Can we crowdfund clinical research?

Kickstarter for drug trials.

Kickstarter's high-profile launch in the UK last month marks yet another step towards ubiquity for a thoroughly 21st century funding model. Driven by the simplicity of making online payments, crowdfunding sidesteps the limitations of traditional investment channels, instead harnessing the collective power of thousands of small-scale donations from the general public.

Kickstarter might have played host to more than $400 million in crowdfunded pledges since its launch in 2009, but one glance at the site's top ten funded projects – video games, fancy consumer tech, more video games – gives an indication of the relatively narrow scope of the crowdfunding model. Crowdfunding's main niche remains funding creative projects like albums, films and games, where the passion of fans can prompt huge surges in mass donation to bankroll new projects. But as this grass-roots funding method gains traction, new possibilities are beginning to open up.

Take drug development funding. In an era of shrinking government budgets and major funding cuts, could crowdfunding unlock a new source of financial support for the next generation of treatments and cures? Kickstarter excludes health and medical technologies from its fundable projects, but other companies are starting to catch on. MedStartr, a new crowdfunding platform launched this summer, got the ball rolling with a site dedicated to crowdfunding healthcare-related projects like physician videoconferencing, cancer support programmes and therapeutic exercise equipment. But another start-up has taken the concept a step further.

CureLauncher is a recently-launched website dedicated to crowdfunding early-stage clinical development as well as connecting patients and their families to the cutting edge of medical research. The site aims to provide alternative funding for important research projects and clinical trials in the US through large numbers of small contributions, which could be used as primary funding or as bridge funding so projects can continue to develop their science while they wait for federal grants. Like Kickstarter, CureLauncher takes a small percentage of each pledge to make its profit.

The website only launched in October, so doesn't yet have any major success stories to pin on its wall. Nevertheless, if the idea takes off, the potential advantages for US researchers are startling. With the US National Institutes of Health (NIH) facing $2.5 billion in budgets cuts for 2013, CureLauncher offers a platform to galvanise the people affected by chronic diseases and help make up this massive shortfall. 91 per cent of donations go directly to the research projects, and scientists only have to wait 30-45 days for their funds, as opposed to the two years it often takes for NIH funding to materialise. The site only works with heavily scrutinised NIH-level research, which might allay some fears about democratising a traditionally cautious and bureaucratic funding process.

But for CureLauncher's crowdfunding model to thrive in the long-term, it needs to create mass awareness of its sponsored projects, and connect to a large community of funders. That's why its creators, pharma lawyer Steve Goldner and product development expert Dave Fuehrer, have also placed a heavy emphasis on fostering a two-way relationship between researchers and the public. Donors can correspond with the researchers they are donating to, and the site also lists hundreds of enrolling clinical trials – their treatments explained without pharmajargon – so that patients can access early treatment.

It's still early days for CureLauncher, but its founders see the site as a global solution to a global problem, with ambitions to bring struggling research projects outside the US into the fold. It might be too early to tell if the crowdfunding model will work for drug research, but Kickstarter's track record proves that with enough public demand, huge sums of cash can be raised. And if the American public can shell out more than $3 m for a new range of fantasy gaming miniatures, one would hope it can scrape together a few dollars for potentially life-saving medical research.

More can be read here: http://www.pharmaceutical-technology.com/features/featurepeople-power-crowdfunding-clinical-research-funding/

CureLauncher seeks small scale donations. Photograph: Getty Images

 

Chris Lo is a senior technology writer for the NRI Digital network.

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Meet Anne Marie Waters - the Ukip politician too extreme for Nigel Farage

In January 2016, Waters launched Pegida UK with former EDL frontman Steven Yaxley-Lennon (aka Tommy Robinson). 

There are few people in British political life who can be attacked from the left by Nigel Farage. Yet that is where Anne Marie Waters has found herself. And by the end of September she could well be the new leader of Ukip, a party almost synonymous with its beer-swilling, chain-smoking former leader.

Waters’s political journey is a curious one. She started out on the political left, but like Oswald Mosley before her, has since veered dramatically to the right. That, however, is where the similarities end. Waters is Irish, agnostic, a lesbian and a self-proclaimed feminist.

But it is her politics – rather than who she is – that have caused a stir among Ukip’s old guard. Former leader Paul Nuttall has said that her views make him “uncomfortable” while Farage has claimed Ukip is “finished” if, under her leadership, it becomes an anti-Islam party.

In her rhetoric, Waters echoes groups such as the English Defence League (EDL) and Britain First. She has called Islam “evil” and her leadership manifesto claims that the religion has turned Britain into a “fearful and censorious society”. Waters wants the banning of the burqa, the closure of all sharia councils and a temporary freeze on all immigration.

She started life in Dublin before moving to Germany in her teens to work as an au pair. Waters also lived in the Netherlands before returning to Britain to study journalism at Nottingham Trent University, graduating in 2003. She subsequently gained a second degree in law. It was then, she says, that she first learnt about Islam, which she claims treats women “like absolute dirt”. Now 39, Waters is a full-time campaigner who lives in Essex with her two dogs and her partner who is an accountant.

Waters’s first spell of serious activism was with the campaign group One Law for All, a secularist organisation fronted by the Iranian feminist and human rights activist Maryam Namazie. Waters resigned in November 2013 after four years with the organisation. According to Namazie, Waters left due to political disagreements over whether the group should collaborate with members of far-right groups.

In April 2014, Waters founded Sharia Watch UK and, in January 2016, she launched Pegida UK with former EDL frontman Steven Yaxley-Lennon (aka Tommy Robinson). The group was established as a British chapter of the German-based organisation and was set up to counter what it called the “Islamisation of our countries”. By the summer of 2016, it had petered out.

Waters twice stood unsuccessfully to become a Labour parliamentary candidate. Today, she says she could not back Labour due to its “betrayal of women” and “betrayal of the country” over Islam. After joining Ukip in 2014, she first ran for political office in the Lambeth council election, where she finished in ninth place. At the 2015 general election, Waters stood as the party’s candidate in Lewisham East, finishing third with 9.1 per cent of the vote. She was chosen to stand again in the 2016 London Assembly elections but was deselected after her role in Pegida UK became public. Waters was also prevented from standing in Lewisham East at the 2017 general election after Ukip’s then-leader Nuttall publicly intervened.

The current favourite of the 11 candidates standing to succeed Nuttall is deputy leader Peter Whittle, with Waters in second. Some had hoped the party’s top brass would ban her from standing but last week its national executive approved her campaign.

Due to an expected low turnout, the leadership contest is unpredictable. Last November, Nuttall was elected with just 9,622 votes. More than 1,000 new members reportedly joined Ukip in a two-week period earlier this year, prompting fears of far-right entryism.

Mike Hookem MEP has resigned as Ukip’s deputy whip over Waters’ candidacy, saying he would not “turn a blind eye” to extremism. By contrast, chief whip, MEP Stuart Agnew, is a supporter and has likened her to Joan of Arc. Waters is also working closely on her campaign with Jack Buckby, a former BNP activist and one of the few candidates to run against Labour in the by-election for Jo Cox’s former seat of Batley and Spen. Robinson is another backer.

Peculiarly for someone running to be the leader of a party, Waters does not appear to relish public attention. “I’m not a limelight person,” she recently told the Times. “I don’t like being phoned all the time.”

The journalist Jamie Bartlett, who was invited to the initial launch of Pegida UK in Luton in 2015, said of Waters: “She failed to remember the date of the demo. Her head lolled, her words were slurred, and she appeared to almost fall asleep while Tommy [Robinson] was speaking. After 10 minutes it all ground to an uneasy halt.”

In an age when authenticity is everything, it would be a mistake to underestimate yet another unconventional politician. But perhaps British Muslims shouldn’t panic about Anne Marie Waters just yet.

James Bloodworth is editor of Left Foot Forward

This article first appeared in the 17 August 2017 issue of the New Statesman, Trump goes nuclear