And my name is michelle and munched i mean im a father of 2 children because i was diagnosed with cancer at about 3 weeks later my life looked radically different use of has never been the same so its unclear. Even 2 rounds of chemotherapy couldnt treat mikhails aggressive cancer only honk let. Me create a self if left untreated i would die in 2 or 3 months at best just so its incredibly serious clear. His my last hope is a gene therapy with cancer killing cells such as kim mariah from nova artist with a price tag of 370000 swiss francs and camera is just the beginning of a new drug looks journal was injected into it on 850000. 00 gens its now the most expensive drug on earth. For 1000000. 00 how willing are society to bear the costs of loophole going to let someone die to save money because there are power at these prices calculated to call just on the coals pharmaceutical companies sound the market to determine what can make it house of it and when the limousines actually need the full law. Would Health InsuranceCompanies Pay these record prices. 4370000 francs thats a lot of money and we cant afford it was what can you do. Its tricky its hard to tell what the future has in store. Were going to get this cancer. Out of lets hope so. Mchale dying 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 patients 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 cell. After being multiplied and frozen these 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. I mean that in a vice and i work for the insurer has done where i negotiate contracts with the pharmaceutical industry were 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 royal have and whether the cancer will return. Official and it isnt quite clear to us how the price came about we didnt receive any cost breakdown and dont know why the price is so high all day its good now is all. Welcome to Pharma Companies provide that gonski formally and there is no formula as to how the price breaks down ive never seen the mean this and i think they try to start with as high a price as possible because in the end it always gets negotiated. Still highly manoir the 1st price they set is just a starting place its off now its a real problem if you ask me i couldnt tell you what we can do about if it was in and. They discussed whether Health Insurance should pay. Only in the event of success but what is success when it comes to cancer theres no solution in sight and for the time being every insurer is deciding for themselves. Because low cost it 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 she gets in the end its like the wild west of the vehicles like that those who can afford treatment so the ones who get a chance to have it all but for others its not clear whether they can its 2 Tier Health Care yes. Mchales 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 their inheritance. So. Also you know. Im also getting an advance on an inheritance. When my brother spot their houses theyve got their share and i havent needed it so far so but soca want it now id like to use it for this and its hope. Its usually its not me hubbard i was exactly see it be 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 isnt much so. That there are a lot of people like that and it really touches around the whole who benefits because everyone realizes that in the worst Case Scenario the money will simply be going to fall and in the very worst case it wont even have done any good to fall. Back east. According to novo artis one and a half years after treatment 40 percent of patients like make. Still have cancer. Thats a start but could it be better. Those in need of course exceed what the drug im currently on had a 20 percent chance of success. In the south as a dude there were days when i thought thats it as its over. I could only hope my final hours would go quickly told us its done i didnt want my family to have to watch forever and for me to be a never ending with a work out clinic and i didnt want to lie around like a vegetable on drugs strogatz what to do and to cook amusing. 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 vargas for the fall of the or theres this level of need i thought of but thats 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. Mikhail monch times family has scraped together half a 1000000 francs he is the 1st member of a cancer patient in switzerland to receive can ryan. Good the border. Mikhail has a taken from him that will be shipped by plane to the us where they will be converted into cancer killing cells referred to as car t. Cells. Will the treatment work mikaelas cancer is growing so every day counts. Instead of the end of 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 took the high concept of that im called to. Go ahead to ensure the funds are available to go come to ny about as prepared to issue a Bank Guarantee that i and we are supposed to deposit everything into a special escrow account that beck fears dan c. Will make sure its not touched but this way we can proceed with treatment by their father murphy earlier lymph nodes it. Was. Moved through Clinical Trials funded by novara case. Good to see 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 the former period was less than 2 years and can royal was not compared to an existing treatment so the long term effects remain unknown this criticism generally holds true for other trials on Rare 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 its 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 isnt that crazy. Wow well by all means i will say yes but were also talking about patients who would otherwise die along with all their can comets and diseases thats. Thats our world has gotten impatient and our patients have to were not just going to say to them lets wait 5 years and all thats the problem its walking a muffin if you have a. Brain. The trial with these deaths didnt concern no parties which conducted follow up studies on safety and efficacy. But what do you say about no vargass price as it was our sit in prices i find the prices in general to be staggering in many areas and not just those of. You in the eye or now these prices are completely nontransparent to patients and to us doctors or mr someone enabling all. All of this to go on because there are vested interests and mine so there are reasons why they want to be on the companys good solid dismissed him to interestingly to whom theyre stacking the hormones if not then failing which then measure their wives stand off because they could also produce in india or china you know. So it means jobs in basel albats thats and its the jobs of course and if you look at switzerland for example it doesnt have much industry but it does boast a few of the worlds most important pharmaceutical companies at least if 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. There. This will be a key site for us. They avoid talking about numbers here but can swiss patients expect a price discount if the transport costs to the u. S. Are eliminated. No says mr austin e. Because the production side doesnt 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 youre not afraid that the Health Care System could break if you continue like this. No im not afraid i think we can find the solutions we are open to take the resources the kinds were open to take risks with with our stakeholders to make sure that we can bring the therapies that 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 us not stemming from pharmaceutical companies that. Are an army professor at the university of pennsylvania marching name invented. In 2465 years old but ive been working on the. 992. Carl june was named one of the worlds 100 most influential people by Time Magazine in 2018 the 1st actually test of this is in patients or at a charity infection because they have lost 2 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 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 its ok what we know for sure is that the. Funday essential oil was essential to make a new industry so to have philanthropy the Government Support it was millions there was millions it was probably 20000000. 00 i mean. I think for sure 20000000. 00 were invested between when i came to university of pennsylvania in 1999 until nov artists at the alliance were made in 2012 but the riskiest part was state by the government yes all the initial research that showed this new concept of our car t. Cells could work was the Academic Laboratory is. In 22 and came the breakthrough in the cancer patient douglas on sunday however it was the news of 7 year old Emily Whitehead that spread around the world thank you mariah saved the young leukemia patients mind 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 wanting to start new companies and fortunately had novartis 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 pay the university of about 225000000 for the exclusive right to sell q riaa 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 its 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 thats. Cost per patient and with no profit. So the actual cost is almost 7. 00 times cheaper 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. Mikail mon shine 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. Was the most amount of all the scenes were filled with joy im very relieved to be. I mean you always a lot of money at stake and also of azza will start their own cult of what about other key maya patients standing looking like. Those i dont know novartis is a player and thats when ethically its a delicate question as to whom the largest gives free treatment he ought not to use of course. The 1st 2 swiss patients are being given team mariah for free because negotiations with Health Care Insurers are taking so long know far to 6 planes. Mikail moonshine a father of 2 children will all to lose the race against time no hartis usa informs him that his cancer killing cells have not managed to multiply well enough to produce a camera. 900 days later he dies. My name is paul cloyd can and then in the pharmaceutical industry for 30 years in the last position was a us president and chief executive officer of a company i am retired now and over the last 5 years i have been dealing with and then curable cancer. So car know what its like to show us all the medications that i have to take in a day. This being the most important one just as my anticancer drug. This product is to take one of these capsules for a day the cost of those a 750. 00 each and entrance to millionaire if they only cost 1. 00 each to manufacture what do you think about the price of 370000 swiss francs for a camera thats 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 then you have now on your industry. The answer is. Yes current and. For 2 reasons 1st i was not a patient ive been part of the system ive been a my familys been a beneficiary of that system. I really didnt know any better at the time you know you go to work at the get a perspective which is the Company Perspective and what you learn as you get older is your perspective combs much wider. Than is the former c. E. O. Of a Company Acquired by no bar to see in 2002 he says no participants are benefited from a 50 Percent Discount on the cost of its trials and camera this was the us is way of incentivising research on a Rare Diseases its people like myself who actually have funded the Development ProgramDevelopment Program or half the Development Program of come right out and what we get in return is basically a punch in the teeth from the artists. Create a price model for camera based on no participants claims that it had invested over 1000000000 euros by the time the treatment was approved. I calculated a fair price current of 200000. 00 per infusion in 2019 using the assumptions using. No forests were generated total of 1700. 00 patients and fusions out of 14. To 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 had chiefs 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 societe. Theres also demanding a price of 200000. 00 francs for camera. Looked at the document you sammy 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 dhar data it is not our document it criticism on the farm are not just not artists but on the farmers in transparency its growing worldwide we hear it we age old be hear 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 term of art is 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 its the opposite. It can be discussed in a Broader Group i think its a bit its a different conversation. 71 year old court ending there and also has left no cancer and he says if he has the strength he goes out with his dogs 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 didnt pay when he owned approach i were 100 percent sure it would work i would sell my house but i cant i think that if it doesnt work my wife will be left with nothing thats out of the question in my eyes that ever it is that must also mannix if the company didnt pay for you or you wouldnt do it me no its too risky scone because the low chance of being cured has. 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. If you die has. T