A UK author has come up with a novel solution for funding trials that otherwise wouldn’t happen – sell places on the trial for $2 million.
Alexander Masters’ best friend was suffering from pancreatic neuroendocrine cancer – the disease that killed Steve Jobs. There was a promising treatment but despite excellent initial results, further trials were not planned – purely because of the economics of treating such a rare disease.
Mr Masters reasoned that if he could “sell” a place on a trial for enough money to fund the entire trial, it would go ahead and everyone could benefit. Apparently over half of the cancer deaths in the UK are caused by rare forms for which there is no specific cure.
This is one of those issues that will inevitably divide people but there are certain clear ethical concerns about the practice…
1 – No millionaire funder is going to be happy to risk receiving a placebo after paying enough to buy a very large house.
2 – Will these trials be “extra” or will they divert research effort away from diseases that are unlikely to affect the rich? We all know the results of placing a lower priority on a certain disease cutting a swathe through West Africa.
3 – The principles of good clinical practice are designed to protect the participant and ensure the trial produces scientifically valid results. They really aren’t intended for people who are there because they have paid rather than been recruited in a rigorous way. What if they don’t match the profile of the others on the trial?
4 – What happens if the results are not sufficiently positive to develop the treatment further? This could be a particular issue if the funder appeared to respond positively to the treatment.
Despite my initial misgivings, I’m coming round to the idea - as long as there are enough trained personnel to perform the research that would have happened without this funding. A lack of trained researchers is already an issue in some countries, such as Japan but if this can be addressed, maybe the future for those with rare diseases may be a little brighter.
|
|
 |
|
|
Share on LinkedIn |
Share via Email |
