4 July 2017

How we disrupted the world of medical funding

By Alexander Masters

Every year dozens, perhaps hundreds, of promising treatments for terminal diseases such as cancer are thrown out without ever being tested in humans. No one knows the exact figure. I first found out about this murderous level of waste in medical research six years ago, when my closest friend and co-author, Dr Dido Davies, was dying of neuroendocrine cancer of the pancreas (the same disease that killed Steve Jobs).

After a little internet research, I discovered two potential treatments for her disease that had shown “astounding” effects against tumours in test tubes and mice. These were not quack products. They were potential medications that have shown dramatic benefits in laboratory studies at leading research centres.

I rang up the professor who had developed one of the neglected drugs that might help Dido. He ran a research group at the University of Uppsala, Sweden – a centre of excellence for this type of cancer. “How much money do you need?” I asked.

He was quiet with calculations for a moment. “About £2,000,000.”

What shocked me was not how much money he wanted, but how little. A drug that might help lessen suffering and prolong life not just for Dido, but for the 30 other people who would take part in the trials, and the subsequent thousands of others if those trials were successful – and all that was holding the process up was the price a Patek Phillipe 1591 wrist watch?

“If I get the money for you, will you promise to put my friend Dido on the trial?”

“Yes,” agreed Professor Essand, after a moment’s consideration. “Provided she is still a suitable candidate.”

It took me eight months. Together with a journalist and publicist, Dominic Nutt, and a social media campaigner, Liz Scarff of Fieldcraft Studios, we set up the campaign group iCancer to raise the money. Though we didn’t know it at the time, what we did next was radically disruptive in the world of medical funding.

It was a tactic that had never been tried before; it was certainly not discussed in any of the respectable literature. We thought it was probably illegal and almost certainly unethical. Yet it’s an idea that should appeal to Jeremy Corybn and Bernie Sanders as well as Theresa May and Donald Trump.

We started to hunt for somebody very rich who had the same disease as Dido, and to try to get that person to pay the outstanding amount in return for the same Dido-style deal – the promise of a place on the trial. We found our candidate quickly, Vince Hamilton, an oilman from Arizona. He read about our campaign while sitting in a café in Geneva, and rang up Uppsala the same afternoon.

It turns out that it is perfectly legal for a rich person effectively to “buy” a place on a trial in return for funding it. Ethically, there’s nothing wrong with the idea either. No one had tried it (or at least admitted as much) before we stumbled on the suggestions in our desperation to get a new drug quickly for Dido; yet it works stunningly well.

I call it the Plutocratic Proposal. The central premise is beautifully simple: any patient who rescues a potential therapeutic agent from neglect by funding early stage clinical should be offered a place on the trial. Such human trials typically involve between 10 and 30 people. The rich patient is therefore paying the equivalent of a little over three nights at the Penthouse Suite in the Hotel President Wilson, Geneva (admittedly, the most expensive hotel in the world) for all these other, poorer patients to test the new drug too – people who would otherwise have no chance of taking part in the tests.

It’s a way to get the many paid for by the privileged few; it uses private capital to supplement overstretched public funds. It is a perfect synergy between free-market choice and social enterprise.

Traditional funding for medical research tends to be either profit-driven (eg. venture capitalism) or altruistic (charities and governments). The Plutocratic Proposal offers a new route, which we called “committed philanthropy”. At a time when more and more cuts are being made to medical research, the Plutocratic Proposal is an idea that desperately needs to be investigated and debated.

The Journal of Medical Ethics – the world’s number one journal in its field – agrees. It has made our Plutocratic Proposal the lead subject of its latest issue.

There are still details to sort out. We need to build a database of neglected potential medications – several sources of such information already exist, but they are limited and as underfunded as the drugs themselves. The process of the Plutocratic Proposal will also have to be overseen by an independent body that will ensure the quality of the drugs being tested and that the contract between the researchers and the donor is both honourable and honoured. But it’s easy to imagine how that can be done.

It is also easy to see that, once started, the new funding mechanism can be self-financing by charging the plutocratic patient a few extra per cent in running costs. “Do you want to make money from this?” asked a wary medical trials lawyer I consulted. “No,” I replied. “I’m no businessman. I can barely manage my own taxes. Besides, to ensure it is a trustworthy process it must be not-for-profit.” He nodded slowly. “You could become very rich, if you wanted to try,” he goaded.

I don’t want to try. But I do want the Plutocratic Proposal to be given a chance to live, just as the Uppsala drug has been given a chance to prove itself.

The difficulty is to get a new idea moving in a hidebound field. That’s why the publication of our lead paper was so important: it launched a wild amateur dream of a couple of journalists trying to raise money for a friend, into the world of serious medical consideration.

What we need now are entrepreneurs and risk-takers to fund the transition of this idea into reality. If anyone has a spare Patek Phillipe 1591 they’d like to cash in on the off chance that it might begin the rescue of hundreds of discarded potential treatments for the world’s terrible diseases, let us know.

The Uppsala drug is in clinical trials now. We are not allowed to say how well it is doing. The most we can divulge is that the results in humans are “promising”. But it comes too late for Dido and Vince. They both died before the potential new treatment could begin these human tests. We hope the new funding mechanism will come in time for thousands of others.

For more information contact Alexander Masters or Dominic Nutt

Alexander Masters is a journalist and author