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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The Brexit Beartraps, #2: Could dropping out of the open skies agreement cancel your holiday?

Flying to Europe is about to get a lot more difficult.

So what is it this time, eh? Brexit is going to wipe out every banana planet on the entire planet? Brexit will get the Last Night of the Proms cancelled? Brexit will bring about World War Three?

To be honest, I think we’re pretty well covered already on that last score, but no, this week it’s nothing so terrifying. It’s just that Brexit might get your holiday cancelled.

What are you blithering about now?

Well, only if you want to holiday in Europe, I suppose. If you’re going to Blackpool you’ll be fine. Or Pakistan, according to some people...

You’re making this up.

I’m honestly not, though we can’t entirely rule out the possibility somebody is. Last month Michael O’Leary, the Ryanair boss who attracts headlines the way certain other things attract flies, warned that, “There is a real prospect... that there are going to be no flights between the UK and Europe for a period of weeks, months beyond March 2019... We will be cancelling people’s holidays for summer of 2019.”

He’s just trying to block Brexit, the bloody saboteur.

Well, yes, he’s been quite explicit about that, and says we should just ignore the referendum result. Honestly, he’s so Remainiac he makes me look like Dan Hannan.

But he’s not wrong that there are issues: please fasten your seatbelt, and brace yourself for some turbulence.

Not so long ago, aviation was a very national sort of a business: many of the big airports were owned by nation states, and the airline industry was dominated by the state-backed national flag carriers (British Airways, Air France and so on). Since governments set airline regulations too, that meant those airlines were given all sorts of competitive advantages in their own country, and pretty much everyone faced barriers to entry in others. 

The EU changed all that. Since 1994, the European Single Aviation Market (ESAM) has allowed free movement of people and cargo; established common rules over safety, security, the environment and so on; and ensured fair competition between European airlines. It also means that an AOC – an Air Operator Certificate, the bit of paper an airline needs to fly – from any European country would be enough to operate in all of them. 

Do we really need all these acronyms?

No, alas, we need more of them. There’s also ECAA, the European Common Aviation Area – that’s the area ESAM covers; basically, ESAM is the aviation bit of the single market, and ECAA the aviation bit of the European Economic Area, or EEA. Then there’s ESAA, the European Aviation Safety Agency, which regulates, well, you can probably guess what it regulates to be honest.

All this may sound a bit dry-

It is.

-it is a bit dry, yes. But it’s also the thing that made it much easier to travel around Europe. It made the European aviation industry much more competitive, which is where the whole cheap flights thing came from.

In a speech last December, Andrew Haines, the boss of Britain’s Civil Aviation Authority said that, since 2000, the number of destinations served from UK airports has doubled; since 1993, fares have dropped by a third. Which is brilliant.

Brexit, though, means we’re probably going to have to pull out of these arrangements.

Stop talking Britain down.

Don’t tell me, tell Brexit secretary David Davis. To monitor and enforce all these international agreements, you need an international court system. That’s the European Court of Justice, which ministers have repeatedly made clear that we’re leaving.

So: last March, when Davis was asked by a select committee whether the open skies system would persist, he replied: “One would presume that would not apply to us” – although he promised he’d fight for a successor, which is very reassuring. 

We can always holiday elsewhere. 

Perhaps you can – O’Leary also claimed (I’m still not making this up) that a senior Brexit minister had told him that lost European airline traffic could be made up for through a bilateral agreement with Pakistan. Which seems a bit optimistic to me, but what do I know.

Intercontinental flights are still likely to be more difficult, though. Since 2007, flights between Europe and the US have operated under a separate open skies agreement, and leaving the EU means we’re we’re about to fall out of that, too.  

Surely we’ll just revert to whatever rules there were before.

Apparently not. Airlines for America – a trade body for... well, you can probably guess that, too – has pointed out that, if we do, there are no historic rules to fall back on: there’s no aviation equivalent of the WTO.

The claim that flights are going to just stop is definitely a worst case scenario: in practice, we can probably negotiate a bunch of new agreements. But we’re already negotiating a lot of other things, and we’re on a deadline, so we’re tight for time.

In fact, we’re really tight for time. Airlines for America has also argued that – because so many tickets are sold a year or more in advance – airlines really need a new deal in place by March 2018, if they’re to have faith they can keep flying. So it’s asking for aviation to be prioritised in negotiations.

The only problem is, we can’t negotiate anything else until the EU decides we’ve made enough progress on the divorce bill and the rights of EU nationals. And the clock’s ticking.

This is just remoaning. Brexit will set us free.

A little bit, maybe. CAA’s Haines has also said he believes “talk of significant retrenchment is very much over-stated, and Brexit offers potential opportunities in other areas”. Falling out of Europe means falling out of European ownership rules, so itcould bring foreign capital into the UK aviation industry (assuming anyone still wants to invest, of course). It would also mean more flexibility on “slot rules”, by which airports have to hand out landing times, and which are I gather a source of some contention at the moment.

But Haines also pointed out that the UK has been one of the most influential contributors to European aviation regulations: leaving the European system will mean we lose that influence. And let’s not forget that it was European law that gave passengers the right to redress when things go wrong: if you’ve ever had a refund after long delays, you’ve got the EU to thank.

So: the planes may not stop flying. But the UK will have less influence over the future of aviation; passengers might have fewer consumer rights; and while it’s not clear that Brexit will mean vastly fewer flights, it’s hard to see how it will mean more, so between that and the slide in sterling, prices are likely to rise, too.

It’s not that Brexit is inevitably going to mean disaster. It’s just that it’ll take a lot of effort for very little obvious reward. Which is becoming something of a theme.

Still, we’ll be free of those bureaucrats at the ECJ, won’t be?

This’ll be a great comfort when we’re all holidaying in Grimsby.

Jonn Elledge edits the New Statesman's sister site CityMetric, and writes for the NS about subjects including politics, history and Brexit. You can find him on Twitter or Facebook.