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 the hot, funny, carefree Cool Mums – the maternal version of the Cool Girl

As new film Bad Moms reveals, what the cool girl is to the diet-obsessed prom queen, the cool mum is to the PTA harpy.

I suppose we should all be thankful. Time was when “mum’s night off” came in the form of a KFC value bucket. Now, with the advent of films such as Bad Moms – “from the gratefully married writers of The Hangover” – it looks as though mums are finally getting permission to cut loose and party hard.

This revelation could not come a moment too soon. Fellow mums, you know all those stupid rules we’ve been following? The ones where we think “god, I must do this, or it will ruin my precious child’s life”? Turns out we can say “sod it” and get pissed instead. Jon Lucas and Scott Moore said so.

I saw the trailer for Bad Moms in the cinema with my sons, waiting for Ghostbusters to start. Much as I appreciate a female-led comedy, particularly one that suggests there is virtue in shirking one’s maternal responsibilities, I have to say there was something about it that instantly made me uneasy. It seems the media is still set on making the Mommy Wars happen, pitching what one male reviewer describes as “the condescending harpies that run the PTA” against the nice, sexy mummies who just want to have fun (while also happening to look like Mila Kunis). It’s a set up we’ve seen before and will no doubt see again, and while I’m happy some attention is being paid to the pressures modern mothers are under, I sense that another is being created: the pressure to be a cool mum.

When I say “cool mum” I’m thinking of a maternal version of the cool girl, so brilliantly described in Gillian Flynn’s Gone Girl:

“Being the Cool Girl means I am a hot, brilliant, funny woman who adores football, poker, dirty jokes, and burping, who plays video games, drinks cheap beer, loves threesomes and anal sex, and jams hot dogs and hamburgers into her mouth like she’s hosting the world’s biggest culinary gang bang while somehow maintaining a size 2, because Cool Girls are above all hot.”

The cool girl isn’t like all the others. She isn’t weighed down by the pressures of femininity. She isn’t bothered about the rules because she knows how stupid they are (or at least, how stupid men think they are). She does what she likes, or at least gives the impression of doing so. No one has to feel guilty around the cool girl. She puts all other women, those uptight little princesses, to shame.

What the cool girl is to the diet-obsessed prom queen, the cool mum is to the PTA harpy. The cool mum doesn’t bore everyone by banging on about organic food, sleeping habits or potty training. Neither hyper-controlling nor obsessively off-grid, she’s managed to combine reproducing with remaining a well-balanced person, with interests extending far beyond CBeebies and vaccination pros and cons. She laughs in the face of those anxious mummies ferrying their kids to and from a multitude of different clubs, in between making  cupcakes for the latest bake sale and sitting on the school board. The cool mum doesn’t give a damn about dirty clothes or additives. After all, isn’t the key to happy children a happy mum? Perfection is for narcissists.

It’s great spending time with the cool mum. She doesn’t make you feel guilty about all the unpaid drudgery about which other mothers complain. She’s not one to indulge in passive aggression, expecting gratitude for all those sacrifices that no one even asked her to make. She’s entertaining and funny. Instead of fretting about getting up in time to do the school run, she’ll stay up all night, drinking you under the table. Unlike the molly-coddled offspring of the helicopter mum or the stressed-out kids of the tiger mother, her children are perfectly content and well behaved, precisely because they’ve learned that the world doesn’t revolve around them. Mummy’s a person, too.

It’s amazing, isn’t it, just how well this works out. Just as the cool girl manages to meet all the standards for patriarchal fuckability without ever getting neurotic about diets, the cool mum raises healthy, happy children without ever appearing to be doing any actual motherwork. Because motherwork, like dieting, is dull. The only reason any woman would bother with either of them is out of some misplaced sense of having to compete with other women. But what women don’t realise – despite the best efforts of men such as the Bad Moms writers to educate us on this score – is that the kind of woman who openly obsesses over her children or her looks isn’t worth emulating. On the contrary, she’s a selfish bitch.

For what could be more selfish than revealing to the world that the performance of femininity doesn’t come for free? That our female bodies are not naturally hairless, odourless, fat-free playgrounds? That the love and devotion we give our children – the very care work that keeps them alive – is not something that just happens regardless of whether or not we’ve had to reimagine our entire selves to meet their needs? No one wants to know about the efforts women make to perform the roles which men have decided come naturally to us. It’s not that we’re not still expected to be perfect partners and mothers. It’s not as though someone else is on hand to pick up the slack if we go on strike. It’s just that we’re also required to pretend that our ideals of physical and maternal perfection are not imposed on us by our position in a social hierarchy. On the contrary, they’re meant to be things we’ve dreamed up amongst ourselves, wilfully, if only because each of us is a hyper-competitive, self-centred mean girl at heart.

Don’t get me wrong. It would be great if the biggest pressures mothers faced really did come from other mothers. Alas, this really isn’t true. Let’s look, for instance, at the situation in the US, where Bad Moms is set. I have to say, if I were living in a place where a woman could be locked up for drinking alcohol while pregnant, where she could be sentenced to decades behind bars for failing to prevent an abusive partner from harming her child, where she could be penalised in a custody case on account of being a working mother – if I were living there, I’d be more than a little paranoid about fucking up, too. It’s all very well to say “give yourself a break, it’s not as though the motherhood police are out to get you”. Actually, you might find that they are, especially if, unlike Kunis’s character in Bad Moms, you happen to be poor and/or a woman of colour.

Even when the stakes are not so high, there is another reason why mothers are stressed that has nothing to do with pressures of our own making. We are not in need of mindfulness, bubble baths nor even booze (although the latter would be gratefully received). We are stressed because we are raising children in a culture which strictly compartmentalises work, home and leisure. When one “infects” the other – when we miss work due to a child’s illness, or have to absent ourselves to express breastmilk at social gatherings, or end up bringing a toddler along to work events – this is seen as a failure on our part. We have taken on too much. Work is work and life is life, and the two should never meet.

No one ever says “the separation between these different spheres – indeed, the whole notion of work/life balance – is an arbitrary construct. It shouldn’t be down to mothers to maintain these boundaries on behalf of everyone else.” Throughout human history different cultures have combined work and childcare. Yet ours has decreed that when women do so they are foolishly trying to “have it all”, ignoring the fact that no one is offering mothers any other way of raising children while maintaining some degree of financial autonomy. These different spheres ought to be bleeding into one another.  If we are genuinely interested in destroying hierarchies by making boundaries more fluid, these are the kind of boundaries we should be looking at. The problem lies not with identities – good mother, bad mother, yummy mummy, MILF – but with the way in which we understand and carry out our day-to-day tasks.

But work is boring. Far easier to think that nice mothers are held back, not by actual exploitation, but by meanie alpha mummies making up arbitrary, pointless rules. And yes, I’d love to be a bad mummy, one who stands up and says no to all that. Wouldn’t we all? I’d be all for smashing the matriarchy, if that were the actual problem here, but it’s not.

It’s not that mummies aren’t allowing each other to get down and party. God knows, we need it. It’s just that it’s a lot less fun when you know the world will still be counting on you to clear up afterwards.  

Glosswitch is a feminist mother of three who works in publishing.