Researchers turn to crowdfunding to develop Alzheimer's drug
Tests on a drug with the potential to stop Alzheimer’s in its tracks are being funded by raffles, pensioners’ donations and a sponsored walk – because the research team cannot find money for pre-clinical safety tests any other way.
The team of researchers led by Dr David Allsop at Lancaster University’s division of biomedicine and life sciences is running a crowdfunding campaign, Defying Dementia, to carry out the necessary preparatory testing on their drug in the belief they may be looking at a cure for the progressive brain disease. So far they have raised £52,000 towards their target of £165,000.
The global financial crisis has blocked access to credit and funding for basic and clinical research, leading some health researchers – particularly in the US – to turn to crowdfunding. American crowdfunding sites such as Experiment display an array of competing projects, from finding the cause of sarcomas in children and dogs (103% of the way to its target) to examining sweetener safety (3%).
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Many crowdfunding websites are cautious about revealing exactly how much money has been raised for science, but SciFund Challenge has allowed nearly 200 researchers to raise an average of $2,000 (£1,272) for 159 different projects. In the UK, crowdfunding is common in the arts and community project fields, but not in basic medical research.
Defying Dementia is different because it is run by a university department to fund basic medical research. Allsop’s team chose to break the mould after working for more than eight years on the drug R1-OR2-TAT, which they think could change the Alzheimer’s landscape, only to find they could not fund its preparation for phase one trials, even though a clinical research company in the north-west of England, MAC, has licensed the patent and the Alzheimer’s Society has awarded the team £150,000.
Crowdfunding donations – some as small as £5 – are enabling Defying Dementia to carry out smaller tests piecemeal, which Allsop says is enough to keep research advancing until more lucrative sources emerge. He says: “We are really excited because we think that we are on to something that stands a chance of working, but without crowdfunding we would have been stumped.”
It seems like a drop in the ocean in the face of 850,000 people with dementia in the UK – of which Alzheimer’s is the most common form – and numbers set to rise to more than 1 million by 2025, without a cure in sight.
Part of the problem for Defying Dementia is that R1-OR2-TAT represents a new approach. It works on a substance called beta-amyloid, found in the brains of people with Alzheimer’s, prevents beta-amyloid from clumping, and blocks its toxic effect on nerve cells. Other pharmaceutical attempts to produce drugs for dementia have, so far unsuccessfully, tackled other aspects of the disease.
A recent editorial in the Journal of Alzheimer’s Disease talked about the difficulty of gaining funding for novel approaches. One of the authors, Prof Richard Lathe from Edinburgh University, says: “The obstacle to progress – and to funding – is that outdated theories are held tenaciously by the protagonists, and they decry any alternatives.”
Crowdfunding comes into its own by raising awareness. Events such as Defying Dementia’s bluebell walk on 14 May might only raise £2,000, but they spread the word about the threat posed by dementia.
This awareness-raising aspect has been used to good effect by Nick Sireau, whose two sons were born with the rare genetic disease alkaptonuria. He has raised huge sums of money to work with patient groups, clinicians and industry in search of a cure for rare diseases.
Prof David Nutt, a neuropsychopharmacologist at Imperial College London – who was controversially sacked from the UK government’s Advisory Council on the Misuse of Drugs over his views on ecstasy and LSD – launched a bid to raise funding for research into the effects of LSD on the brain through British-based crowdfunding site Walacea.
The head of translational research for the Medical Research Council, Dr Chris Watkins, acknowledges the funding problems facing medical innovation and believes that crowdfunding may have a place – perhaps in increasing the number of people prepared to volunteer for clinical trials – as long as the ideas requesting funding have undergone robust independent scrutiny.
He says: “To approach the public directly and to say ‘please fund this’ without questioning whether the individuals have enough knowledge to decide whether it is a good study is unethical.”
But Watkins also has a number of reservations about what influences public decisions to back a cause – often based on personal experience, and with a bias towards children and animals. He worries, too, that crowdfunding may be misused by researchers who have failed to gain financial backing on quality grounds. The answer, he believes, is to go to major charities such as the British Heart Foundation, which themselves carry out crowdfunding, but with the quality assurance of being members of the Association of Research Charities.
“There is never enough money to spend on good research,” he says. “But it’s not just a case of throwing money at it. Sometimes we do not yet have the tools to answer the questions and medical research takes a long time.”