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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Martin McGuinness's long game: why a united Ireland is now increasingly likely

McGuinness died with his ultimate goal of a united Ireland arguably closer to realisation than at any other time since the island’s partition in 1921.

In late 2011 Martin McGuinness stood as Sinn Fein’s candidate in Ireland’s presidential election, raising all sorts of intriguing possibilities.

Raised in a tiny terraced house in the Bogside, Derry, he would have ended up living in a 92-room presidential mansion in Dublin had he won. A former IRA commander, he would have become supreme commander of Ireland’s defence forces. Once banned from Britain under the Prevention of Terrorism Acts, he would have received the credentials of the next British ambassador to Dublin. Were he invited to pay a state visit to London, a man who had spent much of his youth shooting or bombing British soldiers would have found himself inspecting a guard of honour at Buckingham Palace.

McGuinness would certainly have shaken the hands of the English team before the Ireland-England rugby match at the Aviva Stadium in Dublin every other year. “I’d have no problem with that,” he told me, grinning, as he campaigned in the border county of Cavan one day that autumn. Though a staunch republican, he enjoyed the “Protestant” sports of rugby and cricket, just as he supported Manchester United and enjoyed BBC nature programmes and Last of the Summer Wine. He wrote poetry and loved fly-fishing, too. Unlike Gerry Adams, the coldest of cold fish, McGuinness was hard to dislike – provided you overlooked his brutal past.

In the event, McGuinness, weighed down by IRA baggage, came a distant third in that election but his story was astonishing enough in any case. He was the 15-year-old butcher’s assistant who rose to become the IRA chief of staff, responsible for numerous atrocities including Lord Mountbatten’s assassination and the Warrenpoint slaughter of 18 British soldiers in 1979.

Then, in 1981, an IRA prisoner named Bobby Sands won a parliamentary by-election while starving himself to death in the Maze Prison. McGuinness and Adams saw the mileage in pursuing a united Ireland via the ballot box as well as the bullet. Their long and tortuous conversion to democratic politics led to the Good Friday accord of 1998, with McGuinness using his stature and “street cred” to keep the provisional’s hard men on board. He became Northern Ireland’s improbable new education minister, and later served as its deputy first minister for a decade.

His journey from paramilitary pariah to peacemaker was punctuated by any number of astounding tableaux – visits to Downing Street and Chequers; the forging of a relationship with Ian Paisley, his erstwhile arch-enemy, so strong that they were dubbed the “Chuckle Brothers”; his denunciation of dissident republican militants as “traitors to the island of Ireland”; talks at the White House with Presidents Clinton, George W Bush and Obama; and, most remarkable of all, two meetings with the Queen as well as a state banquet at Windsor Castle at which he joined in the toast to the British head of state.

Following his death on 21 March, McGuinness received tributes from London that would have been unthinkable 20 years ago. Tony Blair said peace would not have happened “without Martin’s leadership, courage and quiet insistence that the past should not define the future”. Theresa May praised his “essential and historic contribution to the extraordinary journey of Northern Ireland from conflict to peace”.

What few noted was that McGuinness died with his ultimate goal of a united Ireland arguably closer to realisation – albeit by peaceful methods – than at any other time since the island’s partition in 1921.

The Brexit vote last June has changed political dynamics in Northern Ireland. The province voted by 56 per cent to 44 in favour of remaining in the European Union, and may suffer badly when Britain leaves. It fears the return of a “hard border” with the Republic of Ireland, and could lose £330m in EU subsidies.

Dismay at the Brexit vote helped to boost Sinn Fein’s performance in this month’s Stormont Assembly elections. The party came within 1,200 votes of overtaking the Democratic Unionist Party, which not only campaigned for Leave but used a legal loophole to funnel £425,000 in undeclared funds to the broader UK campaign. For the first time in Northern Ireland’s history, the combined unionist parties no longer have an overall majority. “The notion of a perpetual unionist majority has been demolished,” Gerry Adams declared.

Other factors are also working in Sinn Fein’s favour. The party is refusing to enter a new power-sharing agreement at Stormont unless the DUP agrees to terms more favourable to the Irish nationalists. Sinn Fein will win if the DUP agrees to this, but it will also win if there is no deal – and London further inflames nationalist sentiment by imposing direct rule.

McGuinness’s recent replacement as Sinn Fein’s leader in Northern Ireland by Michelle O’Neill, a personable, socially progressive 40-year-old unsullied by the Troubles, marks another significant step in the party’s move towards respectability. As Patrick Maguire recently wrote in the New Statesman, “the age of the IRA old boys at the top is over”.

More broadly, Scottish independence would make the notion of Northern Ireland leaving the UK seem less radical. The Irish republic’s economic recovery and the decline of the Roman Catholic Church have rendered the idea of Irish unity a little less anathema to moderate unionists. And all the time, the province’s Protestant majority is shrinking: just 48 per cent of the population identified itself as Protestant in the 2011 census and 45 per cent Catholic.

The Good Friday Agreement provides for a referendum if a majority appears to favour Irish unity. Sinn Fein is beginning to agitate for exactly that. When Adams and McGuinness turned from violence to constitutional politics back in the 1980s they opted for the long game. Unfortunately for McGuinness, it proved too long for him to see Irish nationalism victorious, but it is no longer inconceivable that his four grown-up children might. 

This article first appeared in the 23 March 2017 issue of the New Statesman, Trump's permanent revolution