[opensourcepharma] Beyond Heroism And Denial: How To Fortify Our Response To Ebola

[Els Torreele]

There are also various “idea crowdsourcing” initiatives going on, eg:
http://www.usaid.gov/grandchallenges/ebola
http://www.dukesead.org/sead-events/duke-ebola-innovation-challenge

what we’re still missing though is the open source pharma approach in terms of IP/shared ownership…

In terms of clinical research methods and trial protocols, there’s a lot ongoing by those that are getting ready to test some of the experimental drugs and vaccines (MSF, WHO, Wellcome Trust, Oxford University, etc) so it will be important to assess where the needs and gaps are.
FYI, one piece of that ongoing discussion:
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)61734-7/fulltext

Els


From: opensourcepharma [mailto:opensourcepharma-bounces at lists.okfn.org] On Behalf Of Bernard Munos
Sent: Saturday, October 18, 2014 4:31 AM
To: Jaykumar Menon, Prof.
Cc: opensourcepharma at lists.okfn.org
Subject: Re: [opensourcepharma] Beyond Heroism And Denial: How To Fortify Our Response To Ebola

Hi Jay,

Thanks for your comments. The reaction to the blog has actually been puzzling. Of all my Forbes blogs, it is the one that has generated the most fan mail, but also the one with the fewest page views -- currently about 350. A typical blog would have received well over 1000 views by now. I am at a loss to understand what is happening, but it worries me because it raises questions about our ability to raise money through crowdfunding to support a crowdsourced research program. I wonder if it is Ebola fatigue, or the fact that there is so much stuff about Ebola that it is difficult to get visibility.

To my knowledge there has been two Ebola-related crowdfunded initiatives. One has successfully raised<https://experiment.com/projects/can-we-defeat-ebola-with-an-experimental-cancer-drug> $5K for OncoSynergy. The other one<https://www.crowdrise.com/CureEbola>, launched 8 days ago by a scientist at Scripps, is trying to raise $100K to support research in her lab. It has raised $56K so far, much of it in reaction to a local radio program. Given the state of near-paranoia about Ebola that is sweeping the US, this seems low to me.

Like all my blogs, this one has been (re)twitted to thousands of people, and reached all my LinkedIn contacts. But people have not clicked. I hope it does not narrow our options.

Bernard


On Fri, Oct 17, 2014 at 11:19 PM, Jaykumar Menon, Prof. <jaykumar.menon at mcgill.ca<mailto:jaykumar.menon at mcgill.ca>> wrote:
Wonderful Bernard!   Powerfully and creatively  and constructively argued.  With some literary flair to boot.

And  Open Source Pharma (and Rockefeller Foundation and Open Society Foundations) makes Forbes!

J

http://www.forbes.com/sites/bernardmunos/2014/10/16/beyond-heroism-and-denial-how-to-fortify-our-response-to-ebola/
Bernard Munos <http://www.forbes.com/sites/bernardmunos/> Contributor

[Bernard Munos]
Beyond Heroism And Denial: How To Fortify Our Response To Ebola
Heroism and denial have been the hallmarks of the Ebola crisis. The heroes are the front-line healthcare workers, 400 of whom have caught the disease, and 227 have died. Despite their bravery and sacrifice, however, skepticism and bureaucracy have slowed the response to the disease, and helped the epidemic gallop out of control. The outbreak that was first reported in December 2013, and only had about 50 identified cases in March<http://in.reuters.com/article/2014/10/15/us-health-ebola-chronology-idINKCN0I42NG20141015>, has now spread to 8900 patients, half of whom have died – 40% in the last month. It has entered its exponential phase<http://www.nytimes.com/interactive/2014/07/31/world/africa/ebola-virus-outbreak-qa.html> with the number of cases doubling every three weeks<http://www.washingtonpost.com/national/health-science/the-ominous-math-of-the-ebola-epidemic/2014/10/09/3cad9e76-4fb2-11e4-8c24-487e92bc997b_story.html>. The numbers of cases and casualties have gone up ten times since June<https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0CCAQqQIwAA&url=http%3A%2F%2Fwww.economist.com%2Fblogs%2Fgraphicdetail%2F2014%2F10%2Febola-graphics&ei=Fwk8VP_GIabksATu34Fg&usg=AFQjCNFqoHONlZ2Wc64kDVM_Rb7wPLGifg&sig2=xN0Xi>. Will we be looking at 80,000 patients and 40,000 deaths by the end of the year?
Despite the naysaying<https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=newssearch&cd=3&cad=rja&uact=8&ved=0CCoQqQIoADAC&url=http%3A%2F%2Fonline.wsj.com%2Farticles%2Fthe-ebola-twilight-of-public-institutions-1413415407&ei=Z0A_VJXECcr5yQSa8IDgAQ&usg=AFQjCNFB0o14cXTtHU81FlTH>, a more vigorous response is finally under way. But it is not keeping up with the disease<https://www.bbc.com/news/world-africa-29563530>. The U.S. is building 17 treatment centers in Guinea, Liberia, and Sierra Leone that will receive 1700 patients when completed. But the crisis managers reckon<http://apps.washingtonpost.com/g/page/national/containing-ebola-what-it-would-take/1366/> that between 10,000 and 15,000 people need to be in treatment centers now. In Sierra Leone, which has 3000 patients, the shortage of caregivers and severely overtaxed medical facilities, have already caused authorities to concede defeat<http://www.nytimes.com/2014/10/11/world/africa/officials-admit-a-defeat-by-ebola-in-sierra-leone.html?_r=3>. They will now send patients home and try to care for them there, a frightening prospect given the potential for spreading contamination among families and neighborhoods. Doctors Without Borders estimates that treating each Ebola patients takes 53 gallons of water daily, as well as 20 gallons of bleach, 8 pairs of rubber gloves, and 3 body suits<http://graphics.wsj.com/treating-ebola-by-the-numbers/?mod=e2tw> – requirements that are well beyond the means of a country whose GDP per capita stands at $613.
To make matters worse, we are fighting without weapons. Although Ebola emerged almost 40 years ago, it has no vaccine or therapy. Part of the reason is that Ebola has historically been confined to poor African countries which cannot pay. But the problem is also that one cannot do clinical research without patients, and one can only find patients during epidemics. In between, there is no one to try vaccines or antiviral medications, and research grinds to a halt. When the virus returns, unpredictably, it always spawns a crisis which makes it very difficult to plan trials, obtain authorizations, recruit sites and patients, get consent, train workers, prepare and ship material, and carry out the minutia required for rigorous, ethical research. Previous Ebola outbreaks<http://www.cdc.gov/vhf/ebola/outbreaks/history/chronology.html> have lasted from 1 to 6 months, and the largest one sickened fewer than 426 people, hardly enough to run trials. By the time clinicians are ready, the patients are gone.
Yet, despite these odds, scientists have risen to the challenge. They are the other heroes of this tragedy. Developing vaccines is difficult and often takes many years – we are still awaiting them for HIV and hepatitis C – but scientists at GlaxoSmithKline were able to produce a candidate that yielded promising results in monkeys, and entered human safety trials<http://news.sciencemag.org/africa/2014/10/tough-choices-ahead-ebola-vaccine-trials> in September. If all goes as planned, some 10,000 doses could be available for efficacy trials by January, an extraordinary achievement. Other vaccines developed by the Public Health Agency of Canada and J&J should also be ready for research early next year. [We should applaud these companies for remaining active in an area of research that is out of favor across much of the industry. Their employees and shareholders can be truly proud of their contribution to rescuing society from the threat of a global plague<http://www.huffingtonpost.com/dr-margaret-chan/ebola-cuttingedge-science_b_5965502.html?&ir=Politics&ncid=tweetlnkushpmg00000016>.]
But 10,000 or 20,000 vaccine doses won’t stop the outbreak, and the five drugs in development<http://www.fiercebiotechresearch.com/story/10-drugs-could-stop-ebola/2014-10-14> are too early in the research process to be of much help to most patients.  Let’s be real: to tackle Ebola, we must do much more. We must join forces, and scale up our research efforts to a level never achieved before. We must marshal the intellectual and creative resources of the global scientific community, and apply them to the disease.
Fortunately, we can do it, and do it quickly. The last decade has seen the emergence of on-line crowdsourcing platforms that can reach millions of scientists and solve the toughest problems in weeks, at very modest cost, and with a success rate of over 80%. The most popular one, Innocentive<http://www.innocentive.com/about-innocentive/facts-stats>, has over 300,000 “solvers” on standby, and, through partners such as the Nature Publishing Group and Scientific American, it can reach over 13 million scientists worldwide. Since 2001, it has solved over 1,500 dauntingly complex problems for about $40 million – or less than $30,000 on average per problem.
How to harness this firepower? By issuing several challenges to the global scientific community:

  1.  Design inexpensive and improved diagnostics that can quickly detect the disease in the field. To control outbreaks, we first need to know who is sick. One of the first symptoms of Ebola is fever, but not everybody who runs a fever has Ebola! – especially in malaria-endemic areas.
  2.  Identify drugs with potential anti-Ebola activity among the 2000 or so FDA-approved medicines. This is not as far-fetched as it may sound. Prestigious journals<http://stm.sciencemag.org/content/5/190/190ra79.abstract?sid=ecf907f6-a4ae-4b37-a29d-474963a53068> have already published evidence of activity<http://www.plosone.org/article/fetchObject.action?uri=info%3Adoi%2F10.1371%2Fjournal.pone.0060579&representation=PDF> among some drugs. This is not surprising. Hundreds of drugs approved for something have been reported to be active against unrelated diseases – and sometimes approved to treat them. In 2012, the NIH launched a drug rescue program<http://www.ncats.nih.gov/research/reengineering/rescue-repurpose/therapeutic-uses/therapeutic-uses.html> to find new uses for drug candidates that had been abandoned before approval. Scores of talented pharmacologists rose from the crowd, and identified compelling potential new indications<http://www.ncats.nih.gov/research/reengineering/rescue-repurpose/therapeutic-uses/projects-2013.html>. We need to apply that sort of brain-power to Ebola. Approved drugs are safe – if used at the approved dose, or below. They are also often inexpensive, and widely available. Even if only partially effective, they might still help reduce the transmission rate – the number of persons infected on average by each Ebola patient – to the point where the epidemic starts declining.
  3.  Design clinical research methods and trial protocols that are more relevant to Ebola patients and their healthcare systems. Western clinical research relies upon a medical infrastructure and a quantity of trained medical workers that simply do not exist in West Africa<https://www.bbc.com/news/world-africa-29324595>. Liberia has 51 doctors to serve 4.2 million people, and Sierra Leone has 136 for six million. Insisting on exporting our standards severely curtails the amount of research that can be done, and curbs our ability to respond to emergency situations. As Jeremy Farrar, director of the Wellcome Trust, puts it: “Not a single [patient] has been offered anything beyond tepid sponging and ‘we’ll bury you nicely,’… It’s just unacceptable. We have to work out how to ethically, and practically, undertake the essential clinical research in an emergency that is critical to save lives and reduce disease transmission.”
  4.  Design healthcare worker protective suits that are more effective and less cumbersome. The current gear<https://www.bbc.com/news/world-africa-29577175> includes a surgical cap, goggles, medical mask, respirator, medical scrubs, overalls, double gloves, apron, and boots – a hodgepodge that seem to be crying for a redesign. Better suits should be not only simpler, and safer to put on/off, but also reusable, and include cooling devices and the use of breathable materials.
  5.  Design reusable protective suits that can be used by family members at home
  6.  Design low-cost treatment centers, isolation units, sterilization equipment, crematoria, waste disposal systems that can quickly be deployed and assembled where they are needed, including rural areas. Come up with innovative ways of staffing these centers.
A great feature of crowdsourcing is that it is not only powerful and very economical, but it also scales easily. All the above can be undertaken in parallel, and solutions will start arriving in a few weeks to a few months. Once they are available, they should be posted in open and free access to insure transparence, and give the global community an opportunity to further improve upon them. Open-Source Pharma<http://www.opensourcepharma.net/>, an initiative recently launched with support from the Rockefeller and Open Society (Soros) foundations, could be used for such purpose.
The cost of the current outbreak<http://www.fiercehealthcare.com/story/cost-of-ebola-outbreak-west-africa-health-workers-training-32b/2014-10-09?utm_medium=nl&utm_source=internal> has been estimated at between $9 billion to $32 billion, depending upon the spread of the epidemic. A crowdsourced solution might cost 1/10,000 of that in prize-money. Even if we continue to pursue other solutions, it is an option that we can ill afford to pass.

From: opensourcepharma [mailto:opensourcepharma-bounces at lists.okfn.org<mailto:opensourcepharma-bounces at lists.okfn.org>] On Behalf Of Bernard Munos
Sent: Thursday, October 16, 2014 7:22 PM
To: opensourcepharma at lists.okfn.org<mailto:opensourcepharma at lists.okfn.org>
Subject: [opensourcepharma] Beyond Heroism And Denial: How To Fortify Our Response To Ebola

Hello,
This is just to mention my blog entry<http://www.forbes.com/sites/bernardmunos/2014/10/16/beyond-heroism-and-denial-how-to-fortify-our-response-to-ebola/> about Ebola on Forbes. It discusses a crowdsourced response to the crisis, with results to be posted in open free access on a site such as opensourcepharma.net<http://opensourcepharma.net>.
Best,
Bernard




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