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 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.
Even if the iCancer campaign gets enough cash to push the virus into 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 will have to repeat the findings from the Uppsala lab. It 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.
Crowdsourcing won’t be able to help the trials past phase one; testing 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."