A philanthropic approach

Neuroendocrine cancer is relatively rare, in comparison to the “big four” cancers: breast, bowel, lung and prostate. There is thus less research into new treatments for rare diseases, including NETs. Finding patients for clinical trials is difficult because they are few and far between. Raising funds for research is harder because donors often prefer to support major diseases where a cure or treatment will have a wider impact on more people. And with potential profits being limited due to a smaller market for the drugs, pharmaceutical companies are generally not interested in investing in this type of research.

Yet, all these factors did not discourage VictoryNet partners Alexander Masters and Dominic Nutt. They came up with a way to fund more clinical trials for rare diseases like NETs: the Plutocratic Proposal. In recent years, Alexander and Dominic. have demonstrated that many scientifically sound trials and initiatives that could benefit NET patients never get off the ground or are abandoned for lack of funding.

In collaboration with Uppsala and Oxford universities and funded by VictoryNet, they have shown that it is practically and ethically possible to conduct clinical trials on NETs, funded by wealthy donors who, in return, are guaranteed a place on the trial. The trial, which would not be funded otherwise, is then opened up to non-paying patients. This is a way to find new money for research on rare diseases, rather than trying to divert funds already allocated to other medical trials.

Read Alexander Masters and Dominic Nutt’s paper on the Plutocratic Proposal here in the British Medical Journal.