Why is nobody talking about the real problem? The pharmaceutical industry doesn't use the money to research. They spend most of their money lobbying governments and paying off politicians.
Alexion only produces one main product which is Solairis. This company is the only in the world that specializes in making this drug and has only 2,700 users around the world. They have the market cornered and thanks to no other pharma companies wanted to do RnD for a drug that is only used by 2,700 people. Also, this drug isnt exactly easy to produce, its a humanized mouse antibody not some chemical reactions.
Tony Meadows boo hoo, looks like we are all slaves to Capitalism. Yes, it's crude and questionable in terms of ethics but the illusion of privilege and free will is our gift. Greed is what drives us to do the worst things, yet it is the catalyst for the greatest advances in the human era.
The cost of Solaris is roughly 1% of what they charge. This cost is similar to the markup by homeopaths. It usually takes 5-7 years to develop a drug. A pharmaceutical company can have maybe 10-50 of these projects going at any time. Maybe only 1-3 actually make it to market. There's a huge investment by these companies into each drug - and that's what the end consumer pays for. However, if the governments say "no we wont pay that", they have no other customers. See monopoly works the other way too, if all the consumers says "nope", they will have to lower the prices.
rdsii64 That comment has nothing to do with this. Ofc a parent wouldnt say no to this, but again, it was the price and monopoly that was discussed here. Not whether we say yes or no to give this to our children.
Because we are afraid of communism. History has proven multiple times that communism is a system that does not work. It is a system that leads to the suffering of the average citizen until the system is torn down. Sure you can say that communism is a perfect system by design. But then you are forgetting that the system has to be run by people. People are imperfect.
RxMillions How could the price go 10 times higher, when it is already close to 200 times over the production cost? This makes no sense at all, the little amount needed, could even be produced in the lab of a public university.
Rag man That's a wrong way to think. It's not a 500K product. It's not gold that they're injecting while other people use a 20 dollars vaccination every half year. The pharmacy can ask ridiculous amounts of money for this product because they regulate everything. This product is maybe worth 200 dollars a year if they didn't have the monopoly. This is not only for those individuals, this is a statement.
Rag man As a patient with aHUS on this medication, I really don't know how to respond to that...I don't think my life is more worth saving that others, but then again, my life is everything to me but I don't make 500k a year. I don't know what else to do when I just want to live without fear of dying.
GamerDerp the U. S got 1.1 trillion dollars in2016… 56% of that went into the military… which is 556million… 1million… is nothing to them… now, compared to the 2.3 million that education system got and science… yeah… a million isn't s lot
yyangcn it reminds me of iron fist… $5 to make a drug… and they wantes to tell it at $500 a pop… and in arrow where here was a strand of hepititis that a company created so they call sell a cure… started at $20 a pill… and ended up 20k a pill over night (his words) the goverment is money hungry mongers… eventually most of it (not even kidding more then half) goes to the military… for, just, better weapons
Laitas Y And then get completely destroyed by a patent lawsuit, fined more than you could have made in your entire lifetime, then put in jail. And no, you really couldn't have just 'reverse engineered' this and been successful.
From someone with an illness, it's a very real question - it's just hard to put it into words that someone with no idea would understand. Try describing a colour to someone whose never seen before.
in India we have a strong policy that pharmaceutical companies keep fair prices.. if not then patent infringement cases are not entertained... and American government wants us to change this policy... huh
It’s because your countries rips off our medical research which allows them to keep it cheap. It’s expensive in America because we invent all the drugs
I am a patient on this medication, and it's impossible to describe the complicated feelings I have toward Alexion in a few words. But the strongest emotion I will forever remember until end of my time, is the despair and hopelessness I felt when my very own life slipping away from my body in the hospital dialysis room. It's something that still haunts me about just how fragile everything is, even after I more or less became "normal" again.
In order to keep a child using Soliris living for the rest of an "Average natural life" it would cost around $52,000,000, Wrap your head around the price. It's truly sad and unfair, maybe creating a company whose profits go toward victims, would be a more effective approach, helping people who suffer from the disease and creating jobs.
Shame on them, I had a son that died from muscular dystrophy in 2009. My son was 19 years old and was in pain all of his life. I now wonder after all the money spent that if and when they find a shot for what took his life , will others be able to get it. I now have no pituitary gland and need to take meds just to stay alive. It costs me over 700 a month just to stay alive. Even that much is too much but I am thankful that we have drugs for that at least.
No Pituitary and a poor working Hypothalamus I don't like getting emotional, but I truly hope that everything will turn out great. Wish you so much luck!
Al Mahdi no one has to pay that, the insurance companies are basically morally compelled to pay for it as so few people need to drug. The reason it costs so much is that if the sold it for less the company would go bankrupt and not be able to provide the drug anymore as the R and D cost for a single drug is so high (billions of dollars).
Actually the cost to produce it is in the single digits. What costs money is the amount they have to pay to have a monopoly on its production. Like epipens. 4000% profit.
GamerDerp Watch again. Production costs are only a fraction of the price. Research is mostly done by universities (aka public money). So the company has a ridiculous profit margin.
Nyx Reaper pharmaceutical companies spend millions of dollars to develop drugs like this the start-up cost is so high and there are so few patients that have to charge a ridiculous amount drugs for more common diseases can be cheaper because they're more people buying them thus allowing them to make back their money easier
How about we have a government board decide what a reasonable price is. If the company refuses then the government can just nullify their patent and the generic companies can take over.
Well except how most medical research is done by publicly funded universities. And nobody is saying don't allow these companies to profit off of their work. Just don't allow exorbitant profits at the expense of the public good. There are also middle grounds where the government could force the company to license their patent to generic manufacturers at a reasonable rate. The patent and copyright systems are really broken and both need to be seriously curtailed for the public good.
This perfectly illustrates why I'm not libertarian anymore: most corporations have absolutely no conscience and will do anything to make more money. The people in those companies should be ashamed of themselves.
Almost no drug companies spend money researching and developing new drugs for ultra-rare diseases. Alexion is one of the few, you have to realize how much it costs to develop these drugs, and that it is absolutely necessary for them to earn enough money to fund future research and development.
I completely understand that, but the problem is that Alexion refuses to disclose the costs that went into making this drug (plus R&D of failed drugs). This indicates they are just trying to squeeze as much profit from it as they can. Drug companies can still overcharge, so governments have the right to know if they're paying a reasonable price or if Alexion is just exploiting its monopoly. Instead of disclosing their profit margins, they choose to manipulate the public with emotional videos, which is a red flag of malicious intent.
Robert De Groot The drug is their invention. They can do with it as they please, including never disclosing it to the public or offering it for sale, or even taking it to the grave. They chose to disclose the invention to the public through obtaining a patent. "A patent is a government-granted monopoly on an invention to an inventor or their assignee for a limited period of time in exchange for a public disclosure of an invention." They could have easily not invented the drug in the first place.
Medical patents should demand that they sell it at a reasonable price, and the transparency to determine such, or they lose the patent. We're playing with peoples lives here.
Well, in cases like that the only argument is the libertarian: if the company doesn't have the monopoly on the drug, other companies would make it much less expensive. The companies made this kinda scheme because they know the government will pay for treatment of sick children. Is using emotional propaganda to make money with public resources. Is against all the libertarian philosophy
So this company is helping people force the government to pay the company....The company goes through lengths to get their money. Lower the cost of the drug and you wouldn't have to jump through all these hoops just to get paid. It doesn't cost 7k$ just to make one bottle.
In Denmark people are being denied treatment for deadly illnesses that would cost a one time payment of approx. 100.000 $ (US). I would say more but right now I just feel so tired and drained because it's like shouting in the wind. To the rest of the world Denmark is "The Happiest Country in the World" (an outright lie for reasons I'll not get into here) and they (Denmark) is so good at flying below the radar, when all the countries around Denmark get called out Denmark itself remains unchallenged. I want to say more, but I need to find a way to do it so that it matters, so it makes a difference... some difference, even the slightest difference than this wall o silence that has been build up around and inside this country.
Denmark, Norway, Sweden, Finland, are all going bankrupt as their socialist society cannot be supported by their economy. If a country wants to grow and be a world player it must be progressive. Heck even Denmark doesnt have to pay for a military as its covered by the USA and EU.
I like how they never actually get into what the company says about the production cost of the drug. They just find some schlep to make a wild guess about what it might cost. Going by what was said I can infer that the drug is comprised of a synthetic antibody. In which case the R&D costs would be astronomical for such a small number of patients.
***** You can't really be that dense. Don't you understand anything about economics? How many man-years were invested in researching that drug? You do all that research and find that you have a marketing potential of a few dozen patients. They need to charge a lot to recoup their costs or drug research turns into a big money pit. Everyone always criticizes drug companies for not researching rare diseases. This is the reason that they don't research rare diseases.
***** How do you gleam one's employment from a troll comment on youtube? I don't work for Alexion. Soliris was originally designed for a target patient population of more than 1 million people. The company is pricing the drug as is to make up for the loss for its investors. Also how do you know how much R&D costs were? Financials don't contain line item analysis. Production of monoclonal antibody treatments is cheap. Once the hybridoma is selected and cultured, the cells just need to be kept alive to produce antibodies. The high cost comes in from research into targeting and identifying the necessary antibody. It can take years of labor by highly paid researchers.
***** 1st I never said it was priced at cost. I said its high cost was due to exorbitant R&D costs for a small target patient population. Oh, so you're a lawyer. That makes since about why you are so pissed off. You must be jealous that someone else is screwing people over. 2 Soliris isn't the only product of Alexion and they have 40 programs in operation. Not only do their patients have to pay for Soliris R&D but they have to pay for the other programs. Not all of those programs will result in marketable drugs. The company will have to eat the costs of the failed programs. Soliris was actually a failed program. It was originally intended to treat RA. 3rd Which is it? Do I work for Alexion or not? I don't know how many man-years were invested in Soliris and the company isn't going to publish that information. What I can tell you that the process of identifying a therapeutic antibody and producing a targeted hybridoma are extremely time consuming.
***** Funny how the class action suit presumes that Alexion isn't as profitable as you are making it out to be. R&D costs are always spread out to drug costs. Quite a few of those are trials to find alternative uses for Soliris. If they are approved for more uses then the price for Soliris will drop. I don't know where you are getting the idea of massive profits. They are turning an average of 25-30% profit over expenditures. A few lemons, inevitable liabilities, or inflated operating costs could easily turn their books red. Their pricing has to account for a war chest to ensure the viability of the company while providing their investors a return on their investment. Simply growing appropriate tumors on the mice for the monoclonal antibody would take months. Succeeding in creating the proper hybridoma would take more months. Creating a stable culture from those cells would take more time still. The process isn't anything even close to 100% efficient, more like 1%. That isn't even accounting for the research identifying the target antibody which would take an indeterminate period of time.
Now my husband is in hospital. He was diagnosed with Neuromyelitis Optica, a rare autoimmune disease similar to MS. Whithin 2 weeks he went from a healthy, active, gym-loving man to a wheelchair-bound partly paralyzed man in need for diapers and catheters. This treatment could save his life and save him from going blind, paralyzed etc. Although he's spent all of is life paying lots of money for health insurance it's probably not going to be paid for. And we live in Switzerland - one of the richest countries in the world.
The fact is that it and many other drugs is unbelievable overpriced, many say the companies need to get the money back they used for doing the research but it does not excuse the fact that pharmaceutical companies is greedy as hell ... This is why things like this should really be done non profit / government and not be put in the hands of greedy corporates.
This shows what we need to do. There needs to be a "healthcare PUCO" of sorts to ensure companies don't price gouge for life-saving medications. Unfortunately, however, the government paying for this sort of thing is not practical.
The government has a duty to pay for it. I pay taxes to keep my fellow citizens alive. If the government doesn't do that with my taxes, what is the point of having taxes?
This is a map of countries with free healthcare. Notice that the countries without free health care are poor third world countries and America. upload.wikimedia.org/wikipedia/commons/2/25/Universal_health_care.svg
I wish the best to anybody suffering with an illness and their families. This world is disgusting in it's greed and filth , medicine should be free especially for people that don't have a sufficient income .
Why did you buy a pharmaceutical business and did you see how it works? Do United States is the most powerful country in the world we have third will country's out there they provide free healthcare for the citizens and once again the most powerful country in the world the world power will not provide decent healthcare for the citizens and yes I believe that the ones that are better off financially should help the ones that are not.they take our money in taxes anyway and spend it on countless military weapons in secret Geo engineering programs but they cannot provide healthcare for the citizens it's because they don't care do you care
David Caruso In the UK anyway many people have private healthcare as it's so much better than the NHS and it's affordable, the NHS is barely sustainable at the moment...
The drug company charges as much money as they can get. Because there are so few patients in this case, they can use media campaigns to force governments to pay huge sums of money for a photogenic patient, because a nation-state can afford the cost. This drug is a monoclonal antibody, which is not that easy to make. Most drugs are small molecules, and can be easily synthesized in any decent lab. If a government wants to, it can simply say "we don't recognize your patent" and make the drug for pennies in their own lab. This has happened with at least one Aids drug, perhaps others. Anyone can do this. All you have to do is find a lab that will make a drug for you. There are lots of labs in the world that do synthesis for hire.
The best and cheapest medical treatment ive gotten was in Malaysia. It costs around 1 usd to visit a public hospital for a foreigner. A private clinic will cost you around 10 usd in Muar, Malaysia with the medicine. The government subsidies the doctors so they earn around 40k USD a year which is more then enough to live high on the hog in Malaysia
The cost of a drug isn't just the cost of production. It also covers the cost of research, not only to make the drug, but also failed drugs. Most expensive drugs are for very rare conditions. This is because the cost of research can be divided up between a lot of drug sales with common illnesses, but very few sales for people with very rare illnesses. So the governments can afford these treatments, because they only need to pay for these expensive treatments for very few people. Yes drug companies make money, that is because they are companies and not charities or branches of government. And I want companies to see they can make a lot of money on very rare illnesses, so they will develop drugs for more illnesses knowing they will make money out.
(This post might seem strange, that is because what I was replying to has been deleted) I did not say drug companies do not make a lot of profit on rare drugs. I don't know whether they do or they don't. What I do know is there are a lot of rare conditions that are untreatable now because their rarity means drug companies do not see it as profitable enough to develop a treatment for them. I want to see drugs for rare illnesses priced high enough for drug companies to invest in them. When it comes to parents pushing states to buy these rare drugs using emotion. I believe it is a good thing. If that is what it takes to save their child's life, that is a good thing. Especially in cases where a country that refuses to fund it is as wealthy or wealthier than countries that do fund it. You might argue that they should cry to the drug companies to give them the drug for free. But they pay their taxes to the state, not a drug company. Drug companies are there to make as much profit as they can because their duty is to their shareholders. The duty of a state is to its citizens, and their is no greater duty the state has than to safeguard the lives of their citizens. When it comes to how much a government should spend on a drug to save someones life, the question you are asking is, how much is a life worth? How much is the life of someone else's child worth to you and the taxes you pay? More or less than the price of your own child? But remember however expensive the most expensive drugs for the rarest illnesses are, it will have no effect on your taxes or your countries health budget. This is because the conditions are so rare, the government will have to provide the drug to such few people it wont cost that much compared to everything else money is spent on. When it comes to disreputable drug companies making huge profits. The place to look for this are the drugs where they make huge profits. These are common drugs which might not have headline grabbing prices, but when multiplied by the large fraction of a state's population that uses them, they reducing the price by a small fraction is enough to make large savings on the health budget and your taxes. Savings can be made on drugs and treatments that do not work, but politicians have been bribed by drug companies to purchase it. And libel laws are used to silence medics and scientists who try to reveal the fact that they do not work and are a waste of money. Even in cases where these drugs are very cheap, they are provided to such large numbers of people that real savings can be made by reducing this waste. These useless treatments include new ones developed by large companies, alternative therapies that have no scientific bases and even superstitious faith healing. If money needs to be saved the place to look for the saving is where money is wasted however little and not where money saves lives however much.
Yeah, but on top of that every other country in the world but the US is not forced to absorb those costs in the same way. There's actually a ban on importing drugs sold at much cheaper prices elsewhere. The US gov has made a conscious decision to let pharma companies price gouge americans and americans only.
America is the only developed country without free healthcare. It doesn't mean you pay less tax than us. It means the opposite. You pay three times as much in tax for healthcare than us. This is because your hospitals are companies out to make money. In other countries the government negotiates a price with the drug companies for enough drugs for the entire country. So they are able to get very good deals. Yours individual hospitals buy drugs for individual patients and then bill the insurance company or your government for the drug plus their profit. So you pay a lot in taxes for those drugs for the same reason you pay $100 for a pair of shoes if you buy it yourself from a shop, but a company would pay $20 each for the same pair if they ordered a thousand pairs from the same factory yours were made in. Yes you pay a lot for your treatments and in taxes, but the fault isn't with drug companies for making money. It is their job to make money. The fault is with the very unusual health care system you have in America, which is designed to make money instead of treating people.
Saam Amerat - Since you are such a professional when it comes to the American Health care system, please explain the ACA, and why my health insurance premiums went up over 600%.... Don't worry, I'll wait.
If you watched the whole video, you'll see that this is the company's only drug, so in this case that argument falls flat (unless you are suggesting they are working on their second drug, spending most of the profits on that research).
If it's so rare that very few people have it, the drug shouldn't be the most expensive drug in the world because they don't have to produce that much of it. What they really should be doing is forcing the pharmaceutical company to lower the price of the drug.
How many of you here commenting actually has one of these two diseases, or know someone personally that does. I am actually a patient with aHUS and on this medication. The story is so much more complicated than this 18 min video can possibly cover.
Me!!!! I was diagnosed with aHUS in 2016. I received Soliris infusions for the first 4 years (until the new drug Ultomiris came out). I've been on the new drug for the past 2 years.
Everyone knows that the fewer people effected by a drug the more they'll charge for it. Partially because it's a low production drug and partially because if a few people's prescription costs cover the cost of R&D for a more mass product drug at a lower price it's a worthwhile trade-off.
It's all sweet and dandy, but how many starving orphans in Africa or wherever we can keep alive for $500 000 a year?That's about 5 BILLION pounds of wheat. EVERY YEAR. Why life of one person should be worth that much to people who don't even know the person
I can agree with the fact that the government wouldn't want to pay for the meds because paying for their bills will only prolong the children's life for a period of time, it will not stop the children's pain for good so why not use that money on research or for people that has a chance to be cured
12:25 reveals the fleecing. Anyone with any chemistry background understand making various mixtures isn't that expensive to manufacture... we do live in the industrial era. Otherwise insulin would be hyper expensive with its drawn processes which include growing and harvesting yeast producing insulin then refining the insulin. It's super cheap. It's artificial monopolies, and allowing no competition even with generic producers in an inelastic demand curve (people will pay any price to stay alive and/or avoid misery). So have governments produce these medicines to compete. Only reason profit motive exists is due to the effects of competition that usually leads to more suppliers (more supply), better quality, new innovation, etc. When competitive markets are violated severely like in medical sector, you must reach to a collective method for competition.
12:30 Yes the manufacturing cost is less than the end price, but you have to add in the cost of patient trials, and the cost to apply to common drug reviews both federally and provincially, which is hundreds of thousands of dollars per submission. Those are "fixed" costs by economic terms, and the reason why the drug companies hold patents. Once those fixed costs have been reconciled the price better reflects the variable cost of manufacturing.
Well, that s all nice and true but why wont the company disclose this costing to show the real cost so that governments can make proper decisions, I.e. not emotional or based on populous emotions that swing votes? But then I understand the private sector going for as much as it can. After all, a corporations duty is toward its shareholders, not tne taxpayer. Perhaps regulations should be enacted to curb that innate trait of human nature: avarice!
They don't provide it to the government, but they do provide a cost assessment to the Canadian Agency of Drugs and Technology in Health, (CADTH) which is the independent review board that determines whether or not a drug will be recommended to the provinces for coverage under their health plans. Here's where it gets interesting. I have a rare disease and contacted my extended health insurer, the Premier, Health Minister, Deputy Health Minister, and all the pharmaceuticals that produce my drug. They all said it rested in the hands of CADTH. Another patient who volunteered to provide her contact info to a pharmaceutical got in contact with via the pharmaceutical. Under Canadian privacy laws patient information can not be given to third parties, unlike the US. This is where the video is a little off, because there are so few of us, and we can't find out who each other are it makes it very hard to form a patient group. CADTH only would take patient group submissions until Feb 2014 when the other patient and myself decided to submit patient input individually for a competing drug we were taking. The company had contacted her specialist who then told us the drug was under review. Our submissions resulted in CADTH doing a pilot study on how orphan drugs are reviewed. I managed to get my extended heath insurer to cover my medication, but I am one of the lucky few. If there is only one thing I ask of people reading this, PLEASE contact CADTH, and stress the importance of their continuation in examining how orphan drugs are reviewed. Also there is a list of all the drugs that have been reviewed by the agency. Take some time to read them, as the reports are quite interesting.
Thank you very much for that insight. I will have a look at CADTH and its reviewing process and perhaps provide comment. It would not be a bad idea to have disclosure of cost to manufacture the drug, or as a more drastic measure, shorten to 7 years the patent protection on the medication.
Jean-Jacques Desgranges It's a shame Canada has fallen back on it's R&D in health care. Much is done in Europe these days, which doesn't help the situation...small population, large geography in this nation of ours adding it's own coefficient to the equation.
The FDA should remove regulations and barriers to entry for generic drugs. Doing so will encourage other companies to invest in developing similar drugs. This will drastically lower the prices.
just to give some context to pharmaceutical products. first of all patents, drugs are patented for 25 year in europe at least, generally the company will patente the drug very early in the devellopement if the drug has any potential, this is done to avoid loosing the patente if an other company have the same idea. to be fit for human consumption the drug along with dozens of similar has to go throught a 15 year process identifying the ideal and safest drug for consumers (clinical trials). this leaves 10 years for the company to make a profite of the drug before the patent comes to the public domain. on top of that that drug is tested with hundreds if not thousand of other potential drugs in this process until the final drug is selected. with the small number of patients the price of such a drug will be extremly expensive because the R&D cost a lot.
I think people missed the part where it was revealed that 80-90% of the R&D was funded by public money in mainly university studies. They don't make any other drugs because they don't do R&D, they made a patent out of a drug almost completed. They've made 6 billion dollars in 8 years already, that's more than enough for a drug that costs $60 to produce.
This is just how things are at this point and time with this drug. I know some patients don't have time but in time a new drug will be created that does the same thing especially if it's so profitable. Then the drug companies will compete for the market and prices will go down. The real problem right now is there is no real alternatives medicine.
Philip Phil That's bang on point. Look at Somatropin, there are 8 different companies that produce it and the amount of patients who need it aren't great in number. It's a highly competitive market with few clients. After a period of time the patent license expires and competing companies can enter the market. If the issue is the patent law, it still comes down to the government.
Philip Phil I'm not certain your faith in the "invisible hand" of the market is founded, and I'm not sure that should be a consideration when we're talking about saving human lives. Profit should be secondary to people when lives are on the line.
A drug takes at least 10 years of research before they come out. and in case of soliris it took more. starting from concept of machenism, research into the disease, research into the interaction between drug and the disease as well as normal human physiology, to screen any foreseeable adverse reaction (so-called "side effects"). then trial in vitro (lab, tissue culture, test tubes etc.) then in vivo (animal models) which in the case of PNH I imagine is hard to stimulate in lap rats, to be able to see the effects of the drug in live animal as well as to monitor for unforeseen adverse reactions. then the real test begins in human trial, this will make or break the drug, then on to clinical trial. And you can imagine the process and the COST of all this: thie lab equipment, salary for scientists and researchers ( which more than most ,i can say ,is very sincere about helping fellow human beings), money for trial subjects, the sheer man and brain power which goes into this kind of thing. OF COURSE companies are doing this for profit, they risked being sued and they spend a lot of money on this. And they must make fast profit bc copy rights do have an expiration date, and especially for rare diseases (less prople would buy it) they have to do their best ot exert their profit. im not saying that Drug companies are all flowers and sunshine but its just the way the world (and capitalism) is. im not saying that the world cannot be changed, it can be, just not by killing CEOs.
Napon Y. The guy who owns a small pharma company said that in the case of soliris the vast majority of the research was government funded at universities.
well this is an information i didnt know, thank you. tbh i didnt event finish the video. but if what youre saying is true, then i dont know what to feel. smh
It could work, many university researchers have the skill, the difficulty is avoiding being caught. What we really need is a country to decide not to uphold patent laws. Then there could be an offshore medical treatment haven.
end my life I probably dont know lol just throwing out some ideas out there and there may be people already selling knockoffs of this drug already due to its price and demand for it. Just a thought.
I am not a fan of government intervention but in this case there ought to be legal means used to keep companies like this from profiting at this level. When most R&D was done with public money, that justifies the fairness of the limitation. Perhaps drastically limiting the patent time or not allowing full patent protections at all. Once generics enter the market prices drop sharply.
There needs to be a margin limit on these drugs....Only allow them to mark up so much. The same way gas stations can only charge so much for gas or for cigarettes.
Yes, Aidan. But nothing is free. Yet, people insist it is. It's taxpayer funded healthcare, not free healthcare. That 82 million bill is footed by everyone. I don't have to lecture a British citizen about the long term financially viability of the NHS, I know it's a major issue. Assuming 1 in a million have it, there are probably 50-60 British citizens that require it.
I'm all for science & the advances it has made too just about every aspect of life but I've often wondered what affect this will have on the human race... We have more or less ruined natural selection, the strong are no longer alone in their survival. Is this a good thing or a bad thing?? Btw I'm not a "pro-eugenic" person though I do see the science behind it.
I ask your pardon if some of what I say comes off strange I'm on a few different medicines right now. I myself have Atypical HUS and I have a family and a son who I love very very much who'd miss his momma. I am in the hospital now fighting this disease AGAIN hoping I can get Soliris. I don't believe natural selection revolves around the ones that have health problems but the ones who do dumb things and dumb down the world. A king can have cancer or any other disease or disorder. that's not what defines him. What defines him is how he ruled, what he taught his people, and etc. Besides who are you or anyone else to put a price on my life?? Js, man.
TheWebCritic What about those very same tribes finally finding out how horrible slavery was and fighting back against the europeans to end transatlantic slavery
unfortunately there are a million sad stories to be heard, from every walk of life but decisions cannot be made purely from emotion. They must be made out of emotion AND logic . when government pays for anything, it is the taxpayers paying for it . and when you're dealing with other peoples money ,logic and fairness is what should be used not emotion, you can use emotion when using your own money , and just to be clear (tax money = other peoples time and labor)
Soliris will eventually come off patent, so what the patients need is a way to get help and bridge the costs until a generic equivalent becomes available. How to pay for the life saving drugs are a really hard question. Each person wants the very best medicine for themselves or their children, regardless of cost. The government must figure out how it can do the greatest good for the greatest number of people on a fixed budget.
Alexion just made their headquarters in my home town last year and already has layed off 210 employees that's 7% of their workforce in less than a year. They're stocks are still on the positive side but let's see how long that will last.
it is simple. if a drug company cant extort society to pay because of regulatory backlash, then they simply not develop drugs with the potential of backlash, which means no drugs for rare life afflicting diseases.
Prices of drugs that treat any rare disease is expensive. Essentially, the development and marketing costs of most drugs is more or less the same. The only variable is how many people they can sell it to. A drug only 1 out of 1 million people need = expensive A drug 10% of the population needs regularly = cheap This is why health care should be entirely not-for-profit. Too many people are out to make money off of other people's misfortune.
54k a month. This is absolutely a money grab for drug companies. There is no chemical that costs this much nor the scientists labour who came up with the composition. Unethical, unprofessional, inhumane un- medicinal field that should be public safety and health priority. This is blatantly pure greed!
How to keep medical costs at their real prizes: 1. Every country should decide together how much they are willing to pay to pharmaceutical companies. 2. The prizes are decided based on how much publicly funded research has been spent on them and also the manufacturing prizes. The prizes must be very realistically estimated. 3. Only one offer is made and if the company isn't willing to agree on that, it's not going to happen.
How much does it cost to treat one of the patients if they don't have the drug? That seems to be a factor in their calculations. If that child was in the hospital for over a month not even getting well, as first example, that adds up in cost. Give the child the drug and they are not needing all the expensive medical treatment. So their competition isn't other drugs, but it is the cost of regular medical treatments like going into a hospital or going on dialysis. -- We may see this same thing with last resort antibiotics to drug resistant bacteria.
in the defense industry the government sets the max profit a company can make on anything designed for the government. They should set a similar law for any pharmaceutical drug that uses any publicly funded research.
I find it interesting how this problem is mainly being noticed in Canada... oh wait dont they have "free" healthcare? I wonder why they're struggling to pay.. I wonder where the money comes from..
Sooner or later, the drug will become generic and the price will come way down. I wouldn’t doubt that it’s already available in places like India as a generic.
when a company is making profits in the billions, theres no excuse as to why anyone in the world cant have the drug at a discounted rate. Ethical standards and laws need to be forcibly enacted internationally in order to pressure pharmaceutical companies to disclose costs and enable transparency! But itl never happen and they know it.
Why is nobody talking about the real problem? The pharmaceutical industry doesn't use the money to research. They spend most of their money lobbying governments and paying off politicians.
Tony Meadows very good point.
Tony Meadows very good point.
Alexion only produces one main product which is Solairis. This company is the only in the world that specializes in making this drug and has only 2,700 users around the world. They have the market cornered and thanks to no other pharma companies wanted to do RnD for a drug that is only used by 2,700 people. Also, this drug isnt exactly easy to produce, its a humanized mouse antibody not some chemical reactions.
Tony Meadows boo hoo, looks like we are all slaves to Capitalism. Yes, it's crude and questionable in terms of ethics but the illusion of privilege and free will is our gift. Greed is what drives us to do the worst things, yet it is the catalyst for the greatest advances in the human era.
Its calling reinvesting revenues into future profit generating activities, also known as R&D. All company's must do this to survive.
$1.25 a minute
Mike Rivest You sir made my day..
Does it actually take that much to produce the drug? or is it just a monopoly?
***** per ounce? gram?
Its only monopoly. Wich it has been for more than 3 decades for prescription drugs and non prescription drugs.
The cost of Solaris is roughly 1% of what they charge. This cost is similar to the markup by homeopaths.
It usually takes 5-7 years to develop a drug. A pharmaceutical company can have maybe 10-50 of these projects going at any time. Maybe only 1-3 actually make it to market. There's a huge investment by these companies into each drug - and that's what the end consumer pays for.
However, if the governments say "no we wont pay that", they have no other customers. See monopoly works the other way too, if all the consumers says "nope", they will have to lower the prices.
I get what you are saying. With that said when your child needs this drug, lets see you say no.
rdsii64 That comment has nothing to do with this. Ofc a parent wouldnt say no to this, but again, it was the price and monopoly that was discussed here. Not whether we say yes or no to give this to our children.
If government is getting ripped off of money from corparation. Then the gov should fund its own programs and actually compete with these corperations.
The government does the initial research.
Marley Bob YES
not really socialist...only partially socialist.
Because we are afraid of communism. History has proven multiple times that communism is a system that does not work. It is a system that leads to the suffering of the average citizen until the system is torn down. Sure you can say that communism is a perfect system by design. But then you are forgetting that the system has to be run by people. People are imperfect.
RxMillions
How could the price go 10 times higher, when it is already close to 200 times over the production cost?
This makes no sense at all, the little amount needed, could even be produced in the lab of a public university.
half a million a year!? in two years that's as much as some people make in 40 years!
If you're an adult with a yearly income of 25k you shouldn't be having kids in the first place
Alex T Isn't that like 2.000 a month? People wish to have a salary like this in my country.
Half a million dollars a year could save so many more lives than just one.
Rag man I know right. Don't let the goverment pay for it
Rag man That's a wrong way to think. It's not a 500K product. It's not gold that they're injecting while other people use a 20 dollars vaccination every half year. The pharmacy can ask ridiculous amounts of money for this product because they regulate everything. This product is maybe worth 200 dollars a year if they didn't have the monopoly. This is not only for those individuals, this is a statement.
Rag man As a patient with aHUS on this medication, I really don't know how to respond to that...I don't think my life is more worth saving that others, but then again, my life is everything to me but I don't make 500k a year. I don't know what else to do when I just want to live without fear of dying.
GamerDerp the U. S got 1.1 trillion dollars in2016… 56% of that went into the military… which is 556million… 1million… is nothing to them… now, compared to the 2.3 million that education system got and science… yeah… a million isn't s lot
yyangcn it reminds me of iron fist… $5 to make a drug… and they wantes to tell it at $500 a pop… and in arrow where here was a strand of hepititis that a company created so they call sell a cure… started at $20 a pill… and ended up 20k a pill over night (his words) the goverment is money hungry mongers… eventually most of it (not even kidding more then half) goes to the military… for, just, better weapons
You can probably backwards engineer the formula for half a million. Hire few scientists, rent a meth lab and you got it sorted
patents
tom435111 i'm sorry, we totally forgot a meth lab was legal on it's own
Laitas Y And then get completely destroyed by a patent lawsuit, fined more than you could have made in your entire lifetime, then put in jail. And no, you really couldn't have just 'reverse engineered' this and been successful.
NotANormie Change a molecule slightly. That's cute. So is dying.
Laitas Y this mindset is what we need
How does beeing normal feels?
What kind of dumb question is this?
Having nothing to complain about in terms of mental and/or physical health.
That's my definition of "normal" in that specific context.
From someone with an illness, it's a very real question - it's just hard to put it into words that someone with no idea would understand. Try describing a colour to someone whose never seen before.
@TheBangSro
why
Wow! Finally someone that uses their brain to think....Hahaha 😅
in India we have a strong policy that pharmaceutical companies keep fair prices.. if not then patent infringement cases are not entertained... and American government wants us to change this policy... huh
It’s because your countries rips off our medical research which allows them to keep it cheap. It’s expensive in America because we invent all the drugs
I am a patient on this medication, and it's impossible to describe the complicated feelings I have toward Alexion in a few words.
But the strongest emotion I will forever remember until end of my time, is the despair and hopelessness I felt when my very own life slipping away from my body in the hospital dialysis room. It's something that still haunts me about just how fragile everything is, even after I more or less became "normal" again.
In order to keep a child using Soliris living for the rest of an "Average natural life" it would cost around $52,000,000, Wrap your head around the price. It's truly sad and unfair, maybe creating a company whose profits go toward victims, would be a more effective approach, helping people who suffer from the disease and creating jobs.
Wait until you hear about insulin dependent diabetics !
They shouldn’t even make the medication if it’s that expensive
Shame on them, I had a son that died from muscular dystrophy in 2009. My son was 19 years old and was in pain all of his life. I now wonder after all the money spent that if and when they find a shot for what took his life , will others be able to get it. I now have no pituitary gland and need to take meds just to stay alive. It costs me over 700 a month just to stay alive. Even that much is too much but I am thankful that we have drugs for that at least.
No Pituitary and a poor working Hypothalamus I don't like getting emotional, but I truly hope that everything will turn out great. Wish you so much luck!
Thank you so very much for your kind words. In life we are given what we can handle and so far I am doing just that.
wow this company is sick, why would they charge people 600,000$ to stay alive, why monopolize people's future, wtf is wrong with this world ffs
Al Mahdi no one has to pay that, the insurance companies are basically morally compelled to pay for it as so few people need to drug.
The reason it costs so much is that if the sold it for less the company would go bankrupt and not be able to provide the drug anymore as the R and D cost for a single drug is so high (billions of dollars).
Actually the cost to produce it is in the single digits. What costs money is the amount they have to pay to have a monopoly on its production. Like epipens. 4000% profit.
Al Mahdi It costs money to make those drugs, dipshit. Those people need to live
GamerDerp Watch again. Production costs are only a fraction of the price. Research is mostly done by universities (aka public money). So the company has a ridiculous profit margin.
Nyx Reaper pharmaceutical companies spend millions of dollars to develop drugs like this the start-up cost is so high and there are so few patients that have to charge a ridiculous amount drugs for more common diseases can be cheaper because they're more people buying them thus allowing them to make back their money easier
He said he didn't feel anything while been injected, his mom was like you better be, that's 100k right there you little... Hope this kid make it.
How about we have a government board decide what a reasonable price is. If the company refuses then the government can just nullify their patent and the generic companies can take over.
Well except how most medical research is done by publicly funded universities. And nobody is saying don't allow these companies to profit off of their work. Just don't allow exorbitant profits at the expense of the public good. There are also middle grounds where the government could force the company to license their patent to generic manufacturers at a reasonable rate.
The patent and copyright systems are really broken and both need to be seriously curtailed for the public good.
in the interview the ceo says they based its price on what they thought i was worth to someone....... greedy bastards
This perfectly illustrates why I'm not libertarian anymore: most corporations have absolutely no conscience and will do anything to make more money. The people in those companies should be ashamed of themselves.
Almost no drug companies spend money researching and developing new drugs for ultra-rare diseases. Alexion is one of the few, you have to realize how much it costs to develop these drugs, and that it is absolutely necessary for them to earn enough money to fund future research and development.
I completely understand that, but the problem is that Alexion refuses to disclose the costs that went into making this drug (plus R&D of failed drugs). This indicates they are just trying to squeeze as much profit from it as they can. Drug companies can still overcharge, so governments have the right to know if they're paying a reasonable price or if Alexion is just exploiting its monopoly. Instead of disclosing their profit margins, they choose to manipulate the public with emotional videos, which is a red flag of malicious intent.
Robert De Groot
The drug is their invention. They can do with it as they please, including never disclosing it to the public or offering it for sale, or even taking it to the grave. They chose to disclose the invention to the public through obtaining a patent.
"A patent is a government-granted monopoly on an invention to an inventor or their assignee for a limited period of time in exchange for a public disclosure of an invention."
They could have easily not invented the drug in the first place.
Medical patents should demand that they sell it at a reasonable price, and the transparency to determine such, or they lose the patent. We're playing with peoples lives here.
Well, in cases like that the only argument is the libertarian: if the company doesn't have the monopoly on the drug, other companies would make it much less expensive. The companies made this kinda scheme because they know the government will pay for treatment of sick children. Is using emotional propaganda to make money with public resources. Is against all the libertarian philosophy
So this company is helping people force the government to pay the company....The company goes through lengths to get their money. Lower the cost of the drug and you wouldn't have to jump through all these hoops just to get paid. It doesn't cost 7k$ just to make one bottle.
this is why every country should have a nhs
In Denmark people are being denied treatment for deadly illnesses that would cost a one time payment of approx. 100.000 $ (US).
I would say more but right now I just feel so tired and drained because it's like shouting in the wind. To the rest of the world Denmark is "The Happiest Country in the World" (an outright lie for reasons I'll not get into here) and they (Denmark) is so good at flying below the radar, when all the countries around Denmark get called out Denmark itself remains unchallenged.
I want to say more, but I need to find a way to do it so that it matters, so it makes a difference... some difference, even the slightest difference than this wall o silence that has been build up around and inside this country.
Jake Riches cmin man, you gotta spill. I'd love to know all the reasons why it's not the happiest place in the world.
Denmark, Norway, Sweden, Finland, are all going bankrupt as their socialist society cannot be supported by their economy. If a country wants to grow and be a world player it must be progressive. Heck even Denmark doesnt have to pay for a military as its covered by the USA and EU.
I like how they never actually get into what the company says about the production cost of the drug. They just find some schlep to make a wild guess about what it might cost. Going by what was said I can infer that the drug is comprised of a synthetic antibody. In which case the R&D costs would be astronomical for such a small number of patients.
*****
Nope, just a passing bioscientist.
*****
You can't really be that dense. Don't you understand anything about economics? How many man-years were invested in researching that drug? You do all that research and find that you have a marketing potential of a few dozen patients. They need to charge a lot to recoup their costs or drug research turns into a big money pit. Everyone always criticizes drug companies for not researching rare diseases. This is the reason that they don't research rare diseases.
*****
How do you gleam one's employment from a troll comment on youtube? I don't work for Alexion.
Soliris was originally designed for a target patient population of more than 1 million people. The company is pricing the drug as is to make up for the loss for its investors. Also how do you know how much R&D costs were? Financials don't contain line item analysis. Production of monoclonal antibody treatments is cheap. Once the hybridoma is selected and cultured, the cells just need to be kept alive to produce antibodies. The high cost comes in from research into targeting and identifying the necessary antibody. It can take years of labor by highly paid researchers.
*****
1st I never said it was priced at cost. I said its high cost was due to exorbitant R&D costs for a small target patient population. Oh, so you're a lawyer. That makes since about why you are so pissed off. You must be jealous that someone else is screwing people over.
2 Soliris isn't the only product of Alexion and they have 40 programs in operation. Not only do their patients have to pay for Soliris R&D but they have to pay for the other programs. Not all of those programs will result in marketable drugs. The company will have to eat the costs of the failed programs. Soliris was actually a failed program. It was originally intended to treat RA.
3rd Which is it? Do I work for Alexion or not? I don't know how many man-years were invested in Soliris and the company isn't going to publish that information. What I can tell you that the process of identifying a therapeutic antibody and producing a targeted hybridoma are extremely time consuming.
*****
Funny how the class action suit presumes that Alexion isn't as profitable as you are making it out to be.
R&D costs are always spread out to drug costs. Quite a few of those are trials to find alternative uses for Soliris. If they are approved for more uses then the price for Soliris will drop. I don't know where you are getting the idea of massive profits. They are turning an average of 25-30% profit over expenditures. A few lemons, inevitable liabilities, or inflated operating costs could easily turn their books red. Their pricing has to account for a war chest to ensure the viability of the company while providing their investors a return on their investment.
Simply growing appropriate tumors on the mice for the monoclonal antibody would take months. Succeeding in creating the proper hybridoma would take more months. Creating a stable culture from those cells would take more time still. The process isn't anything even close to 100% efficient, more like 1%. That isn't even accounting for the research identifying the target antibody which would take an indeterminate period of time.
in health care, there are 3 factors: low cost, quality, universality. pick two
Now my husband is in hospital. He was diagnosed with Neuromyelitis Optica, a rare autoimmune disease similar to MS. Whithin 2 weeks he went from a healthy, active, gym-loving man to a wheelchair-bound partly paralyzed man in need for diapers and catheters. This treatment could save his life and save him from going blind, paralyzed etc. Although he's spent all of is life paying lots of money for health insurance it's probably not going to be paid for. And we live in Switzerland - one of the richest countries in the world.
Very sorry to hear about your husband and I am praying for him. How is your husband now?
The fact is that it and many other drugs is unbelievable overpriced, many say the companies need to get the money back they used for doing the research but it does not excuse the fact that pharmaceutical companies is greedy as hell ... This is why things like this should really be done non profit / government and not be put in the hands of greedy corporates.
This shows what we need to do. There needs to be a "healthcare PUCO" of sorts to ensure companies don't price gouge for life-saving medications. Unfortunately, however, the government paying for this sort of thing is not practical.
The government has a duty to pay for it. I pay taxes to keep my fellow citizens alive. If the government doesn't do that with my taxes, what is the point of having taxes?
No, in most countries the government doesn't have to pay for it
This is a map of countries with free healthcare. Notice that the countries without free health care are poor third world countries and America. upload.wikimedia.org/wikipedia/commons/2/25/Universal_health_care.svg
Saam Amerat china India and Saudi Arabia South Africa are third world countries what that even means .
Take that to mean countries incapable of providing their citizens with healthcare.
Saam Amerat actually in Mexico we do have free health care
I wish the best to anybody suffering with an illness and their families.
This world is disgusting in it's greed and filth , medicine should be free especially for people that don't have a sufficient income .
So everyone els should be forced to pay for expensive drugs like this one?
First of all have you heard of insurance. And also why don't you go start a pharmaceutical business and give medicine away for free see how that works
Why did you buy a pharmaceutical business and did you see how it works?
Do United States is the most powerful country in the world we have third will country's out there they provide free healthcare for the citizens and once again the most powerful country in the world the world power will not provide decent healthcare for the citizens and yes I believe that the ones that are better off financially should help the ones that are not.they take our money in taxes anyway and spend it on countless military weapons in secret Geo engineering programs but they cannot provide healthcare for the citizens it's because they don't care do you care
David Caruso In the UK anyway many people have private healthcare as it's so much better than the NHS and it's affordable, the NHS is barely sustainable at the moment...
It's not easy I know
The drug company charges as much money as they can get. Because there are so few patients in this case, they can use media campaigns to force governments to pay huge sums of money for a photogenic patient, because a nation-state can afford the cost. This drug is a monoclonal antibody, which is not that easy to make. Most drugs are small molecules, and can be easily synthesized in any decent lab. If a government wants to, it can simply say "we don't recognize your patent" and make the drug for pennies in their own lab. This has happened with at least one Aids drug, perhaps others. Anyone can do this. All you have to do is find a lab that will make a drug for you. There are lots of labs in the world that do synthesis for hire.
The best and cheapest medical treatment ive gotten was in Malaysia. It costs around 1 usd to visit a public hospital for a foreigner. A private clinic will cost you around 10 usd in Muar, Malaysia with the medicine.
The government subsidies the doctors so they earn around 40k USD a year which is more then enough to live high on the hog in Malaysia
The cost of a drug isn't just the cost of production. It also covers the cost of research, not only to make the drug, but also failed drugs. Most expensive drugs are for very rare conditions. This is because the cost of research can be divided up between a lot of drug sales with common illnesses, but very few sales for people with very rare illnesses. So the governments can afford these treatments, because they only need to pay for these expensive treatments for very few people. Yes drug companies make money, that is because they are companies and not charities or branches of government. And I want companies to see they can make a lot of money on very rare illnesses, so they will develop drugs for more illnesses knowing they will make money out.
(This post might seem strange, that is because what I was replying to has been deleted)
I did not say drug companies do not make a lot of profit on rare drugs. I don't know whether they do or they don't. What I do know is there are a lot of rare conditions that are untreatable now because their rarity means drug companies do not see it as profitable enough to develop a treatment for them.
I want to see drugs for rare illnesses priced high enough for drug companies to invest in them.
When it comes to parents pushing states to buy these rare drugs using emotion. I believe it is a good thing. If that is what it takes to save their child's life, that is a good thing.
Especially in cases where a country that refuses to fund it is as wealthy or wealthier than countries that do fund it.
You might argue that they should cry to the drug companies to give them the drug for free.
But they pay their taxes to the state, not a drug company. Drug companies are there to make as much profit as they can because their duty is to their shareholders. The duty of a state is to its citizens, and their is no greater duty the state has than to safeguard the lives of their citizens.
When it comes to how much a government should spend on a drug to save someones life, the question you are asking is, how much is a life worth?
How much is the life of someone else's child worth to you and the taxes you pay?
More or less than the price of your own child?
But remember however expensive the most expensive drugs for the rarest illnesses are, it will have no effect on your taxes or your countries health budget. This is because the conditions are so rare, the government will have to provide the drug to such few people it wont cost that much compared to everything else money is spent on.
When it comes to disreputable drug companies making huge profits. The place to look for this are the drugs where they make huge profits. These are common drugs which might not have headline grabbing prices, but when multiplied by the large fraction of a state's population that uses them, they reducing the price by a small fraction is enough to make large savings on the health budget and your taxes.
Savings can be made on drugs and treatments that do not work, but politicians have been bribed by drug companies to purchase it. And libel laws are used to silence medics and scientists who try to reveal the fact that they do not work and are a waste of money.
Even in cases where these drugs are very cheap, they are provided to such large numbers of people that real savings can be made by reducing this waste.
These useless treatments include new ones developed by large companies, alternative therapies that have no scientific bases and even superstitious faith healing.
If money needs to be saved the place to look for the saving is where money is wasted however little and not where money saves lives however much.
Yeah, but on top of that every other country in the world but the US is not forced to absorb those costs in the same way. There's actually a ban on importing drugs sold at much cheaper prices elsewhere. The US gov has made a conscious decision to let pharma companies price gouge americans and americans only.
America is the only developed country without free healthcare. It doesn't mean you pay less tax than us. It means the opposite. You pay three times as much in tax for healthcare than us. This is because your hospitals are companies out to make money. In other countries the government negotiates a price with the drug companies for enough drugs for the entire country. So they are able to get very good deals.
Yours individual hospitals buy drugs for individual patients and then bill the insurance company or your government for the drug plus their profit.
So you pay a lot in taxes for those drugs for the same reason you pay $100 for a pair of shoes if you buy it yourself from a shop, but a company would pay $20 each for the same pair if they ordered a thousand pairs from the same factory yours were made in.
Yes you pay a lot for your treatments and in taxes, but the fault isn't with drug companies for making money. It is their job to make money. The fault is with the very unusual health care system you have in America, which is designed to make money instead of treating people.
Saam Amerat - Since you are such a professional when it comes to the American Health care system, please explain the ACA, and why my health insurance premiums went up over 600%.... Don't worry, I'll wait.
If you watched the whole video, you'll see that this is the company's only drug, so in this case that argument falls flat (unless you are suggesting they are working on their second drug, spending most of the profits on that research).
don't forget " even after using " you will die because this is life.. all will be dead..
iQ3 1 but not too soon
If it's so rare that very few people have it, the drug shouldn't be the most expensive drug in the world because they don't have to produce that much of it. What they really should be doing is forcing the pharmaceutical company to lower the price of the drug.
They would never have researched this drug unless they would be able to charge a huge price, so few patients, and R&D is so crazy expensive
How many of you here commenting actually has one of these two diseases, or know someone personally that does.
I am actually a patient with aHUS and on this medication. The story is so much more complicated than this 18 min video can possibly cover.
Me!!!! I was diagnosed with aHUS in 2016. I received Soliris infusions for the first 4 years (until the new drug Ultomiris came out). I've been on the new drug for the past 2 years.
Everyone knows that the fewer people effected by a drug the more they'll charge for it. Partially because it's a low production drug and partially because if a few people's prescription costs cover the cost of R&D for a more mass product drug at a lower price it's a worthwhile trade-off.
If I was the president I would make it illegal for health companies to take advantage of people like this
Sue the company
This kid is so chill in front of the camera
It's all sweet and dandy, but how many starving orphans in Africa or wherever we can keep alive for $500 000 a year?That's about 5 BILLION pounds of wheat. EVERY YEAR. Why life of one person should be worth that much to people who don't even know the person
btw people care about their own not other people worldwide
Should be naming the company in the headline for SEO and consideration for the viewers. Good reporting though
The government didn't pay for me to get out of the projects.
I can agree with the fact that the government wouldn't want to pay for the meds because paying for their bills will only prolong the children's life for a period of time, it will not stop the children's pain for good so why not use that money on research or for people that has a chance to be cured
so they use public sources to develop the drug but cant be questioned or demanded to lower the price?...
The Ontario Government invest $648,000/year on one life? Thats a waste of money. It could be invested better in many more kids.
Medical blackmail.... A crime higher than mass murder
12:25 reveals the fleecing. Anyone with any chemistry background understand making various mixtures isn't that expensive to manufacture... we do live in the industrial era. Otherwise insulin would be hyper expensive with its drawn processes which include growing and harvesting yeast producing insulin then refining the insulin.
It's super cheap. It's artificial monopolies, and allowing no competition even with generic producers in an inelastic demand curve (people will pay any price to stay alive and/or avoid misery). So have governments produce these medicines to compete. Only reason profit motive exists is due to the effects of competition that usually leads to more suppliers (more supply), better quality, new innovation, etc. When competitive markets are violated severely like in medical sector, you must reach to a collective method for competition.
12:30 Yes the manufacturing cost is less than the end price, but you have to add in the cost of patient trials, and the cost to apply to common drug reviews both federally and provincially, which is hundreds of thousands of dollars per submission. Those are "fixed" costs by economic terms, and the reason why the drug companies hold patents. Once those fixed costs have been reconciled the price better reflects the variable cost of manufacturing.
Well, that s all nice and true but why wont the company disclose this costing to show the real cost so that governments can make proper decisions, I.e. not emotional or based on populous emotions that swing votes? But then I understand the private sector going for as much as it can. After all, a corporations duty is toward its shareholders, not tne taxpayer. Perhaps regulations should be enacted to curb that innate trait of human nature: avarice!
They don't provide it to the government, but they do provide a cost assessment to the Canadian Agency of Drugs and Technology in Health, (CADTH) which is the independent review board that determines whether or not a drug will be recommended to the provinces for coverage under their health plans. Here's where it gets interesting. I have a rare disease and contacted my extended health insurer, the Premier, Health Minister, Deputy Health Minister, and all the pharmaceuticals that produce my drug. They all said it rested in the hands of CADTH. Another patient who volunteered to provide her contact info to a pharmaceutical got in contact with via the pharmaceutical. Under Canadian privacy laws patient information can not be given to third parties, unlike the US. This is where the video is a little off, because there are so few of us, and we can't find out who each other are it makes it very hard to form a patient group. CADTH only would take patient group submissions until Feb 2014 when the other patient and myself decided to submit patient input individually for a competing drug we were taking. The company had contacted her specialist who then told us the drug was under review. Our submissions resulted in CADTH doing a pilot study on how orphan drugs are reviewed.
I managed to get my extended heath insurer to cover my medication, but I am one of the lucky few.
If there is only one thing I ask of people reading this, PLEASE contact CADTH, and stress the importance of their continuation in examining how orphan drugs are reviewed. Also there is a list of all the drugs that have been reviewed by the agency. Take some time to read them, as the reports are quite interesting.
Thank you very much for that insight. I will have a look at CADTH and its reviewing process and perhaps provide comment. It would not be a bad idea to have disclosure of cost to manufacture the drug, or as a more drastic measure, shorten to 7 years the patent protection on the medication.
Jean-Jacques Desgranges It's a shame Canada has fallen back on it's R&D in health care. Much is done in Europe these days, which doesn't help the situation...small population, large geography in this nation of ours adding it's own coefficient to the equation.
Tell big pharma to stop selling it for 7,000 dollars a bottle..
So how much was the R&D of the drug? Not just manufacturing.
To anyone who needs this, you gotta go buy this in Turkey, the price is much lower (but still horribly expensive unfortunately...)
good thing here in the UK we have free healthcare. America you should learn from us.
Imagine sacrificing your child or your home and everything you have to keep them alive! Painstaking!
It kinda make me wonder if the drug manufacturer doesn't want to invent the cure so they can make more money by selling the suppressant.
This was posted two years ago. Has anything changed? Has the drug company lowered their cost?
The FDA should remove regulations and barriers to entry for generic drugs. Doing so will encourage other companies to invest in developing similar drugs. This will drastically lower the prices.
The price of anything is what people are willing to pay fore it.
From the wikipedia: Eculizumab has exclusivity rights until 2017. Hopefully the price will go down with competition.
just to give some context to pharmaceutical products. first of all patents, drugs are patented for 25 year in europe at least, generally the company will patente the drug very early in the devellopement if the drug has any potential, this is done to avoid loosing the patente if an other company have the same idea. to be fit for human consumption the drug along with dozens of similar has to go throught a 15 year process identifying the ideal and safest drug for consumers (clinical trials). this leaves 10 years for the company to make a profite of the drug before the patent comes to the public domain. on top of that that drug is tested with hundreds if not thousand of other potential drugs in this process until the final drug is selected. with the small number of patients the price of such a drug will be extremly expensive because the R&D cost a lot.
why not just buy one bottle....and get a factory in China to reproduce it?? I would if I lived in Canada lol
I think people missed the part where it was revealed that 80-90% of the R&D was funded by public money in mainly university studies. They don't make any other drugs because they don't do R&D, they made a patent out of a drug almost completed. They've made 6 billion dollars in 8 years already, that's more than enough for a drug that costs $60 to produce.
shouldn't they pressure the company. charging something that high is pure disgusting.
This is just how things are at this point and time with this drug. I know some patients don't have time but in time a new drug will be created that does the same thing especially if it's so profitable. Then the drug companies will compete for the market and prices will go down. The real problem right now is there is no real alternatives medicine.
Philip Phil That's bang on point. Look at Somatropin, there are 8 different companies that produce it and the amount of patients who need it aren't great in number. It's a highly competitive market with few clients. After a period of time the patent license expires and competing companies can enter the market. If the issue is the patent law, it still comes down to the government.
Philip Phil I'm not certain your faith in the "invisible hand" of the market is founded, and I'm not sure that should be a consideration when we're talking about saving human lives. Profit should be secondary to people when lives are on the line.
Philip Phil I am an aHUS patient, and thank you, this is one of the only few sensible comments I have seen so far.
It's not profitable cuz the market is so small
Im curious why we don't have a generic version of this drug...
Even after their patent is expired. They would try to trick the system that will give them another 5 years
You have no chance to make generic guarantee
Someone needs to do something about this.
Hopefully, many other companies will make this drug. That way, hopefully the price will go down.
US drug companies, putting a price on human life since 1888.
Too bad there's not a way for another company to start a price war with Alexion with a generic Solaris right now.
A drug takes at least 10 years of research before they come out. and in case of soliris it took more. starting from concept of machenism, research into the disease, research into the interaction between drug and the disease as well as normal human physiology, to screen any foreseeable adverse reaction (so-called "side effects"). then trial in vitro (lab, tissue culture, test tubes etc.) then in vivo (animal models) which in the case of PNH I imagine is hard to stimulate in lap rats, to be able to see the effects of the drug in live animal as well as to monitor for unforeseen adverse reactions. then the real test begins in human trial, this will make or break the drug, then on to clinical trial. And you can imagine the process and the COST of all this: thie lab equipment, salary for scientists and researchers ( which more than most ,i can say ,is very sincere about helping fellow human beings), money for trial subjects, the sheer man and brain power which goes into this kind of thing. OF COURSE companies are doing this for profit, they risked being sued and they spend a lot of money on this. And they must make fast profit bc copy rights do have an expiration date, and especially for rare diseases (less prople would buy it) they have to do their best ot exert their profit. im not saying that Drug companies are all flowers and sunshine but its just the way the world (and capitalism) is. im not saying that the world cannot be changed, it can be, just not by killing CEOs.
Napon Y. Sad truth...
Napon Y. The guy who owns a small pharma company said that in the case of soliris the vast majority of the research was government funded at universities.
well this is an information i didnt know, thank you. tbh i didnt event finish the video. but if what youre saying is true, then i dont know what to feel. smh
Monopoly is a capitalism problem.
Stupidity seems to be your problem.
its insane drug companies can charge any price they like
someone should reverse engineer this drug let the illegal drug dealers sell this
It could work, many university researchers have the skill, the difficulty is avoiding being caught. What we really need is a country to decide not to uphold patent laws. Then there could be an offshore medical treatment haven.
end my life I probably dont know lol just throwing out some ideas out there and there may be people already selling knockoffs of this drug already due to its price and demand for it. Just a thought.
that could work
wow, is that company blind to people with these disease? or is it truly THAT expensive? no one should have to pay that much
I am not a fan of government intervention but in this case there ought to be legal means used to keep companies like this from profiting at this level. When most R&D was done with public money, that justifies the fairness of the limitation. Perhaps drastically limiting the patent time or not allowing full patent protections at all. Once generics enter the market prices drop sharply.
Freaks. Putting a price like that on human lives. That's horrible.
There needs to be a margin limit on these drugs....Only allow them to mark up so much. The same way gas stations can only charge so much for gas or for cigarettes.
NHS still be splashin it for free 🇬🇧🇬🇧
Free? No, they pay for it.
Sam Stiglitz Soliris is actually provided free to British citizens by the NHS, although does cost the NHS itself £82 million annually to provide such.
Aidan Lovegrove no wonder the NHS is skint, if we weren't paying that then we will be a little bit better, oh well - the drug is amazing
Aidan Lovegrove us that 82million annually per person?
Yes, Aidan. But nothing is free. Yet, people insist it is. It's taxpayer funded healthcare, not free healthcare. That 82 million bill is footed by everyone. I don't have to lecture a British citizen about the long term financially viability of the NHS, I know it's a major issue.
Assuming 1 in a million have it, there are probably 50-60 British citizens that require it.
reason privatisation is a problem right here
I'm all for science & the advances it has made too just about every aspect of life but I've often wondered what affect this will have on the human race... We have more or less ruined natural selection, the strong are no longer alone in their survival. Is this a good thing or a bad thing?? Btw I'm not a "pro-eugenic" person though I do see the science behind it.
I ask your pardon if some of what I say comes off strange I'm on a few different medicines right now. I myself have Atypical HUS and I have a family and a son who I love very very much who'd miss his momma. I am in the hospital now fighting this disease AGAIN hoping I can get Soliris. I don't believe natural selection revolves around the ones that have health problems but the ones who do dumb things and dumb down the world. A king can have cancer or any other disease or disorder. that's not what defines him. What defines him is how he ruled, what he taught his people, and etc. Besides who are you or anyone else to put a price on my life?? Js, man.
TheWebCritic What about those very same tribes finally finding out how horrible slavery was and fighting back against the europeans to end transatlantic slavery
Daniel Detweiler yes finally someone shares my viewpoint on this
Y Yn Africa. Is. A. Continent.
Y Yn It just doesn't make sense to talk about it as if it is one country? Why do you feel the need to be so ignorant😂
unfortunately there are a million sad stories to be heard, from every walk of life but decisions cannot be made purely from emotion. They must be made out of emotion AND logic . when government pays for anything, it is the taxpayers paying for it . and when you're dealing with other peoples money ,logic and fairness is what should be used not emotion, you can use emotion when using your own money , and just to be clear (tax money = other peoples time and labor)
Haus skul I
Soliris will eventually come off patent, so what the patients need is a way to get help and bridge the costs until a generic equivalent becomes available. How to pay for the life saving drugs are a really hard question. Each person wants the very best medicine for themselves or their children, regardless of cost. The government must figure out how it can do the greatest good for the greatest number of people on a fixed budget.
How much does it cost to make? I didn't watch the whole thing.
Alexion just made their headquarters in my home town last year and already has layed off 210 employees that's 7% of their workforce in less than a year. They're stocks are still on the positive side but let's see how long that will last.
why don't government invest in developing a successful alternative rather than giving it to alexion
it is simple. if a drug company cant extort society to pay because of regulatory backlash, then they simply not develop drugs with the potential of backlash, which means no drugs for rare life afflicting diseases.
Prices of drugs that treat any rare disease is expensive. Essentially, the development and marketing costs of most drugs is more or less the same. The only variable is how many people they can sell it to.
A drug only 1 out of 1 million people need = expensive
A drug 10% of the population needs regularly = cheap
This is why health care should be entirely not-for-profit. Too many people are out to make money off of other people's misfortune.
54k a month. This is absolutely a money grab for drug companies. There is no chemical that costs this much nor the scientists labour who came up with the composition.
Unethical, unprofessional, inhumane un- medicinal field that should be public safety and health priority. This is blatantly pure greed!
How to keep medical costs at their real prizes:
1. Every country should decide together how much they are willing to pay to pharmaceutical companies.
2. The prizes are decided based on how much publicly funded research has been spent on them and also the manufacturing prizes. The prizes must be very realistically estimated.
3. Only one offer is made and if the company isn't willing to agree on that, it's not going to happen.
The government should just make it's own.
@silverbullet2008bb...governments don't make drugs.
How much does it cost to treat one of the patients if they don't have the drug? That seems to be a factor in their calculations. If that child was in the hospital for over a month not even getting well, as first example, that adds up in cost. Give the child the drug and they are not needing all the expensive medical treatment. So their competition isn't other drugs, but it is the cost of regular medical treatments like going into a hospital or going on dialysis. -- We may see this same thing with last resort antibiotics to drug resistant bacteria.
if this was cheap no one would have spent the money to research it
How do I know this video is not being paid by the said company?
ahhhhh booohooo. 500,000 can save hundreds of kids from starvation. Yes this is sad, but in the big picture it's insignificant.
in the defense industry the government sets the max profit a company can make on anything designed for the government. They should set a similar law for any pharmaceutical drug that uses any publicly funded research.
I find it interesting how this problem is mainly being noticed in Canada... oh wait dont they have "free" healthcare? I wonder why they're struggling to pay.. I wonder where the money comes from..
This is... Silarious
Darren Vail *ba dum tis*
Sooner or later, the drug will become generic and the price will come way down. I wouldn’t doubt that it’s already available in places like India as a generic.
when a company is making profits in the billions, theres no excuse as to why anyone in the world cant have the drug at a discounted rate. Ethical standards and laws need to be forcibly enacted internationally in order to pressure pharmaceutical companies to disclose costs and enable transparency! But itl never happen and they know it.
Alexion- Pay us what you think your life is worth?
I know it's bad to be sick but man this child must feel terrible cause a lot of money spent on him
Can't we just genetically alter or give the patient new(healthy) leukocytes to cure this?
Holy hell, why is it so expensive? Why can't people pay only the true cost of the drug? Is this drug manufacturer that greedy?
The Cat Ate My Shoe people have to make a profit and the more profit they make the more they expand the company and the CEO's and higher ups earn
hate those kids saying "normal". EVERYONE IS DIFFERENT!