Vanity virus cures fund gap for medical research

Vince Hamilton leaned forward across the breakfast table at the Haymarket hotel in London in early 2014 and described the parallels between prospecting for oil and discovering a new medical treatment. Both take a long time, considerable money and have a low probability of success. “You hope that time is on your side,” he said.

As a Canadian geologist who had spent his career in the oil business, he could draw on many years’ experience of the challenges, setbacks and occasional victories in identifying new reserves of natural resources. Now he was applying his skills and wealth — mostly acquired through important oil discoveries in Oman — to his new focus.

For him, this was no mere abstract intellectual discussion. Since his diagnosis in 2011 with neuroendocrine cancer, the same condition that killed Steve Jobs, the founder of Apple, he had a personal interest in overcoming the setbacks of medical research.

Hamilton, who married a Swede and worked at the Swedish oil group Lundin before founding Tethys Oil, sought treatment for his condition from doctors in Uppsala. But it was many more months before he found a way to apply his skills more directly in the search for a treatment.

His experience offers broader lessons about the difficulties of medical research and the potential for fledgling methods of online “crowdsourcing” to help fund important work tackling poorly treated conditions.

Alexander Masters, a British novelist and author, had also come across cancer specialists at Uppsala. He turned to the internet in search of options after a close friend was diagnosed with neuroendocrine cancer in 2010.

“I came across weird experiments in New Mexico, quack clinics in London and then one day I stumbled on a lecture on YouTube on a promising approach,” he recalls. By zooming in and freezing the video, he managed to decrypt the name of an organisation, a scholarly article and eventually the author, Magnus Essand. He called, and then visited him at his laboratory.

The Swedish academic’s idea was to use an “oncolytic virus” — a genetically modified virus that would track down cancer cells in the human body, infect and kill them. Some other experts supported his approach, but in a fiercely competitive field, he had struggled for two years to find the funds to take his research to the next phase — the move from animal testing to trials in human patients.

After meeting the professor, Masters pondered how to raise the relatively modest $2.85m the professor estimated was required. He reasoned that “greed, vanity and self-interest” were the obvious motivations for potential funders.

Yet self-interest would prove difficult. The prospects were slim that a funder such as a pharmaceutical company or an angel investor would support the work in exchange for a share of profit if it succeeded. Essand had already published widely on his research, sharply reducing the prospect of patenting his discoveries to protect or generate returns for a commercial partner.

The most obvious alternative motivation led to what Masters dubbed his “Vanity Virus Initiative”; he hoped to tap rich donors such as City bankers with a conscience, who would have a chance of immortality. Their donations would be acknowledged in future scientific papers. If they provided £1m, they could even give their name to the modified virus.

At first, he planned a website to solicit donations. Then the Financial Times picked up the story, with a gently teasing article on the “naming” opportunity the virus research offered as a gift for the person who already had everything. It was read by a man being treated in a hospital bed just a few hundred metres away from Essand’s laboratory with a far more personal motive: Vince Hamilton.

The result was a series of lengthy conversations over science, budgets and process, says Essand. Hamilton ultimately pledged SFr2m ($2m). He pushed for a business plan and helped negotiate reduced manufacturing and other costs. The two men also discussed the ethical issues, including the option of him receiving the experimental treatment alongside trial patients.

After the launch of the Oncolytic Virus Fund donation website, and before Hamilton’s donation was made public, Uppsala received nearly 2,000 individual gifts totalling more than $700,000. That makes it one of the most successful crowdfunding medical sites to date.

Others, such as consano.org and experiment.com in the US, have generated smaller amounts for a wider range of health projects. “We think there are thousands of great ideas not making it to market,” says Alex Fair, the founder of medstartr.com. But it also suggests the importance of high level publicity, rigorous science and luck. “You have to engage, excite and give people a way to take part in the action.”

Sagit Weiss, who has launched crowdacure.com, which focuses on rare diseases, also stresses the importance of strong scientific peer review matched by clear marketing and communications to present credible projects to a broad audience in an appealing way.

Essand agrees. “I don’t think any scientist can just set up a web page and expect to raise a lot of money. You need media coverage,” he says, pointing out that donations dropped off once the initial press reports faded away.

For Hamilton, progress was too slow. He died in March 2014. But he had time to create a foundation to fund neuroendocrine cancer research. And his legacy lives on. Sweden’s medicines regulators approved a clinical trial for the AdVince virus in January and it is due to be tested in the first patient later this month.