Instinct tells us that if word got around and the right people got behind it, money would not be a problem. This is 2012. There are allegedly too many dollars (or euros or yuan or rials...) chasing too few good deals. And with crowd-sourcing, the path to a solution could or should be even clearer. We live in an era where good ideas find their level, right?
Well, yeah. Except that we also live in an era where intellectual property rights have become an intimidating source of economic power. Apple itself has slugged Samsung with billion dollar IP suits this year - twice. Corporations plan strategic campaigns around patent maps so as to outmaneuver competitors like a general staff of latter-day von Clausewitz's.
So while the science may be compelling, the route to ownership and profitability may not be. As the following article explains, Swedish researchers have identified a potential antidote to the types of tumors that ultimately killed Steve Jobs. And crowd-sourcing financial support might be able to raise enough to underwrite an initial round of clinical trials. But if the first round succeeds, the cost increase goes exponential and Big Pharma needs to get involved. The problem is the ownership question. If this is really a breakthrough, the crowd-sourcers will want to keep their stake and there will not be enough left for the pharmaceutical giants to clear their hurdle rate, let alone actually make significant profits.
Steve was into control, so he would get this. But it does raise questions about where we're headed as a society. Marie Curie, Jonas Salk, Crick and Watson and a host of other scientists managed to contribute to global health and lead pretty comfortable lives. Yes, times were different, intellectual property was a less sophisticated game and obtaining rights was less of a blood sport.
One senses, however, that we may have lost sight of the point of all this effort. It was not, originally, about control or power or even profit. It was about providing answers that solved problems. And made the world a better place. Maybe we will have to suffer the effects of our own lost opportunities before the impact of that change causes us to rethink the process that led us to where we are now. JL
Ariel Schwartz reports in Fast Company:
There is an experimental, cancer-killing virus sitting in a freezer in Sweden right now, but no pharmaceutical company wants to pay for its clinical trial. Maybe you do? When Steve Jobs died last year at age 56, we heard a lot about the pancreatic cancer that killed him. What few news reports mentioned is that the Apple founder had a neuroendocrine tumor--a kind of tumor that affects hormone-producing cells. These tumors are rare, they generally can’t be cured by chemotherapy when they’re malignant, and they can occur throughout the body.
Because they are so rare, neuroendocrine tumors (NETs) have limited treatment options. One potential treatment, a genetically engineered virus that replicates inside NETs and kills them, is sitting in a freezer in Sweden, unused. A group of cancer survivors, advocates, and researchers are hoping to get it into clinical trials with a little help from the good people of the Internet (and Indiegogo).
The NET-killing virus was developed over a number of years by a group of researchers at Uppsala University in Sweden. It’s promising, but pharmaceutical companies haven’t been eager to get onboard, partially because of the expense but also because patent protections on the research aren’t that strong (the researchers were eager to publish their findings).
When Alexander Masters, a British author who has a friend with a NET, found out about the research--and that it would cost just over $3 million dollars to kick off a phase-one clinical trial--he traveled to Sweden and wrote an article in the Guardian about it. That article, along with a subsequent piece by British reporter Dominic Nutt, began to heighten awareness of the potential treatment.
Initially, Masters and Magnus Essand, the leader of the Swedish research team, hoped to raise the money to start a clinical trial from a single individual, with the promise that the virus would be named in their honor. But it soon became clear that people wanted to contribute smaller amounts of money. So the group set up a PayPal account that has already raised about $67,000. They soon capitalized on the account’s popularity by launching an Indiegogo campaign, asking people to donate money (they’re looking for $1,618,000) to get the trial going. Rewards include acknowledgement on scientific papers and meetings with the Swedish research team. The ultimate reward of having the virus named after you is still available for the price of--you guessed it--$1,618,000.
“”The virus we have is the first one that has been genetically designed to treat neuroendocrine tumors.
The so-called iCancer campaign has raised $82,213, with 25 days of fundraising left to go. That’s not enough. "We could continue research and develop new versions of the virus, but we need at least one million pounds to be able to produce the virus at clinical grade," says Essand.
If the iCancer campaign can get enough cash to push the virus to clinical trials, that doesn’t necessarily mean anything will go to market. The phase-one trial will look for toxicity, the phase two trials look for efficacy, and in the phase three trial, other institutions have to repeat the findings from the Uppsala lab. The whole process can take up to 15 years before a commercial product is ready. At any point, the trials could be foiled. But there’s just no way to know without trying.
Editor’s NoteIn other cancer news, meet the precocious 15-year-old whose invention is changing how we test for the disease.
Crowdsourcing won’t be able to help the trials past phase one; it gets too expensive, and costs rise to hundreds of millions of dollars by phase three. That’s when big pharma would have to take over. And while they might be skittish about patent protections at this point, that could change if initial trials go well. "If we can raise money for a clinical trial and it’s still promising--you never know, of course--there should be sufficient patent protection for a company to get interested," says Essand.
This isn’t the first time a virus has been used in NET treatment. "An American company has run a trial with a different virus for NETs. They have reported some of the data, but they haven’t been publishing for the last three years or so," explains Essand. "The virus we have is the first one that has been genetically designed to treat neuroendocrine tumors."
Essand and his team have also developed a similar virus to treat prostate cancer. That virus is on the verge of getting tested in a phase-one clinical trial in the Netherlands.
As for Apple? The iCancer team did ask them to pitch in, but they were told by the computing giant that "at this time they feel unable to help."
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