We all agree that giving money to medical research is a good deed. We’re not bothered by the idea that people give money to support research into fighting a particular disease because either the donor had the disease or was close to people who had the disease.
But let’s take this one step further. Suppose you’re a rich donor who suffers from a rare form of cancer. You hear about a clinical trial that offers a new drug that offers a promising treatment for the cancer. You offer to make a $2 million donation to foster development of the drug—in return for your getting a guaranteed dose of the drug. Is this, ethically, a good idea?
This is the challenge Alexander Masters discusses in an article in Mosaic. This journal is produced by the Wellcome Trust, which I gather is a large British nonprofit comparable in size to one of America’s ten largest foundations. But Masters’s analysis didn’t seem hampered by any sort of ideological blinders. It seems like the best sort of reporting: that which plays out the implications of a new idea.
“In 2007,” Masters writes, “my best friend in the world, Dido Davies, was diagnosed with neuroendocrine cancer of the pancreas—the same disease that killed Steve Jobs.” Surgery, chemotherapy, and radiotherapy are unattractive options with horrific side effects. So he decided to find a clinical trial with a promising new drug and see if they would admit his friend. He found that at Sweden’s Uppsala University there was a promising new drug that could work, but the university needed £2 million before a trial could begin.
“My idea was this,” Masters writes, “there are over 100,000 people in the world worth over £20 million. According to medical statistics, between three and five people in every 100,000 get neuroendocrine cancer every year. So, three to five supremely wealthy people will have neuroendocrine cancer.” If he found one, he could have his trial.
Masters wrote an article for the Daily Telegraph in 2012, and launched a crowdfunding campaign through Indiegogo. The biggest prize was a simple one: if you donated £1 million, Uppsala University promised to name the new drug after you. This gimmick attracted the attention of the Financial Times, which wrote a piece about it. Arizona oilman Vince Hamilton, who suffered from neuroendocrine cancer, read the article, and agreed to donate £2 million to start a clinical trial but also agreed to contribute $20 million to see if the cost of producing new neuroendocrine drugs could come down. Uppsala University agreed to start the trial and guarantee spots for Vince Hamilton and Dido Davies once the trial began in a year. Unfortunately, Dido Davies died the day after Uppsala University’s announcement.
Masters asks: why can’t this process be formalized? His idea is to set up a nonprofit (which he calls “the Dating Agency”) that would be on the lookout for important new clinical trials for drugs that could fight cancer. Donors could give money and guarantee their spot or spots in the trials. But a certain number of places would be guaranteed for people who had the disease who couldn’t afford to pay.
The remainder of Masters’s long article consists of eminences that come up with reasons why his idea couldn’t possibly work. Dan O’Connor, head of humanities and social sciences at the Wellcome Trust, made this point: Most medical trials are randomized, with some getting the drug and some getting a placebo. If the donor was guaranteed the drug, wouldn’t that screw up the trial?
Masters’s first response is to say that the Dating Agency would fund the parts of a trial that aren’t randomized, such as when they’re testing how strong the dose of a drug should be in order to be effective.
Most of the rest of the article is about the objections other people raise. For example, suppose the drug is successful. Usually drug companies agree to provide you with a drug used in a clinical trial for two years. So if a donor comes home, finds that the drug has cured his cancer, then he has to fund £10 million to pay the expenses of the other people in the trial whose treatments showed that the drug works. Moreover, if the donor doesn’t get well from the drug and other people in the trial do recover their health, then he’s once again out for the full £10 million.
Then there’s the question of what happens when a donor gives money to a biotech company. Masters interviews Peter Lanciano, who heads a small American drug company. If the donor gives £2 million to a for-profit biotech company, and the donor dies, then, says Lanciano, “I lose my job and might go to jail. If I treat you with an unlicensed drug on a compassionate basis outside the regulatory-approved trial, I’m liable.” Moreover, the drug company could be sued even if the donor signs a statement beforehand absolving the drug company of all problems and agreeing not to posthumously sue.
Ultimately, Masters comes up with a possible way for the “dating agency” to work. It’s a complex scheme that would be hard to boil down to the space of a post. But there are a lot of legal hurdles that need to be overcome, most of which make sense.
It doesn’t appear that anyone has tried the “dating agency” approach to giving other than the Uppsala University case. I’m not sure it would work. But Masters deserves credit for coming up with a new way to fund risky medical research—and one that offers more benefits to a donor than simply getting a plaque on a wall or being honored at a lavish banquet.