Transcripts For DW DocFilm 20190504

European elections twenty nineteen may twenty sixth on g. W. The ice bucket challenge in two thousand and fourteen people all over the world reporting ice water over their heads in a bid to focus more medical research on the rare motor neuron disease a. L. s. They posted the videos on social networks and raised millions in private donations scientists took note theyd seen how their laboratories and the public could be just a click apart. What would you rather we didnt just think of us i think we can now invent new drugs faster i fin and i believe theres so much more that we can do. With wide public support medical researchers can tackle diseases at the pharmaceutical industry overlooks. In the land of social media cats rule one of their stars is lil bub she looks a bit unique but she was exactly what two molecular biologist from berlin were searching for. Not be able to under all the secrets. Even you know what. A. Scientist daniel he brought him a jar of the pianos worked for the Max Planck Institute for molecular genetics. Finally. One night i was on the internet and this cat documentary came up in my recommendations and one of the cats they showed was a little bug and they said she has six toes which was interesting to me but ive seen that before and then they said the cats also small because shes got weird bones which means this cat has both a limb formation and a bone malformation and i thought this cant be happening it doesnt come. This is precisely the true scientists specialty they deal with hereditary diseases. From this complete interview going to the next day i went to daria and said you have to see this cat you wont believe what shes got of we knew that there are genetic mutations that cause limit from actions and also mutations that cause bone malformations but ive never seen a combination of the two so i figured the best thing to do was to sequence that which is our special it was totally amazing that something we normally do in our institute which makes most of our friends yawn was related to something that interests millions of people and you mentioned they set out to decipher the famous catch genome but Laboratory Analysis is expensive so the two researchers move to make use of little bubs high profile the tiny town of bloomington indiana. Will follow. With over two hundred thousand you tube subscribers and three million likes on facebook the feline reaches a vast number of people. Social celebrity we wanted to do abroad not only most of us but kind of get think also the financial or people a common interest in understanding what is behind the certain features that lead up us. Will bubs own or microsofts he was thrilled for him his cat stardom was never an end in itself. When she started getting favors i mean its a pretty strict rules with if were going to do this that there should be some sort of positive message attach where is are you know reached out. That was three exciting. The berlin researchers launched a Crowdfunding Campaign in two thousand and fifteen crowdfunding draws on the vast number of people using the internet. The cats fans were able to donate small sums to the crowdfunding platform the scientists needed a total of sixty five hundred dollars to cover part of the Research Costs but people donated even more and in the end it brought in over two hundred dollars. Now the Real Research trip began. So normally what happens you know because. You basically work in the lab for i dont know two or three years and then you keep your results and theyre not the same then you basically release all your results we can from the second belief and experience because first you can get engaged socially with the people that theme that actually your Research Interest and then doing the entire process you can communicate with them. The money for a little bubs genome decryption came together within a month mike sent a sample of the cats blood to berlin abraham and his colleagues captured the most. Meant for the donors. To find anywhere secretly you know. Staying in touch with the public was a completely new task for the researchers suddenly they themselves were the focus of an audience but it also gave them an opportunity to make science more transparent. We are going to try and do on this done follow how did you know function on an hollow and duration scene that you know can lead to human defeat. The analysis found that little bug was suffering from an unusual accumulation of genetic mutations. Osteo patro cysts a rare bone disease where the bone tissue becomes considerably more dense was the most obvious she also had how the dr lee hands her six claws. As humans can be born with surplus fingers and toes as well little bubs genome could help understand these rare hereditary diseases better in the future. As it comes on crowd funding could be a good way to enable research into a particular rare disease because that doesnt happen a lot otherwise funding agencies give a lot of money to medical research but its often difficult to get money for Rare Diseases so im. Crowdfunding as a way of enabling research that might otherwise not happen. But actually they move in that the bus husky some addition that nobody has discovered before in the study of the. Gun. Information that we have not seen previously before not there in other move to change into. New forms of Research Funding are particularly needed when no one else is investing hardly. Anyone knows this better than the people at the alliance of chronic Rare Diseases were meeting christina loss. With the voice of those affected by red diseases. That affect some four Million People in germany alone but few of them suffer from the same rare disease. Doesnt on any american terms its normally a few thousand people but it can also be only a handful of patients worldwide. Patients like josefina schultz whos ten years old today she was born with a swellings and a heart defect. Her parents went from doctor to doctor but no one could give them an answer it took eighteen months to get a diagnosis josefina has a rare genetic disorder williams syndrome but she still has a normal Life Expectancy when i visit if youre affected by red izzys it means first and foremost that you have to search parents tell us what an enormous burden it is for them to know that something is wrong with their child and not get an answer as to what it means and where it leads to why didnt what is when. The pharmaceutical industry focuses on the development of therapies for common diseases secrets home from the association of Research Based pharmaceutical Companies Says this is the right approach. For now nobody is responsible for basic research we have a total of thirty thousand diseases six to eight thousand of them are rare in view of that i think its obvious that the pharmaceutical industry cannot tackle all diseases at the same time. Con Research Spending by governments in the pharmaceutical sector has been rising for years there are a must to achieve the e. U. s lisbon target of three percent of Gross Domestic Product germany austria and switzerland together invest about one hundred twenty billion euros in research and development every year. However those affected by Rare Diseases do not automatically benefit the pharmaceutical industry applies a simple formula. View i think history class how common or how rare is the disease. Is there any basic research that shows how it could be treated. Or can and can we expect research into it to pay off at some point. But i. Was taught. Many people affected by Rare Diseases a hope for new drugs or gene therapy but its a complex process scientists must first find and develop an active substance then they tested on animals so as not to endanger humans. These studies alone often take years. When done been then when all the trials have gone well if you go into Clinical Trials that is into research with actual patients initially healthy volunteers. Of around ten thousand active substances evaluated in Preclinical Research only about five actually get as far as Clinical Trials active ingredients are tested in three faces off and on many thousands of patients and the drug will only be approved if the Clinical Trial goes off without a hitch despite the whole thing takes about ten to thirteen years and cost several hundred Million Dollars. The pharmaceutical Companies Prefer to invest in projects with high profit expectations Rare Diseases are not included theyre often complex and unprofitable christian among us sees the challenge of this in the same congo you know that red is easons can only be treated in an interdisciplinary and cross sectoral way. That means networking is crucial on this the digital revolution of course supports us in this. Digital techniques are incredibly good tools for his quickest he says middle. But where the market shows no interest in the state and now society can step in with donations if necessary. It worked with the ice bucket challenge at least one hundred forty Million Dollars in donations were collected worldwide and a year later the researchers could actually report a success. They were able to replace the damaged protein ls with a synthetic one in the laboratory thus preventing the death of affected cells but still no sense of the new claws on the we have to be aware that this probably wont happen again in that way and we also have to be aware that the people who made the donations didnt necessarily learn a lot about the disease but learn carved by only enthusiastic celebrities tipping ice cold water over their heads and the following it attracted. Is i. Wasnt to follow what. How big does the crowd have to be. Many followers as it takes to tackle the thousands of Rare Diseases why does someone sick when we have the tools to help. Romania or ts founded the Global Aid Organization roger nomics in two thousand and twelve. It helps patients with Rare Diseases to finance genome analysis. Yes mean fun for a clean and her brother are two of them. D. N. A. Analysis showed that the siblings had different gene defects that required completely different therapies. It is very important to sequence people great to see this is the main reason has over eighty percent of very diseases are known to be genetic in origin. Comprehensive Health Insurance is a luxury in the us some families have gone bankrupt trying to treat Rare Diseases. I work directly with families to actually talk to the Insurance Companies to act ask for Insurance Coverage and every time here early on they say oh its experimental this experimental tests can cover it and we started helping any families that we would offer that as an option if they could not for the to. So he theyre also trying to do Insurance Coverage and thats a network we. Have been doing youre willing to do that. Mix a companys patients from the Crowdfunding Campaign through analysis of the results to possible therapies. Ive seen just in the past four years alone there has been a big increase in interest in Rare Diseases and in pharma the more research that is done the more findings you know. Associated with disease the more people will be interested in. Networking and crowdfunding are useful tools for people suffering from Rare Diseases. But theres also a need for political oversight. Incentives have now been created at the e. U. Level to encourage the pharmaceutical industry to tackle ranges he says and also to see the appeal in developing drugs for them and thats and he can. These incentives for the pharmaceutical industry include simplified approval for seizures and better patent protection at the same time the costs of d. N. A. Analysis have fallen dramatically when the human genome project was launched in one thousand nine hundred it was the first time that all three billion base pairs of the human genome have been identified and mapped. The project took thirteen years and cost three billion dollars today you can have your genome sequenced in a single day for about one thousand dollars and the price continues to fall. The highs the drop in the cost of sequencing means that you can suddenly do anything you can think to do. Come to the fortune income. But what impact is having to first court that broad public via the internet have on research. What sort of projects stand a chance. Its. Were flying to london where british researchers were the first to lay bare the impact of l. S. D. On the brain using modern scans. The proposal was an online crowd pleaser instead of the target of twenty five thousand pounds the Crowdfunding Campaign brought in more than twice as much. Hi guys. David knott is a psychiatrist at Imperial College in london by scanning the brain out of the influence of l. S. D. He wanted to create the first precise imaging study of the drugs effects for medical purposes his priority is the treatment of depression. Depression is the largest disability in the western world including germany because the clintons are very good conditions young continues all ones life and so its very expensive but weve made so little progress in the last twenty years that most pharmaceutical companies have given up and that means we its now up to us as scientists and technicians to take up the challenge. Not is focusing his research on psychoactive substances its a difficult but he thinks promising field of research. Classic antidepressants like prozac they increase a return in the brain and they protection from stress they dampen down the stress response its so venture you know you can cope with the stress of life but the psychedelic play kind of reset the brain so that you can overcome the stress rather than protect yourself against. The w. H. O. Classifies l. S. D. Is highly dangerous which means no public funding for research into the substance is available. It is not a medicine theres only one class and that class is the most harmful and once youre in that class its very hard to work with. The money from the crowd funding can help david complete his imaging study subjects were given l. S. D. And put into the brain scanner with unexpected results. We found exactly the opposite of what we predicted we thought people having a trip on magic mushrooms or as the seeing all sorts of wonderful lights images you know theyre traveling through space and going to magic mountains and things we thought their brain will be activated its not switched off. Because these drugs disconnect you from the outside world youre seeing the inner workings of your mind rather than the constraints is put on your mind. And thats why they work in depression because they switch off the circuit of depression to people write to me every day almost saying can i have the treatment i say no because were not allowed to give you the treatment because its illegal. Further studies are needed but the British Medical Research council which is responsible for Research Funding is still skeptical money from the state for research into class a drugs its unthinkable. There are two kinds of harms the drug can do theres a harm the drug can do to the people who use it and the harm that drugs can do to society as a result of people using it. And when you look at societal harms way way above Everything Else at the top there and then. Its just so psychedelics have no societal harm we may even have benefit if the. Research against the mainstream is exhausting because state support programs deliberately and quite rightly contain control mechanisms ethics committees constantly reassess the benefits of the general public and the dangers of the test subjects but david not thinks crowd funding is also important for another reason. Hes part of a bigger profile of communicating science and also communicating the obstructions to science thats actually critical because were in this stupid position of having banned drugs for fifty years because the traditional media refuse to think differently in social media youve got much more opportunities to communicate the truth to people so so i see crowdfunding as part of a larger public. Communication strategy where we get people to understand that their families are being disadvantaged because a lot of. The usually. If they stayed in the pharmaceutical industry dont support it can the crowd really step in and even Impact Health policy will medical research become like grassroots democracy in the future. Where it seems to be more easy to mobilize people for the. Research was a bit different in my case. Were visiting christopher rom and stockholm hes also been trying to obtain funding for his Research Topic first from conventional bodies then through crowd funding hes a psychiatrist at that carolyn institute and wants to study the treatment of pedophilia. Tried the traditional way. Many many times but i was declined all the time the people reading this application maybe some of them have personal opinions on the topic there is not in my backyard syndrome around this. There are issues nobody wants to know about although theres a real need for action. The overarching aim of the study is to find ways of reducing the number of child sexual abuse is by establishing an evidence based scientifically proved. Method to treat adult men with pedophilia disorder some studies indicate. Adult population one to three percent have sexual fantasies and more than children almost one in ten girls. Sexual abuse during childhood and one in twenty boys and in almost fifty percent of the cases it is done by someone with pedophilia disorder. Wants to find out whether a Prostate Cancer drug can also preventative lee help pedophiles by inhibiting the bodys own to start their own production. Looked on the brain functions behind these risk factors hyper sexuality. And disturb selfregulation and i saw all these brain functions had in common that they were partly regulated by testosterone in a way that if you remove the first or strong then it would have a beneficial effect on the risk factors after being refused government funding in sweden christopher started a Crowdfunding Campaign on the english web page crowd science in two thousand and sixteen with everything a Campaign Like this needs. But i had to find something to give in return in my case of. Early results to get to know of the results of the study early and to maybe come here and visit the. Post called some t. Shirts and i think. The outcome was devastating crowd showed little interest and not even twenty five hundred pounds were raised. Thirty eight thousand. But then when i counted the money when i looked on their count. Most nothing came in if you sponsor this kind of project maybe people think that have some kind of personal link to the problem to you know something that you have been the victim yourself or Something Like that and most People Choose to not because of that i think. Rons now turned his back on crowdfunding for the time being hes recognised that science is facing new challenges. As a researcher you must change your thinking you must you know convince the layman. People are not involved in research at all. Its clear society should not leave decisions to the general public exclusively anymore than it should to the pharmaceutical industry. Some startups are taking a different approach they dont involve the crowd as private donors for a good idea but as participants in an up and coming company. Our Research Leads Us to a christian sits in berlin his company is developing a therapy for aids patients. Its not really a selfstarter because Public Perception of aids is that its now less threatening but thats wrong the virus is adaptability means it can quickly become resistant to existing drugs. Mice in many come into most drugs in the current standard therapy target the Building Blocks of the virus itself. Our substance attacks the Building Blocks of the human cell on which the virus inevitably depends because if you shut down those Building Blocks the virus cant replicate the bush the new cute comes feels many people. More than two hundred donors have so far invested over three hundred thousand euro in christians its a start up. And theyre hoping to profit from the sale of the companys shares the risk is high but this sort of crowd investment spreads it over a wide investor base. So mining is on the one hand its very difficult to attract larger investors during the early phase which is where we are still. But you do get the chance to let people know that while treatment for hiv is good the virus is still a problem in boston. But the crowd doesnt just provide funding for medical Research Many projects also call for the bundled knowledge from a community of researchers. Really high on top of that. I mean just. Go any. More. In mumbai india mumbais location and population density make it a stronghold for transmittable diseases the monsoon in june also brings in mosquitoes sixty percent of the city consists of slums the much loved breeding ground for the mosquito genus enough a lace. The females transmit parasites one sucking blood which causes malaria. The National Chemistry laboratory and. This is where it. Is doing research into antimalaria drugs. Definitely is not. Population in fact. Settings like. For example in mumbai in india we do. So every year after the monsoon rains here you have. Patients coming into hospital with malaria. With two hundred million new infections worldwide every year malaria is hardly a rare disease nevertheless the development of an effective drug has been sluggish. Diseases like you know i think once you become obese then. Come. Along and there is a lot of money to be made by. Companies because they can sell you an extended period of time with the infectious disease. Especially for. You know just two weeks treatment. The scientists have to deal with the pathogens mutations despite Extensive Research to fight against. Different pathogens from region to region genetic differences in people affected coinfections with other germs and increasing resistance have all conspired to slow the development of a reliable vaccine against malaria. The Swiss Foundation medicines for malaria venture supports scientists in india and other affected countries working with scientists from countries that actually have malaria is really important you always hear in the news that you know there are new mutants coming up with new or even new species arriving but also just to understand is really important. The m. V. Foundation distributes important Raw Materials from Malaria Research in the form of a malaria kit to dozens of Research Teams around the world the only condition is that the results must be freely accessible to all similar to open Source Software that anyone can work on. And everything must remain patent free so that future drugs do not become unnecessarily expensive. This millennium bugs has four hundred molecules some of them have the potential to become drugs real drugs. But a lot of science needs to get done at the fundamental level to understand how this money goes for what theyre doing so m. B. Is willing to give this money goes to immediate search or anywhere in the world free of cost as long as they promise to shadd the data which comes out of their search so one of the things that a lot of the open source work has done is bring the whole Community Together with common standards and common. In this case infrastructure is being created in affected countries that will allow research to go ahead independently of endowment funds. The scientists including now produce the expensive molecules themselves which also accelerates Malaria Research. A colleague from the Singapore University of technology is here on to visit. His Research Also benefits from the results from india because he can use them without any restrictions so one of the things we try to do we looking at chemical libraries and i didnt fake molecules that can block any mission of the parts it and then look at whats in the part of it or and. That are affected by these small molecules that line of Research Using that sort of molecules are doing in my laboratory the only possible because of that open Access Library made available to a monkey. Today the results are spreading faster than the pathogen itself. Shanmugam is confident. We have discovered these two sets of molecules within the malaria box and once we understand how they work what is their target and then we will test whether better states have the ability to become resistant to these things. Its now completely normal for the Research Team to exchange results with colleagues all over the world. Its a huge cultural change. One of the deep questions is how you train the next generation of leaders in Drug Discovery for neglected diseases from the countries and so so there are very very few groups in the world say you know africa in south america. In Southeast Asia or in india who where you have a leading International Scientists working on Drug Discovery so anything we can do in these projects are very good for that. The fact that the results of networked research are open to all accelerates the increase in knowledge enormously. But sometimes patents block independent development. I linda grant works for the american parcel Miss Foundation its mission is to Bring Research neglected by industry to market maturity contraceptives for example our founder of the language. Was very impressed with the work on rice which is a product thats. India that is a device using a job and actually enjoying the rights to the outside. The cost ninety thousand euro. Vessel gel is a nonhormonal polymer gel that specifically blocks the vast difference and prevents sperm transportation for about ten years. The principle is comparable to sterilization but can be easily reversed because a second injection can just rinse the gel out again. Its been tested successfully on humans in india for years however the w. H. O. Raised concerns and prevented western countries from participating in the study the foundation is now aiming to change that. Thats a. Good market. Its a horrible. Is not. The devil which you know estimates that there are eighty million and want to pregnancies every year but the development of contraceptive methods for men has stalled and not only because of male concerns about the side effects of hormone treatments. And more to louis in missouri and how i believe i have got. This gene. Now products they feel that if they develop products may compete with the samples that they are. The parson is foundation is now looking for donors to bring the contraceptive to the market well were seeking it is. Socially minded individual investors who may want you know some kind of return on her. Mobile you are more interested in the social good we also would. Like to come in and finish something so you want to use that person as a big project in regards to maybe get in. On. The study in india will continue in parallel however the product has hardly any chance of entering the western market from there getting approval for new drugs in europe and north america is a very complicated procedure. Intentionally so to protect their respective markets. Networking is also an advantage in commercial medical research and has made a new type of Pharmaceutical Company possible one that isnt large and slow but as many small active cells around the globe currently there are a lot of startups like this so we went to look at one. Particular group to think about it. Because youre right Jonathan Montague is the managing director of hotspot there are a few ticks a boston based company the chemist himself lives in berlin and directs employees all over the world from here. My hot spots are going to be so we say at hot spots the sun never sets of experiments and that means our experiments are going on around the clock. The basis of our Research Approach is an understanding of how nature wegg you late certain proteins. Ones you can and now we can design new drugs that mimic these processes. Yes and now were into a death which means we can manufacture new drugs for cancer auto immune diseases and other illnesses hashed out on. A Computer Program displays the protein atoms three dimensionally allowing the researchers to move around inside them in search of suitable substances. Theres also for sure there computation or chemistry. When our computational chemistry researchers use screening methods to examine millions of substances in a Virtual Library to find a match for the target protein from stupidity and. Its like an extremely challenging puzzle where many researchers around the world are searching for the right piece. As gifts. There are disadvantages of course. Our scientists have to be very organized to work with so many Different Companies scattered around the world. And its to my spirit. Mind for example you have to get up pretty early to do a teleconference with china. And they also have to get used to not carrying out the experiments themselves if you want. Personnel in china costs only a quarter of what it would in germany or the u. S. So can you do four times as much with the same money that would be a turbo charger for research. Jet in montagu has already gone to results with chinese researchers when colleagues in the u. S. Are just pouring their first. What can such a small team achieve. Yeah definitely like the advantage of a small team is that interpersonal communication is easier and we can have everyone in the same room and interactions. Globally scattered and yet still all in one room this flexibility is a boon to medical researchers around the globe. The various approaches are diverse and from a sick Network Laboratories Free Research and the crowd funding for finance but theyre still not universal panacea. It can be very fashionable when you talk about the old computer stuff or sequencing the Drug Discovery stuff is a whole lot more. But they are helping to create new spaces for Research Outside the precisely demarcated territories of pharmaceutical giants. It really sets off. A progress a lot of Scientific Activities not only one number two but many liberties level. And the masses are crowds wise enough to rally around the right ideas to finance them. I think its both pros and cons some projects. Are this color for irrelevant for instance in the traditional process to get funding that can be done thanks to all the anonymous and the most but on the other hand some projects that are discarded for good reason by the traditional Research Funding but this also risks being done. Its not just the content thats changing the researchers from. Selves also have to adapt and intensive exchange with the public is something very new in the laboratory. Really important us big. Scientists we need to do. And we need to improve is to be able to bring the public exactly what we are doing but also be actually doing a crowdfunding. Communicate science to be but even if they dont fund it because its out there your advertising your science and beat people can choose to i guess maybe less than one in fifty choose to fund the other forty nine year of. Medical researchers fighting for Media Attention hoping to be seen by online crowd funders. And the pharmaceutical industry is watching and waiting. For projects that could still make a profit. May have inspired People Companies to get back into this because now they see there is a treatment. Center the conflict zone with tubes a bastion. Of the challenging those in power asking tough questions demanding. As conflicts intensify ill be meeting with key players on the ground in the sciences and. Cutting through the rhetoric holding the powerful to account thats the conflict. Conflict conflict zone with insufficient on d w ws. My first boss moses sewing machine. Where i come from women are almost by this ocean full of men something as simple as learning how to write a bicep those isnt. Since i was a little girl i wanted to have them by cycle of my home but it took me mr been there. Finally they gave up and went on by me on bicycles but returned because sewing machines sewing i suppose was more apt procreate for girls than writing advice as knowledge i wanted to reach out to those women back home to put bones by their duties and social norms and inform them of old dead basic rights my name is the amount of people who and i were at ease of. This is d. W. News not from but it thailands king officially takes the throne ceremonies take place in bangkok for the countrys first coronation in seven decades our correspondent is out the see also coming up Officials Say its a miracle no one was killed after a jet slides off the runway at a u. S. Naval station in florida and. The boy in the last race before a controversial rule change in track and field Caster Semenya zero zero