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Even within the industrialized world we cannot guarantee access to affordable essential medicine for everyone. In developing countries the situation is even worse. Can crowdfunding provide money for the production of out-of-patent medicine? Can citizen science be used to supervise the pharma industry?
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and the kind of the but you just can't
what she's physician graphic
designer and researcher in the field of health communication and other visualizations and she's a person behind the idea of citizen farmer thank you very much
and the welcome but 1st of all I'd like to thank the Organization Team um for making this reality of retail and I can't even imagine how much time and effort is spent that uh that making this happen so thank you very much for that the I think working as images doctor for years and I think that the all of us working in healthcare remember certain patients situations moments at specific and 1 of mine was a call for the during the nite to m 3 m and we arrived at the apartment an amazing elderly lady open in the mid eighties the and as you complain of pain in the breast shit that's your trouble that blood pleasure felt dizzy and so on all we cared about her and as I
faster among many other things of course yeah uh about her medication and he gave me uh big bunch of the pill boxes and packages and tablets and I went through it and checked it the the and I realize that but to a 3rd of it um past the expiration date and asked her to dimension that and do could be at least part of the problem we have at the moment and she said well yes I do and I always try keeping medication from my friends and relatives who don't need it anymore don't take it anymore because I can hardly afford to buy the prescribed to trucks I'm taking the and she felt so embarrassed about that and that she started to cry which was a really heartbreaking moment and 1 last nite of that is real medical care many problems in health care we have are low-tech to know tack um she obviously didn't understand the system how to get reimbursed and obviously we have a problem taking wrong medication or expired medication and here um we don't need a nap but we need people who care for that the and on the other hand this the other less is that we're living in a world stereotypes starting a discussion about fair axis to medication immediately turns to a discussion about developing countries that have the image of the pore Afrikaans in the middle of nowhere er needing the nation's from the richer countries because this is the target group but of course we have a problem at home as well we have a global it in a globalized world we have this as a globalized problems the and so in different ways in different characteristics of course but uh mn well we have it and this has been unmasked at least in parts um in shitstorm last year so what happened to it started as a usual shitstorm with headlines and messages Twitter messages like this 1 x hedge fund erases price of AIDS drugs from 13 50 to 7 50 per pill so detested x hedge fund increases prize of poll Chretien arcade raises prize of terror prima from 13 50 to 750 so who is that guy at this x hedge fund nerdy tested x'j funded medium appeared well that is montage greatly and he was at that time the CEO of touring pharmaceuticals and he was held overnight while the most hated man in america the Clinton talked about centers talked about him during the campaign even Trump talked about him he didn't like him as well which is quite interesting alliance I think and he said well he treasures format hedge fund guy reject the brucke price he looks like a spoiled brat which might not be the point but anyway monastery makes it really hard to like him he had answers like a well i've done the right thing it is so important I should win the nobel prize for this action because it's for the good of mankind and 1 of his answers was this 1 capitalism can seem oddly if you don't understand it and you are not prepared for it's capitalism stupid so I think he confirmed all the cliches we have must of big pharma and capitalism but nevertheless looking at a shitstorm it's always worth to go back to the beginning and to do so to to see what is it all about and in that case it is about their a prima prescription drug but the brand name is the premium and the compound is elementary measurement and as a medication for infections like malaria on toxoplasmosis India as mainly used to treat toxoplasmosis it's protozoal infection or parasitic disease the and an interesting disease because many of us might have had it we assume that about 30 % of world population are so-called seropositive meaning we have had contact during lifetime with that disease and usually we don't even mention it meaning there's most no symptoms of flu like symptoms and for the healthy ones of us it's really no problem but 30 % is quite a lot so 1 2 3 1 2 3 um seems pretty much the but for the healthy ones as said no danger but it is a real danger for those um with a severe immune deficit meaning patients with HIV or during chemotherapy also for newborn children can be infected by their mothers and here toxoplasmosis can cause severe brain damage I damage you can even be fatal we of over 50 deaths per year Air India's student toxoplasmosis so it's relevant and therefore they're priem is relevant and therefore it is on the wh a list of essential medicines this this has been a breakthrough because you find all the medication needed in any healthcare system all over the world and the aim was that access should be given affordable access to all the medication on this list so that is the idea know what web directory it has been sold under 2015 by core pharmaceuticals for 13 dollar 50 as the and then sold to touring pharmaceuticals and all those in in September the prize hiked up to 750 dollars meaning 55 times higher 5 thousand 500 to set so imagine the user republic that to get the regular 1 is I think 200 euros so next year would be 11 thousand min would put be interesting to see who was still come but it makes a difference of all of the contraceptive pill usually it's marriages some some 10 EUR per month and imagine next month it would cost 550 Europe and of course that would have an impact on the use many women would normally be able to afford it and that would have consequences as well so it's dramatic it at Trent uh obviously dramatic increase we have and it's not even in that case the whole truth because before call formalism by GlaxoSmithKline aligned and distributed by them and they sold it for 1 per pill so in fact we have an increase from 1 dollar 2 50 dollar in 5 years and 1 of the and in immediate questions we have is uh mn how can they do that what the heck's going on is that legal so how how does that work in that case how did that work well the 1st reaction usually drugs price increase it must have to deal with patents because patterns meaning someone has a monopoly it like an ITV of a patent uh you can buy no 1 else a salad and no 1 else but here with their priem we have an old drug it's been available since 1953 and the patent expired a long long time ago so now it is not about patents is about rights because touring pharmaceuticals both the rights yes and no yes because no 1 else would be allowed to to to sell their premium the brand their Priam but other companies would be allowed to sell a generic
version and produce a generic version of to remember me generic version usually means you have the same compound you have the same quality same indication but much much cheaper and that's the principle of generic products so why not said generic for their preen in fact we do not have a generic version available in the United States so yes it's a bit about rights but the main problem is we don't have a competition we don't have a generic version of the pre and so the only company producing and selling pyrimethamine is touring pharmaceuticals and this means they have not a technical monopoly because it has expired but a defector monopoly on the market again the 1st reaction is I mean it's uh it's capitalism as you've learned white to other companies don't stop producing it immediately if they didn't do before where why don't they and goes to the market and produce said well then we have another a bunch of problems the if learned that why is there no generic version of it we've learned that toxoplasmosis is a common disease but only few patients need fortunately only few patients each treatment few patients for big pharma equals a rare disease equals small Marquardt this is not good for the economy in it can be good rare disease can be great to them if they have a pattern that truck and then they can establish what they call Aneesh and sell it extremely expensive we have that in Germany at the moment with hepatitis C medication but here they're primas we've seen no pattern so we have small market no patent and become is not interested but maybe if not big pharma maybe a small producer tiny little uh producer well here we face another issue that any production of medication Nathan approval and the yes it's an FDA approval FDA the Food and Drug Administration and this is the agency uh being responsible for the approval process and this approval process is time and cost consuming so for them small manufacturers even then it is uh it's it's it's too much so having these 3 points the small market no patent approval and did results in once during both the rights for 2 their priem they could raise the price to any amount they wanted and that's what they've done the not the premium produced the shitstorm uh we've seen but in fact it's not the 1st time that this this happens we have dozens of other companies doing more or less the same things that is a claim is an endergonic is a really important 1 also on the WHO list of essential medication also out of pattern medication and in 2011 has been sold for 4 cents per pill in 2015 it was 3 dollars 70 couple so we have a price razor from 9 thousand % did extension of medication for heart diseases sold for 11 cents per pill and in 2015 for 1 dollar 10 so compared to the others that looks really cheap but it's 1 thousand to send and I could show you dozens and dozens of other examples like that so obviously we have a new business model finding them out of pattern medication without a generic version on the market seems to be very attractive and obviously the traditional market model fails here it no seeing that what are the consequences and to the ball 1 reaction could be which we accepted I mean it is like it is and it's always been that we could be outrageous claim big pharma which to me is not much more than accepting it or we could at least try to change something and the question is how can we do that the and what can we do or more precisely How can we guarantee access to affordable essential medicines the and let's take that w which all is of essential medication because it's a global list and at least the out of patent drugs on this list to make it easier more pragmatic and by the way the easiest solution would be a trade agreement meaning free import and export in Germany there a prima still produced by GlaxoSmithKline and sold for 1 euro per pill so the this idea where the idea would be to send care packages from Germany to the United States was there premium but obviously this is totally illegal and in times of t to have it becomes even more fixes so this won't work the but fortunately we have uh well a wealth of ideas and organizations there only some of them it caring for axes so for essential medicines but all of them care for access for developing countries and it's mainly um worked to get access for patented trucks which are very expensive and they making deals with big pharma uh that they donate over the a reduced price and this is great work it's absolutely great work but it's it's not really a a global charge if you want the and it's also depending on the willingness of big pharma and or the willingness of uh the the the government regulations and all of them rely on the traditional manufacturing paradigm of the pharmaceutical industry still so this is not wrong but could we find in alternatives to that could find another way and could we find solutions driven by needs and not by markets and could we influence and transform the pharmaceutical industry meaning we s the civil society and the digital community and good with use maybe not primal either the wisdom of the crowd but the money of the crowd with crowdfunding in and and when we use crowdfunding How could we deal that so what could be the aim and um how find really a good solution for that so the biggest 1 would be revisions the manufacturing facility amulets by this make it on our own let's make a year opened world pharmaceutical organizations bought by the civil society finds by the civil society and profit organizations so can that work just 2 examples there's been the Institute for 1 World Health in the United States it's it labors itself as the 1st 2 nonprofit pharmaceutical company the and it works but they our focus also on the developing world so they do not produce 4 of the richer countries it's just to their chart is the is the developing world the but they got 200 million at 2 to run their company not with crowdfunding in that
case but with traditional fund-raising but nevertheless obviously they achieved the goal of another example is cheap drugs which is being Due the crowdfunding campaign and while they wanted to to get 1 million dollar for this seed this seed investment for a public benefit truck company in the United States they totally failed they got 610 dollars and obviously it is difficult but difficult doesn't mean it's impossible so and the idea still and would require the fascinating I think the biggest challenge anyway I would be that let's by its let's build in the United States or in Europe or in India but we will still have to deal with normal trade regulations meaning no free import and export to other countries so at least would have to find solutions for that issue but the biggest advantage of such a manufacturing facility would be that would produce many many drugs not only in quantity but also diversity many many different drugs out of that WHO list which would be wonderful another possibility the approval process crowdfunding the approval processes you remember that this was 1 of the negative incentives for companies where they do not produce generic versions so what about funding uh this process making contracts with existing generic manufacturers and helping them through that approved process so so that they can produce biggest challenge here is that we have different approved processes all over the world so we would have to face to to find solutions for the the United States for euro for Asia for Africa which means it's a complex thing expensive thing but of the the the real advantage of that would be that we do not care for trade regulations because when the produce in the region we don't have a problem with import and export and so this would be cool applied pragmatic solution I think 1 step further when we go deeper we could also crowdfunded specific trucks what I mean the fact just an example it was a crowdfunding campaign for open insulin referred about insulin uh i in in the discussion in the limit is for the trip FDI diabetes it's 1 of the most simple medications all over the world it's a lot on to today we don't have a real generic version of the shape and we know that about half of the population worldwide does not have access to insulin so there is a significant need and they started a project that an amazing project that crowdfunded and 16 thousand dollar for it to develop a protocol on open-source protocol to produce a generic version of insulin maybe this is the 1st step for the production but they started it and they do work and they do a great job but in that project so it's fascinating the problem is that it's only for a few drums because you can do it for um so many of them but these are really important there's a significant need for some of those drugs on the list the and it would be helpful because the pharmaceutical industry will never do that job and a it all that seems to be or sense to old-fashioned what about another idea downloadable crowdfunding well the 3 D print of your own medications that sounds section to you in August 2015 the FDA approved the 1st 3 D printed medication so it works in a way but to be honest there's still a long long way to go and if 1 medication is 1 drug it's enormously expensive it's nothing for must production and of course we have a bunch of how health safety issues would talk about that but nevertheless I mean it has the potential to radically transform the pharmaceutical production process and distribution process yeah the biggest problem to my point use that to the company cool a pioneer dead 3 printed drug has already I think of more than 50 patents on it so we're facing currently the same problems as well that the traditional pharmaceutical production the yeah the other problem is a more practical 1 yes the FDA has approved this drug and this 3 D print but this doesn't mean that in Europe and Asia and Africa this will work the same way as so the approval process will be quite tricky I think but of course I mean it would be cool to crowdfund a a attract printer for legal drugs and it's due to in produce open source software for it at all and hardware of course so all of these are ambitious project the project and I think there all this around but which of them are worth a try and here we have to take a closer look at it and we have to analyze the potential the feasibility but also the visionary aspects of uh the different projects so this is a call for action let's connect and share and uh lured from big pharma they consolidated and got more more powerful we can do the same thing so let's connect and share but I think we should not forget that we also need to uh mn if you're looking for an alternative to way to produce we we also need a lot from in information before and we need to know the prices paid for example from its in on the WHO worldwide meaning data from real people in real life situations on all the what even in times of big data there is a lack of a lot of those tiny little data the some of the drugs on an assembly of the old soul they don't conform to the current standards of what we call evidence-based medicine and we should do a lot of research they're concerning side effects interactions things like that no 1 will finance that because usually pharmaceutical research is paid by big pharma which is another issue problematic issue but of course they will never pay for out of pattern drugs like these ones and here the power of the crowd could be and at a real help and the digital community could make it work so that we could make really big steps on that and that is why we also ways should think about Croat not only crowdfunding these projects also integrating citizen-science meaning uh citizens working together with scientists uh with universities with N O's the to to make it real so again this is really a cold faction and yes the pharmaceutical industry is a big player and yes it will certainly take time and effort to to to change something even the slightest steps that I mean with 7 billion so it should be possible to make or to elastase 2 0 to start that and would be really great go initiated a fair pharmaceutical production away from the shareholder value but uh aiming for something like humankind volumes so may the Force be with us thinking and and
half so you're much period brilliant and questions from the audience the place was like the European and which 1 of the funding
options is the most promising but I think the 2 in the middle look good but with that's a very difficult question but it is a good
1 mn I think the most pragmatic month ones are those where you have a specific drug of course specific game and you can calculate how much it will take and it's kind sexy
to to invest their I think that uh approved processes would be also quite promising music and its pragmatic you need a good conference but um I think this is a regional aspect is really a really great still and less I think we can also dream about the 1st vision and uh in why not finding a solution for uh at a tax-free zone where we can produce that and at least for the essential medication on the list it's not a pharmaceutical industry like the other ones on the market so limiting to these productions so why should it be possible to find a solution in there In our dreams I don't know whether it's making but still I would like to dream about that thank you for the
expression of the the it a question regarding the other medicines and this this room so are there many lives
reasons were far out uh nations or food rather license that you have to buy the license for some of them which is like impossible yeah for from and that's true
so there are about 300 and 20 May cations on this adults about 200 and 13 for children I
think um about 90 % are out of patent drugs but the problem increases little that because we uh or the pharmaceutical industry that is developed some really am import medications for treatment of cancer for treatment of hepatitis and these are pattern truck still and they are nevertheless on the list of essential medication we will so so it will change of it but nevertheless I mean the 80 % or 9 % the majority of communication on the list is authentication and we could focus on that I wouldn't I wouldn't do care about these pattern drugs but I think uh these are here use the situation is so clear we can produce a we can't use generic version that is legal if you get in approval and then a 1
very short last question I guess that I so processes for approving medication is not transparent when that being good place to start is open saying this derivation process the approval process that the approval process and the approval
process is transparent meaning the rules are clear and if you think about a person's behind for deciding yes or no they're all will always be doubts but that process priors a this transparent is the different we have different processes in the United States and Europe in the mind agents different and in Africa it's different so um I don't know the details about the angel a for example number but you told me right this would be 1 of the tasks I think we'll do the homework to 1 before starting to have a look at these processes and regulations acid yet absolute important thank you OK I
would think your way much as a few theft some thing