dependent on fisher numbers all right fani thanks very much in fashion in abidjan. we're watching daytime in the news up next doc film looks at the power of the pharmaceutical companies i'll be back with more headlines next hour and don't forget you can always stay up to date on our web site day doublings dot com i'm rebecca riches in berlin thanks for watching. and you hear me now here's we're going to you and i last year's german song that we bring you i'm going to mass as you've never. surprise yourself with what is possible who is medical really what moves want. to talk to people and follow along the way maurice and critics alike join us from eccles lifestyle.

we know mission the claymore stand by name is michelle mone shy and i'm a father of 2 children i was diagnosed with cancer at about. 2 weeks later my life looked radically different has never been the same sorts of. even 2 rounds of chemotherapy couldn't treat mikhail's aggressive cancer only honk let. create a self if left untreated i would die in 2 or 3 months at best just so it's incredibly serious and clear. his my last hope is a gene therapy with cancer killing cells such as kim mariah from novo artists with a price tag of 370000 swiss francs and camera is just the beginning of a new drug let's turn it was injected interest on $850000.00 sold gens but it's

now the most expensive drug on earth the price tag of $1000000.00 was how willing a society to bear the costs of withholding or do you let someone die to save money because. i want these prices calculated. based on the coals pharmaceutical companies sound the market to determine what can they get out of it and with the limousine the need to form. would health insurance companies pay these record prices. for this is 370000 francs is a lot of money and we can't afford it was what can you do. it's tricky it's hard to tell what the future has in store. all you want we're going to get this cancer. out of let's hope so. make a home and has a rare and aggressive form of lymph node cancer his crooked mouth also comes from

the disease. his last hope is kim riaa a completely new treatment just approved last fall. samples are taken of the patient's own immune cells and these are sent to a noble artist laboratory in the us there the cells are genetically modified and reprogrammed into cancer killing sounds. after being multiplied and frozen the cells are sent back to switzerland. the patient receives the killer cells in one single infusion with a price tag of 370000 swiss francs according to the novara just catalogue.

it remains unclear whether the health insurance companies will pay for camera they have joined together to negotiate a discount. unlocking of the eyes and i work for the insurer has done where i negotiate contracts with the pharmaceutical industry we're currently negotiating the price of kim rai with novartis. the price is too much she says partly because it is unclear what long term effects can mariah will have and whether the cancer will return. official and it isn't quite clear to us how the price came about we didn't receive any cost breakdown and don't know why the price is so high all day it's good now is all. the pharma companies provide that gonski formally and there is no formula as to how the price breaks down i've never seen a loss of the whole i mean this and i think they try to start with as high a price as possible because in the end it always gets negotiated. the highly manoir the 1st price they set is just a starting place it's software it's a real problem if you ask me i couldn't tell you what we can give

a bill if it was in and. they discussed whether health insurers should pay. only in the event of success but what is success when it comes to cancer there's no solution in sight and for the time being every insurer is deciding for themselves. making on monch times low cost of sure to pre refuses to pay for. the benefits are not clear enough they say. the house to be honest i was furious as well because this stinks of incompetence if you're in the end it's like the wild west it was you could lie for those who can afford treatment so the ones who get a chance to have. and for others it's not clear whether they can it's 2 tier health care yes. mchale's relatives want to fund the treatment themselves but the hospital is demanding half a 1000000 francs as security. after a camera infusion some patients reactions require transfer to the intensive care

unit to leave because he. believes kindly willing to give 850000 franc advance on her inheritance. appropriate so it's credit oh it's only a few meters so i'm also getting an advance on an inheritance. when my brother spot their houses they've got their share and i haven't needed it so far so but soca want to know i'd like to use it for this and it's hope. it's not me covered almost exactly c.d.p. to get it really touch me that a lot of people i know are ready to give 10000 francs if it will help saying they know it isn't much so. there are a lot of people like that and it really touches down the hall who benefits because everyone realizes that in the worst case scenario the money will simply be gone or

the fall out and in the very worst case it won't even have done any good to fall. back east. according to novo artist one and a half years after treatment 40 percent of patients like me. still have cancer. that's a start but could it be better. those made of course with the drug i'm currently on had a 20 percent chance of success. in the south was good there were days when i thought that's it as he gets older and he knew i could only hope my final hours would go quickly told us it's done i didn't want my family to have to watch forever does that mean for me to be a never ending with a work out committee and i didn't want to lie around like a vegetable and drugs all strogatz with the. shook musique of the dog.

about a dozen cancer patients cannot be treated due to the price dispute critics might claim the health insurers are at fault with terminally ill patients running out of time and dying while negotiations my gone with no heart to see your there's this level of need i thought of but that's not the case we all share the responsibility because we have yet to find a solution to this all around less than ideal situation policy so. mikhail monch times family has scraped together half a 1000000 francs he is the 1st lymphatic cancer patient in switzerland to receive kim ryan. the border. mikhail has a muenster taken from him that will be shipped by plane to the us where they will be converted into cancer killing cells referred to as kartini cells.

will the treatment work mikail cancer is growing so every day counts. he says how many and it takes a while for the cells to be produced in a best case scenario it will be 4 weeks but it may take a little longer since so many products are sent in put up that i'm concept of that i'm called to. go ahead to ensure the funds are available to go come to ny is prepared to issue a bank guarantee that and we're supposed to deposit everything into a special escrow account that spec here's dan c. we'll make sure it's not touched but this way we can proceed with treatment by their father murphy earlier lymph node. it. was a pro. moved through clinical trials funded by novara case.

here i can feel at least 2. experts criticize the fact that the effect of can riaa has been tested on less than 100 patients worldwide before the war period was much than 2 years and camera was not compared to an existing treatment so the long term of facts remain unknown this criticism generally holds true for other trials on her diseases. but naturally patients want the treatment as soon as possible and the companies present the study results as positively as they can says antonia miller. this is the case everywhere and it's intuitive although there have also been studies with carty cells that have to be aborted because test subjects were dying and there were too many side effects up or and. because that went out isn't that crazy. wow well by most i will say yes but we're also talking about patients who would

otherwise die along with all their can comets and diseases that's. done us a world has gotten impatient and our patients have to we're not just going to say to them let's wait 5 years now that's the problem it's walking a muffin if you have. those 4 planes. the trial with these deaths didn't concern no parties which conducted follow up studies on safety and efficacy. but what do you say about no vargas's price as it was our so then price i find the prices in general to be staggering in many areas and not just those of novartis. or and these prices are completely nontransparent to patients and to us doctors or it's. someone enabling all. all of this to go on because there are vested interests and none so there are reasons why they want to be on the company's good side this

pushed into interestingly the who they're stacking the one secret in film and then measure their wives stand off it because they could also produce in india or china . so it means jobs in basel alberts that's and it's the jobs of course and if you look at switzerland for example it doesn't have much industry but it does boast a few of the world's most important pharmaceutical companies a 55 i can sell it. at no fortresses plant in the town of dine in argo switzerland we meet with the head of cell and gene therapy in europe a month away in the austrian. so this will be. this will be a key site for. they avoid talking about numbers here but cancer patients expect a price discount if the transport costs to the u.s. are eliminated. no says mr austin e.

because the production side doesn't affect the price it is the value of gene therapy that is relevant meaning a prolonged life. this is a paradigm shift because the pharmaceutical industry used to justify its prices with high research costs. the principle of value based prices is wrong health insurers say because a human life is ultimately priceless and they estimate that premiums will rise by more than 10 percent over 10 years due to the cost of medicines. and you're not afraid that the health care system could break if you continue like this. no i'm not afraid i think we can find the solutions we are open to take the resources the kinds we're open to take risks with with our

stakeholders to make sure that we can bring the therapies the patients. the pharmaceutical industry calls this risk sharing with those insured bearing part of the risk including the risk for camera which was not even invented by no bar to small. these cancer killing cells trace their origins back to the university of pennsylvania and this is far from an isolated case with more than 60 percent of newly approved drugs in the u.s. not stemming from pharmaceutical companies where i am our memory professor of the universe there pennsylvania my team invented. in 2465 years old but i've been working on the. 1992. coral june was named one of the world's 100 most influential

people by time magazine in 2018 reversed actually tested this intelligence rat h.i.v.'s faction because they had last year of the virus many of their own t. cells. 2 years later my wife died of ovarian cancer in 2001 and so i really needed to move from a child the to do really all cancer or. at the time however he did not receive a dollar from the pharmaceutical industry because the treatment initially only worked on mice but not human so ok we're what we know for sure is that. funded in a sense a way was essential to make a new industry so to have philanthropy at government support it was millions there was millions it was probably $20000000.00 i mean. i think for sure $20000000.00 were invested between what i came to university of pennsylvania in

1999 until novara said the alliance were made in 2012 but the riskiest part was state and government yes all the initial research that showed this new concept of a car teams could work was the academic laboratories. in 22 and came the breakthrough in the cancer patient douglas olson however it was the news of 7 year old emily whitehead that spread around the world thank you mariah saved the young leukemia patients my life and even 7 years after the infusion she remained cancer free. the treatment is more effective in children than adults. we had hundreds of calls for a venture capitalist warning to start new companies unfortunately had no heart us call us about one of their commercial artist. inventing a drug is one thing says novartis but putting the research into practical use

through a market launch is costly and time consuming insiders say no parties paid the university about 225000000 for the exclusive right to sell q. mariah and novartis is paying the university about 5 percent of the sales price for each infusion the group has no comment on this the health care industry is not transparent and it's not been designed for the benefit directly of a patient and transparency our most recent estimates. are around $55000.00 just to make the cars the cell that's. our cost per patient and with no profit. so the actual cost is almost $7.00 times cheaper than the university however had only done small scale trials with camera while novartis had to fund world wide studies to attain market approval and build centers to produce the treatment.

in is still waiting for his cancer killing cells from the us when suddenly a message comes from nova artists the group will give him to mariah for free. plus it was made of all saints were filled with joy and very relieved in the city. i mean you always a lot of money at stake also of azza will start their own cult of what about other came via patients something like a mining. those i don't know novartis is a play i'd seen that's when ethically it's a delicate question as to whom the largest gives free treatment not to use of course. the 1st 2 swiss patients are being given ki mariah for free because negotiations with health care insurers are taking so long know far to 6 planes. making. a

father of 2 children will ultimately lose the race against time nope artist's usa informs him that his cancer killing cells have not managed to multiply well enough to produce camera. 900 days later he dies. my name is paul toys and then in the pharmaceutical industry for 30 years in the last position laws us president and chief executive officer of a company i am retired now and over the last 5 years i have been the dealing with

and then cure of the cancer. so car know what it's like to show us all the medications that i have to take in a day. this being the most important long distance my anti-cancer drug. this product is to take one of these capsules for a day the cost of those a $750.00 each and entrust a millionaire if they only cost $1.00 each to manufacture what do you think about the prize the 370000 swiss francs for camera it's ridiculous car it should never happen this is a product that was developed at the expense of the us taxpayer did you have a different view when you were still a former manager than you have now on your industry. the answer is yes current and. for 2 reasons 1st i was not

a patient i've been part of the system i've been a my family's been a beneficiary of that system. i really didn't know any better at the time you know you go to work at the get a perspective which is the company perspective. what you learn as you get older is your perspective becomes much wider. than is the former c.e.o. of a company acquired by no barges in 2002 he says no participant benefited from a 50 percent discount on the cost of its trials and camera this was the us in its way of incentivizing research on a rare disease or it's people like myself who actually funded the development pro at the development program or half the development program of colorado and what we get in return is basically a punch in the teeth from the artist. created a price model for camera based on no bar to since claims that it had invested over

1000000000 euros by the time the treatment was approved. i calculated a fair price current all for $200000.00 or infusion in 2019 using the assumptions using the assumption that no forests were generated total of $1700.00 patient infusions out of 14. out of 14000 potentially. goes on we can actually drop that price it can be reduced to about half of 370000 francs the fair price is calculated in such a way that no barges achieves an average operating profit of 20.7 percent the research costs averaging at 17.3 percent are also included in this calculation the health insurer association. is also demanding a price of $200000.00 francs for. camera. of looked at the document you sammy of

the document is full of incorrect information thank you for the correct information i cannot give you that and i am up i cannot comment on it because it is not ardent da our data is not our document the criticism on the farm are not just novartis but on the pharmacy in transparency it's growing worldwide we hear it we age over here it with the health insurers with the public because the public is the payer. are you afraid that this will damage the image of nobodies. are not afraid of damage to the to novartis or you mention in transparency transparency is required across the system not just from one party our government is asking for transparency because we have a transparent list for prices i think it's the opposite. it can be discussed in a broader group i think it's a bit it's a different conversation. 71

year old court finding a bear and also has left no cancer and he says if he has the strength he goes out with his dollars because of the price dispute he has had to wait 3 months for the health insurer to decide whether to pay for camera. quite a few could you afford it if the health insurance didn't pay when he owned approach i were 100 percent sure it would work i would sell my helsel but i can tell you that if it doesn't work my wife will be left with nothing that's out of the question in my eyes that ever it is that most of us have an excuse that the company didn't pay for you or you wouldn't do it me no it's too risky stunt because the low chance of being cured you know. each year around 110 cancer patients in switzerland who have undergone all other treatments to no

avail receive camera and the 64 year old teacher unconscious or in bun maryland is one of them. it has the most interest in that the question is what is a human life worth it is to put it bluntly you are over 60 if a young person asks how much longer do you have left is it even worth it when curing your illness is a best case scenario and does it hurt to hear that kind of question. now you have it then can it be now and it so you know but i've also met young people in the hospital who are in greater need when you look at it that way. i've lived a decent life and it's been nice so far sharing see so we could tell me i almost feel ashamed even though i didn't set the price you feel very uncomfortable and so guilty but it's the only chance he has left of course you're not going to say no. do you feel guilty sure. now i really need belief not really i was in good health

for a long time and paid premiums for decades it never really needed anything that i might be matson to have to throw this came as a surprise in court. there's health insurance is also paying for humor. the price negotiations between the insurers and novartis took 4 months with the price being haggled up and down like at a bazaar. some insurers threw in the towel while others came to an agreement with novartis. insiders say insurers wanted a 45 percent discount on camera out for treating lymphatic cancer which was too much for novartis they instead agreed to a 20 to 30 percent discount to pending on coming riaa success rate meaning about 250-002-3000 extension 00 francs but no one is willing to talk about.

the agreement after all is confidential in fact it is so shrouded in secrecy that health insurers such as concordia which were not in on the deal will not even find out their discount on till they have signed the contract because from the think it's scandalous this is the 1st time i know of for us to conclude a contract where we don't even know the price that was issued that's unheard of in swiss health care with prices and contract clause as a normally transparent you can usually check what you have to pay for hospital treatment and cost transparency is very important in health care otherwise we subjugate ourselves to the big corporations. pending or has to have another cell sample taken because novartis didn't manage to produce the cancer killing cells in the us as they did for me.

in a school it's clear of course it doesn't feel good things were looking up and asked to show them that want an ob sells it's training. in the approval study for camera one 3rd of patients could not be treated at all either because the cancer killing cells couldn't be produced the patients illness. had progressed too far or they had died waiting like mikail. can't anschluss or receives good news from the us his cancer killing cells have been successfully produced and are on their way to switzerland and the cons it is in one sense and then you get back these cards here man cells cells that are even stronger than normal immune cells and soon you must pass yet many more and when immune cells get into action there are side effects last time i say sions may experience fever circulatory problems or even organ failure. in that site at best kidney failure for instance has been observed in

about 20 percent of patients once but some of the needed dialysis that dust had settled parts in. a material used as a quotation most. cancer killing cells can heal patients and kill them. so those cells are the last hope for those who would otherwise die of the disease. you know michel for jerry my name is alfred scheidegger and i'm a risk capital investor be done here in san francisco i'm attending the world's biggest health care conference. alfred scheidegger invests in small biotech companies developing new cancer drugs. have a good day about his goal is to sell most small companies to pharmaceutical

companies for a profit. so we'll. see how are you doing here they're actually doing ok where they don't play because of the start we're doing now is good the truth. mr shouting what's going on here that's a shell so it's like a marriage market it's unbelievable. if you run into all kinds of biotech companies especially own political ones fall mafia with pharmaceutical companies aiming to take over small companies later on once they've provided proof that their cancer drug is effective in humans and the like we're doing with you know much of it's you know. 60 percent of new drugs are not developed by pharmaceutical companies but by small biotech companies they need a lot of money for studies with patients and this money comes from investors like alfred schott ika and marcos horse on. china goes company often invests during the

early stages of research but the pharmaceutical industry pays the most when a biotech company is about to launch a new drug on the market participants flying the u.s. property of texas the price secondly $90000000000.00 gilliatt science is a way to buy kites farm out for almost $12000000000.00 no rochester is now demanding a record price of $2100000.00 for of access treatment the site the vicinity feels there are calculations involved that have an impact on the price tag and the fact you have to gain back your investment and of course that's part of the market price in the end isn't based on tired of souls from box ways with kim riaa no artist managed to avoid dealing with the biotech companies for investors by signing a contract directly with the university saving them billions. for patient court bending or at the hospital camera is able to be successfully

produced on the 2nd try. 3 a few 2 or 3 millimeters costs 370000 francs. does that if this is a discussion that i frankly do not want to get into now at a patient's bedside yeah i've still got a life to live. i feel like that company hit. you have high hopes it will work. awful and received his infusion 2 days earlier. that's in every data base how you doing fine. tired right i fall asleep even if i want to watch something. maclin you tell if the camera is working

and this is very safe it's too early we hope so of course but we can't tell through should. we have high expectations of course it's not all excuse me for a moment no government representative on the phone informs her of new problems with humira since it is considered a hospital treatment the cantons have to cover 55 percent of the costs. maybe a stocking doesn't know we're starting that process in parallel to buy the car because of because it's a vicious circle because the health insurance only covers the costs if the cantonal government also agrees to give its part so i can as of this act as it does allow for by you know each of them says they'll only do it if the other has already agreed in touch.

with meeting with jenny lee an investment banker from hong kong where she covers china that you know. china conducts the most trials on cancer killing cells worldwide and market observers say if the treatment is approved there it will cost about $70000.00 i tell you i did a pretty good day and i get really a bit lost i didn't get. great jenny lee says the chinese government is putting pressure on pharmaceutical companies by those that want them to have to lower their thoughts so the approach can be. marketing is there that they are there that yeah yeah yeah because you'll want new games that will be a huge volume of the plot so that it was all the oh yeah is them all them if the pharmaceutical companies read my mind those high priced really the tiniest market can all afford it the tiniest patients are our insurance is going to sell you'll be all loss loss if they. are.

also used this about profit or saving lives psalm of. 60 existence the existential justification of a private company used to generate profits so simple for you. and that comes before life. you can't really answer that question that. anton schlosser's wife documents his treatment using a cell phone. you know you said no. depressed no. in the 1st days he has fever and chills so only minor side effects. it's the same story out in socially tal with court bending or coming down with

a fever but otherwise he feels fine. so do you feel like it's doing a good. cover i can't say that we don't know yet on their. part of our heart this. somatic m.r.i. this biotech company is researching in the booming field of medicines for rare diseases referred to as orphan drugs just like a mariah when you say 3 locations. are your specifically focusing on your family is an issue yet because it's. in the us and e.u. orphan drugs receive the exclusive marketing rights with similar products from competitors excluded from approval for up to 10 years states each is sold to the

city the lore is built to incentivize research because once you obtain approval you enjoy a sort of exclusivity for several years a competitor can just launch on the market that's exclusivity told to locate the queasy excuse he did. in the us the orphan drug act was enacted almost 40 years ago today the politician who initiated it meant that some pharmaceutical companies are exploiting their monopoly to increase their profits on. the topic of orphan drugs and market exclusivity also reached switzerland a few years ago. there is also a limit ladies and gentlemen pursuant to council regulations for engaging in the debate on this topic i hereby disclose my vested interests. i am the president of

into going to the swiss association of generic drug and bio similar manufacturers. in order to promote the development of medicines for rare diseases pharmaceutical companies should enjoy market exclusivities for 10 years for orphan drugs during this period no other medicinal product should be approved for the same therapeutic indication unless it is proven to be safer or more effective albeit for me the point is the point is pharmaceutical companies are not social institutions and they only conduct research when they expect to profit from it this people hoped in order for new drugs for rare diseases to be introduced at all it takes a monopoly and this is achieved through market exclusivity we'll push the market exclusively to it because often. when sebastian trainer was voted into parliament he gave an access badge to novartis lobbyist at the time while no barters and rush donated nearly 900000 swiss francs to the middle class parties last year and that

the power to mislead fast stellan at the end of the debate it became clear to us it was not the patients who had gained anything through this revision of the law on thursday you see a product recently out on being measured caution no but instead the main changes had been about his coffers to be filled up even though no doubt heard by you tim farley throughout the commission's deliberations and still here today when i feel like i and perhaps others here to have only been aware of a fraction of all the lobbying going on here in the background of the op i wanted to distance the debate on life. costs and that had consequences. but i received a reprimand from past. then the head of novartis the. tree chief and what did he say. your head he emailed me because he wanted to meet with us and discuss our stance for methadone so he claimed we were

not being pharmaceutical friendly in the law making work that hard to be there i thought it was outrageous for him to interfere with my parliamentary work in the parliament daughter she had that ever happened before i never experienced that previously or again at lap. the debate went on for 2 years and the national council voted in favor of market exclusivity twice but the council of states opposed it the monopoly didn't pass but instead a stripped down measure protecting orphan drugs did. one month after the infusion with camera anton treuer sir is thoroughly examined. did kim riah work and has the cancer disappeared. yes now my i'm 1st going to show you the old pictures there was this lump here or

that there was the main mass in the fashion compartment. and of course on your lower leg. it's called now here's afterword with just some slight activity flower activity attached that there are still some in the fashion compartment but it's already received there's a lot of really go. through its many i couldn't have expected things to go any better you know for the hour that's the old tumor mass has completely disappeared without a trace of inflammation can you tell if he's in remission or could the cancer come back again. we don't have a crystal ball we don't know this but it's a good start actually obviously. this can you can never rule it out but with camera treatment rates with carty cells still need more data not to quote.

meanwhile at. court pending his cancer also disappeared immediately after the treatment. of course i'm glad i can get home and i'm don wearing this mosque. take care and enjoy life and use the magovern group that's the good to see of it or his doctor doesn't want to give a prognosis according to the no artist study it takes about one year to know which patients have overcome them fight a cancer for good. more than half die. and it's not yet clear how the cancer killing cells developed in the body in the long term would. in this brave new world of health care the cost of a chance at survival is exorbitant. kim riaa is just beginning.

to. watch makes a princess a kind says. let's ask ed won by a long. piece there clearly. europe's crowned ladies come and go in his press old fashion house. we were invited to look into his sewing kit is a. 30 minute song. it's

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faces date over the news live from berlin thousands of people were killed as a powerful earthquake rocks turkey and grace hundreds more are injured in buildings in the turkish city of is may crumble rescuers worked through the night to say people trapped under the rubble president i don't want promises all names necessary to help also coming up people in france mourn the victims of thursday's attack in a nation church as police say they've arrested a 3rd suspect in the stabbings. and fears of an.