity:Water than I have to Parkinson's research. Because I just don't know what that donation means or does. If someone launched a campaign like this tied to a Parkinson's treatment? I'd sent the link around to some researcher friends to vet it, but yeah, I'd take a $100 gamble.

It's certainly not the whole answer to Avey's all too true statement that life sciences needs to "revamp or die." But crowdsourcing may just prove an interesting catalyst to reframing the debate.

[Image courtesy Mike Licht,]