The richest patients can save us – by paying to save themselves
Vince Hamilton and Dido Davies were as different as you could imagine. one was an international businessman and multi-millionaire oilbaron from arizona; the other was a brilliant biographer, editor and expert on the lost bones of St thomas more.
She was my best friend and occasional co-author: a woman i looked up to and loved.
Vince and Dido never met, but they have two things in common. they both died of the same rare disease, and they may — just may — have changed the world of medical research for the better.
in 2007, Dido developed neuro-endocrine cancer of the pancreas, the same type that killed Steve Jobs, co-founder of apple computers. it’s a rare, comparatively slow-growing disease. two years later it spread to her liver.
Surgery, chemotherapy and radioactive proteins pumped into her blood all failed. meanwhile, i hunted the internet in an attempt to find something that might prolong her life.
i’m not a research scientist; i don’t know a thing about cancer. i write biographies. But by astonishing luck i stumbled across a Youtube lecture about canadian pigs.
Veterinary scientists had discovered that these porkers were naturally infected by a previously unknown virus. it did nothing to the pigs, but what it did in the lab was barely believable: it eliminated neuroendocrine cancer.
Yet the lecturer forgot to mention who was developing the new treatment, so i freeze-framed the video and took a screenshot of a poster behind the lectern. that led me to a company called neotropix, which had gone bust.
its defunct website linked, via a company in San Francisco, to a PhD thesis by a Polish immunologist living in Sweden, whose footnotes gave a Skype address, which i rang. the man who answered was Professor magnus essand at Uppsala University, one of the world’s experts on using viruses to treat cancer.
He had no involvement with the canadian pigs, but he had a different drug, half forgotten, in his freezer. it also eliminated neuroendocrine cancer with remarkable success — at least in the lab.
Yet this admirable microbe was not being tested on humans because he couldn’t raise the £2 million needed to begin the experiments.
‘if i get you the money, would you promise to put Dido on the trial?’ i asked. i thought the suggestion was probably illegal. it definitely sounded unethical. to my amazement, Professor essand said yes.
i did get the money — with the help of 3,846 other people around the world. With Dominic nutt, a publicist who’d worked for refugee charities, we started a campaign group called icancer ( icancer.org.uk).
Dom’s been kidnapped, shot at and bombed in afghanistan and Sri lanka, but knows no more about medicine than i do, so he brought in liz Scarff, who runs a social media company. liz broke internet records for the amount she raised through crowdfunding — around £700,000.
MeanWHile Dom and i concentrated on tracking down somebody very rich with the same disease as Dido, to persuade that person to pay the remaining £1.3 million.
We found our candidate quickly: Vince, the oil baron. He read about our campaign and rang Uppsala looking for another Dido-style deal.
He and Dido both died in 2013, before Professor essand’s lab even had time to complete the paperwork for the trial.
But i couldn’t get rid of a niggling idea that Dido and Vince had inspired. if it wasn’t unethical or illegal to offer a trial place to the person who’d funded it (assuming they were a suitable trial candidate), then why couldn’t this tactic be used to raise money for other promising, yet neglected, medical research?
the process would have to be carefully policed to ensure fair play and good quality science, but otherwise it was a beautifully simple idea that might bring in tens of millions of pounds of new money for underfunded research, and which had, astoundingly, never been tried
before. The Plutocratic Proposal, as we’ve called it, is a way to get the many paid for by the privileged few; it uses private capital to supplement overstretched public funds.
One problem with the current system is few major funders or venture capitalists want to get involved in rare cancers. such trials are difficult to organise with so few patients, and treatment might benefit only one or two in 100,000. but these tiny figures soon add up: 53 per cent of all cancer deaths are caused by ‘rare’ forms of the disease.
but are there enough sufficiently rich people in the world to make our idea succeed? Easily, Dom and I think. When I flew out to meet Vince before he died, he was amazed all plutocratic patients didn’t set up similar schemes.
‘but most new drugs don’t work,’ I pointed out, keen to ensure that Vince knew what he was letting himself in for. ‘You’re going to pay the bulk of £2 million for an experimen- tal drug that all the other participants on the trial will be getting for free,’ I added.
‘I have the money, they don’t,’ he said. ‘If I don’t fund the trial, it won’t happen at all.’
Nobody knows how much possible medication is lying around in freezers; everyone agrees it is a substantial amount. Dom and I have found three other neglected treatments for neuroendocrine cancer (including the Canadian pig virus) — all possible life savers, at various stages of clinical neglect.
Drug developers call the chasm between the large number of promising drugs that begin tests in humans and the few that get past those early experiments, the ‘Valley of Death’. sometimes a brilliant idea turns to dust because it’s useless or gives people massive internal organ failure. but most of the time it’s down to the researchers running out of money or willpower.
In the bitter world of medical funding, the Plutocratic Proposal is sweet.
at the moment, drugs are funded either by people wanting to make money or by governments and charities providing cash for free — profit or altruism.
The Plutocratic Proposal suggests a third tactic — barter: use a person’s natural desire to feel well to motivate them to fund innovative research.
We know it can work, because we’ve done it. The trial at uppsala began last year; the first patient was a firefighter.
Together, our unlikely group of ousiders has come up with something fresh that might advance medical research. but will scientists like it? Do you? We want to know what readers, patients and their friends and families think. so Dom and I have written an article about the subject, to be published online in the journal of Medical Ethics this week: ‘a Plutocratic Proposal, an ethical way for rich patients to pay for a place on a trial.’
Vince’s widow has paid to ensure it is not behind the journal’s usual paywall — so that anyone can read about what her husband, and my best friend Dido, inspired.