In 2007, Alexander Masters watched his best friend die of neuroendocrine cancer of the pancreas–the same disease that killed Steve Jobs–and wondered what he could do. Chemotherapy wasn’t helping, so he started looking around for alternatives. Masters came across a promising treatment that had been developed at a Swedish university. But, to his frustration, he learned it had been shelved for lack of funding.
That was when Masters, normally an historian and illustrator, came up with an idea–a way to fund some of the dozens of drugs that fall by the wayside every year. In short, he would ask the wealthy to make up the finance gap in return for access to the drug should it prove effective. Masters managed to raise more than $3 million for the Swedish research to go ahead, mostly from an Arizona oilman who also had neuroendocrine cancer.
In a recent story in Mosaic magazine, Masters explains that “there’s not much interest in rare cancers” among drug developers, because the risks are great and the returns are small. Even for scientists, “after the initial lab excitement of discovery has worn off, there’s little opportunity for glory left.” Clinical trials are time-consuming and monotonous.
Millionaires and billionaires, though, have an obvious interest in helping along such research. “There are over 12 million millionaires in the world–any one of these would want to buy a place on a trial if it might purchase relief or stave off death,” Masters writes. “Every one of them has people they love for whom they’d pay good money to get an extra chance. Why not set up a charitable or private body that would arrange these ‘sales’?”
The idea raises a lot of thorny questions, which Masters explores in detail in the piece. Is it moral for plutocrats to buy their way into clinical trials, even if poorer people could benefit? Should the rich be allowed to dictate the progress of scientific research even if they’re paying for it? What happens to the intellectual property if the trials are successful and the drug becomes valuable?
The story is fascinating not only because it presents a model to fund unfunded research, but also because it throws up lots of moral quandaries. Masters manages to square most of them, showing how the idea could be ethical, legal and even financially viable–but not all.
Here is how he describes the current state of play:
The general version of my proposal has now received backing from a select group of university research departments and a clutch of experts on medical ethics, and has the interest of one of the world’s largest law firms specializing in the life sciences. If the scheme can be made to work on a larger scale, it will open up the possibility of millions (I think, billions) of pounds [Masters is British] of extra money for clinical trials, especially for rare and difficult-to-treat diseases–the ones that traditional funders are reluctant to support.
The sad part of the story is that Masters’s friend died early in the process (the oilman followed soon after). But if he continues to gain support, he could leave an inspiring legacy for her. That would be something.