Can we fund clinical trials with the crowd?

Funding Health: Last year, several crowd-funding campaigns successfully raised money for first Phase I clinical trials. Image credit: Unknown.

Funding Health: Last year, several crowd-funding campaigns successfully raised money for first Phase I clinical trials. Image credit: Unknown.

Crowd-funding has progressed from a novelty a few years ago, to a genuine way to launch your product today. Recently, it has even been used to fund medical research and clinical trials, once considered the preserve of Big Pharma. 

What is wrong with the status quo?

Developing a drug is a mind-bogglingly expensive endeavour, justified only by the huge profits that can be turned if it is developed successfully. Recent estimates put the overall cost of drug development at more than US$4 billion, per drug, over a period of about 10 years.The majority of the expense comes from clinical trials – three of them, for every drug, and each increasing in size and complexity. (In case you would like to know, Phase I tests for bad reactions to the drug on 10’s of patients, Phase II tests whether it actually works as suggested on several hundred patients, and Phase III tests for side-affects on thousands of people.) The cost has ballooned due to increased regulatory requirements and concerns about side effects, to the point where only the largest pharmaceutical companies – and to a lesser extent, charitable foundations – can even afford to make these drugs any more. These trials require deep pockets and plenty of know-how.

The net result of this is two-fold. Firstly, Big Pharma has all the say when it comes to which drugs are developed. This is not a new problem – ask any medical scientist in Africa about orphan diseases. There are literally thousands of people in Africa and Asia that die every year from diseases that could be vaccinated against, IF the potential cures could get through the clinical trial stage. Unfortunately, no market for the drug (beyond sales to governments and aid organisations) means the drug doesn’t get developed. Bottom line, and all that. The second, interconnected result is that drugs and treatments with real potential to save lives sit in freezers in laboratories all over the world, because no company or foundation will foot the bill.

The rise of medical crowdfunding

2013 – enter a new player. Despite this incredibly high barrier to entry, several clinical trials have been funded partially or entirely by crowdfunding in the last year. The first was MEandYou, a campaign to study the effects of rituximab on chronic fatigue syndrome/monoencephalitis (ME)/yuppie flu in Norway. Run voluntarily by an ME patient, the campaign gathered remarkable momentum, and in 90 days raised nearly US$500 000. An interesting outcome of the MEandYou campaign is that after the surge of local and international public interest,  the Norwegian Medical Research Council changed heart and issued a large grant to the research group to start clinical trials. The second success story is iCancer, which raised about US$200 000 for the first phase of clinical trials of a promising anticancer treatment. Not quite the US$ 2 million they were looking for, but again, the crowdfunding approach drew in the ‘big fish’ private and public funders. A campaign for stem cell treatment of multiple sclerosis (also a Phase I clinical trial) is close to its funding goal of US$300 000 on Indiegogo. Lastly, the Immunity Project  is raising funds for an HIV vaccine – the more-than US$400 000 raised so far has been put towards the last experiment required before clinical trials can commence. The project continues to raise money, although the official fundraising window is closed.

Funding for your pet project

On the back of these successes has come a rash of scientific or medical crowd-funding platforms – Experiment, Petridish, Geekfunder, CureLauncher, and Medstartr. I think that of all of these, CureLauncher will probably be the most successful. They market themselves as a patient care website – their stated aim is to connect patients to treatment options (read clinical trials) that wouldn’t usually be available to them. So rather than crowd-funding, these guys are crowd-sourcing patients for relevant trials. The others seem to use the standard Kickstarter approach – “here’s a catchy video and some exciting perks, please give me money!” While I can see this working for small ‘pet projects’ and kitchen scientists, it seems unlikely that large projects (such as clinical trials) will get funded regularly on these platforms.

Trading on empathy

My impression is that the success of clinical trial crowd-funding campaigns in 2013 has relied largely on novelty and public empathy – the MEandYou campaign, for instance, received a lot of funding from ME patients around the world. The iCancer campaign made a big deal of the fact that they were trying to treat the type of cancer that killed Steve Jobs. And I don’t need to spell out how the idea of a free HIV vaccine can tug at the heartstrings (and purse strings, for that matter). Another point that needs to be made here is that these are all, apart from HIV, non-communicable diseases. Which translates to cures for the developed world, and not much for the developing world (see ‘orphan diseases’, above. Starting to sound all to familiar,eh?). I don’t really see this changing unless a more nuanced micro-investment model can be developed that rewards investors with a share of drug profits, as suggested here (there is also a startup trying to do this, called HealthFundr). So, for the foreseeable future, I think that crowd-sourced clinical trials remain limited to standalone campaigns tailored to the empathy of the public, and which address diseases of the wealthy.

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