One of my best friends has a rare blood disease that is usually fatal withing 10 years of diagnoses(he is on year 11). However recently there has been found a possible cure or treatment to combat the disease. Although there is a new cure/treatment to obtain it requires and astronomical amount of money. Even in Canada where we are praised for our health-care system my friend has fallen through the cracks because of the price tag of the treatment.
He is currently on a treatment that is not very effective and has serious consequences after long term use (e.g. more than 1 year) and he needs this medicine to continue to live a full life.
The drug company charges this huge price for there cure because of the illnesses rarity and that there is not a huge target market and they say for them to make profit on their investment of finding a cure they need to charge this impossible amount to pay for a regular citizen.
He is currently trying to get the Provincial government to cover his drug costs but so far there has been little progress on that front.
Wow, that is really sad and inspiring. I hope your friend can continue to fignt this, and that somehow he can get the medicine that he needs. Not sure what can be done, but i am sure that something will happen.
Is the new drug significantly more promising than the old stuff? Like Barrin said you can always organize a charity drive; if enough caring people work hard enough, you'll get the money eventually.
On June 22 2011 11:27 Barrin wrote: Wow that's crazy...
I know that for desperate cases like this you can get a lot of sympathy (and donations) by doing things like blogging or maybe even youtube videos.
It cost $500k a year. Poor guy is screwed
Dear god $500k/year definitely constitutes as outrageous. Wow well the only thing I can think of is for your friend to make a really popular iphone app. You can get millions if its really good. Feel bad for your friend though, hopefully he can figure something out. It's sad when something can be done but money gets in the way.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
Unfortunately pharmaceutical companies are businesses too. It costs literally billions of dollars to develop new drugs, and without reimbursement for them research couldn't move forward.
It takes ~$1 billion for a company to bring a drug to market, years of R&D, studies, and meeting FDA regulations.
When a drug is produced to treat a rare disease/condition, costs like these are unfortunate but expected.
Edit: (I assume costs to bring a drug to market is similar in Canada, but I'm less familiar with the specifics)
Hmm...in the article it states that someone made a complete recovery after 'a few infusions,' which are given every 2 weeks. Assuming the cost of the drug (given in the article) is accurate, it works out to ~$19,000 per infusion. Edit2: Oh, misread the part where it specified that the patient has to receive the treatment for the rest of his life.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it.
It costs so much because only 8,000 Americans have that disease. It costed 800 million dollars and 15 years to research the drug.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
Unfortunately pharmaceutical companies are businesses too. It costs literally billions of dollars to develop new drugs, and without reimbursement for them research couldn't move forward.
Yeah but those guys make way too much money. I understand it takes excellent minds to develop this stuff but commanding 7 figure salaries for executive types, not even the researchers, and asking for more is a tad ridiculous.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it.
It costs so much because only 8,000 Americans have that disease. It costed 800 million dollars and 15 years to research the drug.
not so sure about that. considering that he had this condition since he was a little kid, it might have been labeled as a pre-existing condition. insurance sure as hell would use any excuse they can to get out of a $500,000 per year expense
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it.
All of it?
Don't fool yourself.
Especially since this is considered a "pre-existing condition", they would at the most pay for maybe half of it. No insurance company (AKA a business) would spit out 500k a year for some guy spending less than a fraction of that in his payments. Even here in America with perfect insurance he would be paying a shit ton out of pocket.
On June 22 2011 11:31 Voltaire wrote: I thought Canada had universal healthcare? Or is this friend in the US?
Just because we have universal health care, doesn't mean we still don't pay for medication we need to take.
Just wanted to highlight this, i also do believe in recent years there have been changes to canada's version of universal healthcare in that you can pay for treatments yourself if you don't want to have to wait or something isn't normally going to get covered it's not completely up to the state.
On June 22 2011 11:49 OsoVega wrote: It's unfortunate that here in Canada we don't have the option to buy insurance for children in case anything like this happens.
Whoa whoa whoa hold the phone.
Canada doesn't have supplemental medical insurance??
On June 22 2011 11:49 OsoVega wrote: It's unfortunate that here in Canada we don't have the option to buy insurance for children in case anything like this happens.
Whoa whoa whoa hold the phone.
Canada doesn't have supplemental medical insurance??
The problem is that if the Gov provides the 500k to treat him then elsewhere two people with conditions that cost 250k each to treat will go untreated. You can't simply go "treat everyone", the money isn't there. In a publicly funded system there has to be a degree of rationing, cost effectiveness is a factor. The advantage is that the money is spent much more fairly, rich people don't squander money on expensive stuff while the poor can't afford essential stuff for a fraction of the cost but unfortunately some stuff is judged as simply not worth it.
I'm sorry for your friend and I wish there was a better answer. Good luck.
On June 22 2011 11:49 OsoVega wrote: It's unfortunate that here in Canada we don't have the option to buy insurance for children in case anything like this happens.
Whoa whoa whoa hold the phone.
Canada doesn't have supplemental medical insurance??
nevermind, I'm retarded
OH, phew. Thank god. We dodged a real bullet there.
On June 22 2011 11:46 Medrea wrote:Yeah but those guys make way too much money. I understand it takes excellent minds to develop this stuff but commanding 7 figure salaries for executive types, not even the researchers, and asking for more is a tad ridiculous.
It's true that the researchers aren't the one making 7 figure salaries. The top executives might, but the top executives at any company that large will.
Either way, those salaries and bonuses are mere drops in the bucket compared to the money coming in and out. The vast majority of profit goes back into researching the next generations of drugs. If the execs cut their salaries down to nothing, the cost of this kid's treatment probably wouldn't drop by a tenth of a percent.
This might be stupid, but if you know the chemical structure you can try to get a chemist to make it for you (obviously dont resell or even tell anyone about it). It would be as good or as pure as the pharma company but if hes going to die you might as well try everything.
On June 22 2011 11:53 KwarK wrote: The problem is that if the Gov provides the 500k to treat him then elsewhere two people with conditions that cost 250k each to treat will go untreated. You can't simply go "treat everyone", the money isn't there. In a publicly funded system there has to be a degree of rationing, cost effectiveness is a factor. The advantage is that the money is spent much more fairly, rich people don't squander money on expensive stuff while the poor can't afford essential stuff for a fraction of the cost but unfortunately some stuff is judged as simply not worth it.
I'm sorry for your friend and I wish there was a better answer. Good luck.
Unfortunately this young man's death is going to be extremely "lame". People have to learn though that in this modern times we have run out of "miracle" cures. Very rarely do we find an inexpensive alternative. ATM anything we cannot cure, it is obvious that a developed cure will be far too expensive.
Take for instance the common cold. Is it curable? Oh I'm sure sometime way WAY down the road we will find a cure. Will it cost way more than the damage a cold can do? You bet. Why spend billions curing a cold when you can wait a week right? See that's what I am getting at.
On June 22 2011 11:56 bean183 wrote: This might be stupid, but if you know the chemical structure you can try to get a chemist to make it for you (obviously dont resell or even tell anyone about it). It would be as good or as pure as the pharma company but if hes going to die you might as well try everything.
Its actually the administering that is expensive. Evidently it takes a very large amount of this rare drug. And it has to be properly administered over a 35 minute period twice a month for the rest of the patients life.
This reminds me of Dr. Burzynksi incident thats been on going for a good 20-30 years now or so. It's about the FDA's war against his different cure for cancer that does work. They try to throw him in prison while at the sametime approving him for clinical trials, but now there's a long full length documentary showing his side of the story. They were showing the full length up to June 20th. + Show Spoiler +
The first 30 minutes is only about the medicine itself, the other hour and a half is about the national cancer institute, medical board of texas, FDA, and finally Phrma, trying to stop him every way possible.
On June 22 2011 11:53 KwarK wrote: The problem is that if the Gov provides the 500k to treat him then elsewhere two people with conditions that cost 250k each to treat will go untreated. You can't simply go "treat everyone", the money isn't there. In a publicly funded system there has to be a degree of rationing, cost effectiveness is a factor. The advantage is that the money is spent much more fairly, rich people don't squander money on expensive stuff while the poor can't afford essential stuff for a fraction of the cost but unfortunately some stuff is judged as simply not worth it.
I'm sorry for your friend and I wish there was a better answer. Good luck.
Unfortunately this young man's death is going to be extremely "lame". People have to learn though that in this modern times we have run out of "miracle" cures. Very rarely do we find an inexpensive alternative. ATM anything we cannot cure, it is obvious that a developed cure will be far too expensive.
Take for instance the common cold. Is it curable? Oh I'm sure sometime way WAY down the road we will find a cure. Will it cost way more than the damage a cold can do? You bet. Why spend billions curing a cold when you can wait a week right? See that's what I am getting at.
Not at all. The cure for the common cold would be incredibly valuable, every store in the world would stock it. The problem is it's a virus and actually quite difficult to cure.
On June 22 2011 11:56 bean183 wrote: This might be stupid, but if you know the chemical structure you can try to get a chemist to make it for you (obviously dont resell or even tell anyone about it). It would be as good or as pure as the pharma company but if hes going to die you might as well try everything.
Its actually the administering that is expensive. Evidently it takes a very large amount of this rare drug. And it has to be properly administered over a 35 minute period twice a month for the rest of the patients life.
Whats so expensive about the administration? I think its just an iv that can be done by anyone in the healthcare field according to the website. The drug itself is not that expensive(500k per year) to produce, its just the R&D invested.
Maybe its too complicated to make in a academic setting, but i doubt it.
edit : this probably isnt likely, but if i was dying and couldnt afford my drug id sure as hell try it
Jaybee says "Your friend should evolve immunity or be eliminated from the human race."
There was a case that was on the front page of the Toronto Star a few months ago where a 18 year old had some sort of rare bone disease. Eventually his treatment was paid via donations.
On June 22 2011 11:53 KwarK wrote: The problem is that if the Gov provides the 500k to treat him then elsewhere two people with conditions that cost 250k each to treat will go untreated. You can't simply go "treat everyone", the money isn't there. In a publicly funded system there has to be a degree of rationing, cost effectiveness is a factor. The advantage is that the money is spent much more fairly, rich people don't squander money on expensive stuff while the poor can't afford essential stuff for a fraction of the cost but unfortunately some stuff is judged as simply not worth it.
I'm sorry for your friend and I wish there was a better answer. Good luck.
Unfortunately this young man's death is going to be extremely "lame". People have to learn though that in this modern times we have run out of "miracle" cures. Very rarely do we find an inexpensive alternative. ATM anything we cannot cure, it is obvious that a developed cure will be far too expensive.
Take for instance the common cold. Is it curable? Oh I'm sure sometime way WAY down the road we will find a cure. Will it cost way more than the damage a cold can do? You bet. Why spend billions curing a cold when you can wait a week right? See that's what I am getting at.
Not at all. The cure for the common cold would be incredibly valuable, every store in the world would stock it. The problem is it's a virus and actually quite difficult to cure.
Nono, I think you missed the point. What if the cure for cold needed like, an entire trip to the moon for fresh moon rocks. Can you see the local shop-rite pharmacy stocking billion dollar tablets on there shelves? There is a point where too expensive a cure is no cure at all is what I am saying.
Unfortunately this young man's death is going to be extremely "lame". People have to learn though that in this modern times we have run out of "miracle" cures. Very rarely do we find an inexpensive alternative. ATM anything we cannot cure, it is obvious that a developed cure will be far too expensive.
Take for instance the common cold. Is it curable? Oh I'm sure sometime way WAY down the road we will find a cure. Will it cost way more than the damage a cold can do? You bet. Why spend billions curing a cold when you can wait a week right? See that's what I am getting at.
The common cold costs us billions of dollars every year so I think a cure would be worth it.
On June 22 2011 12:03 Wombatsavior wrote: This reminds me of Dr. Burzynksi incident thats been on going for a good 20-30 years now or so. It's about the FDA's war against his different cure for cancer that does work. They try to throw him in prison while at the sametime approving him for clinical trials, but now there's a long full length documentary showing his side of the story. They were showing the full length up to June 20th. + Show Spoiler +
The first 30 minutes is only about the medicine itself, the other hour and a half is about the national cancer institute, medical board of texas, FDA, and finally Phrma, trying to stop him every way possible.
Unfortunately this young man's death is going to be extremely "lame". People have to learn though that in this modern times we have run out of "miracle" cures. Very rarely do we find an inexpensive alternative. ATM anything we cannot cure, it is obvious that a developed cure will be far too expensive.
Take for instance the common cold. Is it curable? Oh I'm sure sometime way WAY down the road we will find a cure. Will it cost way more than the damage a cold can do? You bet. Why spend billions curing a cold when you can wait a week right? See that's what I am getting at.
The common cold costs us billions of dollars every year so I think a cure would be worth it.
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
The problem with the common cold, as Kwark said, is that it's a virus. More accurately, It's actually caused by hundreds of unique viruses. You can't develop a single vaccine for all of these viruses, because many of them are so structurally unique that no one antibody will bind to more than a few of them. If you think flu vaccines aren't as effective as they should be, a cold vaccine would be orders of magnitude worse.
You actually do become immune to each unique strain of cold after you recover from it (this is one reason why kids get colds far more than adults), but there's always a new strain waiting to come home with your kid at the beginning of each school year.
I interviewed at the company who developed Soliris. Unfortunately, there are pharmaceutical companies out there whose strategy is to target these rare diseases to invest resources for R&D. The plus side is that they find therapeutic drugs for these diseases. The minus side is that R&D is not cheap, and since the disease is so rare, the burden falls on the few people with the disease to pay it off.
There are also rare diseases for which there is no cure, such as certain metabolic disorders or faulty DNA repair mechanisms. What's better? Having a disease that can benefit from $500,000 / year of treatment costs, or having a disease that has no treatment?
On June 22 2011 12:19 LeoTheLion wrote: I interviewed at the company who developed Soliris. Unfortunately, there are pharmaceutical companies out there whose strategy is to target these rare diseases to invest resources for R&D. The plus side is that they find therapeutic drugs for these diseases. The minus side is that R&D is not cheap, and since the disease is so rare, the burden falls on the few people with the disease to pay it off.
There are also rare diseases for which there is no cure, such as certain metabolic disorders or faulty DNA repair mechanisms. What's better? Having a disease that can benefit from $500,000 / year of treatment costs, or having a disease that has no treatment?
Yeah I could argue that a non practical cure is pretty much no cure at all.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it.
All of it?
Don't fool yourself.
Especially since this is considered a "pre-existing condition", they would at the most pay for maybe half of it. No insurance company (AKA a business) would spit out 500k a year for some guy spending less than a fraction of that in his payments. Even here in America with perfect insurance he would be paying a shit ton out of pocket.
That sucks though OP.
Of course they won't cover pre existing conditions. The whole point of insurance is to buy it before he gets sick.
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
These are the options he's looking at right now, although it takes a while before he can get citizenship and I don't know if you know this but a lot of the time people get denied citizenship because they may cost to much money to taxpayers, I know in Canada they do this. I think my friend is fortunate in the fact that he can apply for dual citizenship with the U.K. But I don't know how long of a process that will be before he receives treatment.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
Unfortunately pharmaceutical companies are businesses too. It costs literally billions of dollars to develop new drugs, and without reimbursement for them research couldn't move forward.
Yeah but those guys make way too much money. I understand it takes excellent minds to develop this stuff but commanding 7 figure salaries for executive types, not even the researchers, and asking for more is a tad ridiculous.
If they didn't make good money for their efforts, they wouldn't have nearly as much an incentive to develop new drugs and conduct research, and the drugs we have today that are able to cure diseases wouldn't exist at all, and there would be no hope. Yeah, it sucks, but there's nothing you can do about it, and pharmaceutical companies getting rich is the lesser of two evils.
Only hope is that the government will pay for it, very unfortunate that he has to suffer from this illness.
Isn't it sad how money can run some peoples world into the ground sometimes. Theres honestly too much to debate here. It's might(whoever can make the money) is right(will live) vrs all(every person that is situationally destitute in some aspect) should prosper(live). Personally I go with the second option but there is argument for the first. Things are different when your actually in the situation though.
i think as we get older , many of us teamliquidians are going to pop up with fatal diseases. ive already had 2 relatives die from cancer, one from rapid-onset alzheimers, and one family friend die from multiple sclerosis. i knew a lady of around 50 who randomly got cancer and died less than a year later, and another MS victim of around 35 who was one day smiling and giggling and the next day dead.
this shit is so random, one day you will wake up and suddenly be diagnosed with a terminal illness and have 1 or 2 or 5 years to live. pretty sad shit and best not to think about it :/
The drug companies can't jsut hand out cheap drugs, theyre a business, and look at it this way. If they did hand out a drug for a rare disease and ran a huge ass loss on it, then more than likely they wont be able to develop new cures and even more people will be harmed.
This happens all the time. Even when it comes to health promotion. Say X amount of money on anti smoking adds saves 100 lives, and X amount for money for adds to promote washing your hands regularly saves 50, its only common sense that if you have to pick one, you pick the one that saves the most people. Its better for the gov. to spend 500k/year on other people than this guy. sad but true. its how the world works. And while its not nice that this guy is missing out on his drugs, it wouldnt be nice if they did fund his drugs and many more people lost out on their drugs.
Well, bone marrow transplant is an option, I believe. It's pretty hard to find a matching donor, but not impossible.
So, guys, go donate some blood and, while you are there, tell them you would like to register yourself as a possible bone marrow donor. The chances of you being called are pretty small, but you might save a life if you do.
On June 22 2011 13:35 GabrielB wrote: Well, bone marrow transplant is an option, I believe. It's pretty hard to find a matching donor, but not impossible.
So, guys, go donate some blood and, while you are there, tell them you would like to register yourself as a possible bone marrow donor. The chances of you being called are pretty small, but you might save a life if you do.
Bone marrow transplant has its downsides as well. He'll have to be on immunosuppressive drugs for the rest of his life (which aren't cheap either), and have their own set of problems.
The fact is unless governments devote their entire budgets to healthcare they are going to have to ration. The reason the Candian system is considered one of the best in the world is that the process for getting governent listing is incredibly rigorous. Drug companies have to prove cost-effectivess for their treatment before it gets considered. What this means is that if the proven effectiveness does not outweigh the cost of the medication it will not be funded. This can be due to the price being charged, the number of patients, the mode of treatment, the supportive care required or any number of other factors.
Unfortunately for your friend Alexion is a relatively "small" pharma companies. Most have some sort of compassionate use program in countries that have universal care. I assume this is not the case for Alexion.
As for the debate about pricing of drugs, companies gain nothing but overpricing their medication. You can't support R&D if you have no drugs to market. The reason rare diseases are targeted is because their mechanism of action can be determined and a truly effective medication can be produced. This significantly shifts the cost/benefit in favour of reimbursement. The small number of patients is a good thing, in that the expected demand for the treatment will be low.
Rare disease treatments also have the benefit of using specific tools to treat the condition. These tools can be used in other indications as well. In some cases a targeted drug can be used in other setting because of what it targets. Thus the investment in the original R&D pays off multiple times.
I'm not sure about Canada but it Aus there a provision for Orphan status drugs which are medications that treat less than 2000 patients per year. The get priority review and reviewed more leniently due the relatively large benefit that can be gained. If this is the case for this medication than it seems that there is a pricing issue.
Unfortunately we can't have everything and luckily Canada has one of the better systems for pricing medications. Nothing is simple when it comes to health economics.
Edit:
On June 22 2011 12:03 Wombatsavior wrote: This reminds me of Dr. Burzynksi incident thats been on going for a good 20-30 years now or so. It's about the FDA's war against his different cure for cancer that does work. They try to throw him in prison while at the sametime approving him for clinical trials, but now there's a long full length documentary showing his side of the story. They were showing the full length up to June 20th. + Show Spoiler +
The first 30 minutes is only about the medicine itself, the other hour and a half is about the national cancer institute, medical board of texas, FDA, and finally Phrma, trying to stop him every way possible.
This is proven BS. The guy was found guilty of fraud and his supposed wonderous trials have been in recruitment since the early 90's. The FDA has incredibly strong standards for proving a medication works and if it doesn't stack up too bad. This guy basically experimented on patients for 30 years. This has also been discussed previously but got closed. http://www.teamliquid.net/forum/viewmessage.php?topic_id=233309
Yes its a lot... but I dont agree with people saying its "overpriced" or "outrageous". I dont like pharmaceutical companies, but they are a business, and the more rare the disease the less "reason" to research it. If they were only greedy and after money they would never even research this type of drug, because I can pretty much guarantee they will make NO money of this drug, and loose lots instead. They put in huge amounts of research and years of work, then they finally get the drug, and for 7 years they try and sell it. Then it becomes generic and they no longer get any of the profit. So to recoup the ~billion dollars they put into the drug, yes, they have to charge a huge amount of money.... But it doenst stop there, because even if they break even (which wont happen if its a rare disease and the drug is not commonly used), then one unknown side effect is found out, that they werent able to find with 15 years of research, but juries say, oh, they are big pharma and evil, and award huge settlements against the company.
So now, they have to pay lawyers, and pay settlements for the drug that they have yet to make a profit off of....
Now, I dont know a better system, so I am not one to throw stones, we have a crappy system from both sides, and I am not smart enough to figure out how to make it worth for both, however I dont think pharma is using drugs like this to turn a profit
If they were only in it for the money they would only be making drugs for weight loss and cosmetics, because that is where the money is...... in the drugs that can be marketed to EVERYONE, not to a very rare disease that 99.9999% of the population will have no indication to ever use.
So yeah, it sucks, and it sucks worse when it really hits home and you find out someone hurt by the system, but if anyone has a good solution I would love to hear it. Because the money has to come from somewhere, you cant just say charge less.... it has to be able to pay for the research. So either you have expensive drugs.... or the government pays, and all the taxes go up until you cant make a living wage, and the same people hurt by drug prices are now hurt by milk prices that they cant afford.
On June 22 2011 11:40 Ichabod wrote: It takes ~$1 billion for a company to bring a drug to market, years of R&D, studies, and meeting FDA regulations.
When a drug is produced to treat a rare disease/condition, costs like these are unfortunate but expected.
Edit: (I assume costs to bring a drug to market is similar in Canada, but I'm less familiar with the specifics)
In the USA, the Gov't gives huge tax breaks and other incentives to companies who develop cures to diseases that affect a very small portion of the population. Entire companies devout their resources to finding these types of cures (e.g., Genzyme). On top of this I think the USA also set up some sort of subsidy program to help victims pay for their medical costs in these situations.
On June 22 2011 13:01 Sobba wrote: You cant set a price on life. I hope the goverment pays for his pills.
Prices are set on life all the time. American medicare denies treatments on spuius reasons all the time to save costs. 3rd world kids dont get vaccinated because of cost issues. A price is placed on life all the time.
I'm not saying its right but it happens. As you your friend, its a bad situation and I don't know the answer.
I agree with the people saying the best bet is to look outside of Canada, although he's clearly running very low on time. Because of the way economics works, the government can't easily just cover the costs for him, especially since it's 500k a year, and not just a flat price. It's going to take a miracle unfortunately. Best of luck to him.
Sadly this is the side effect of patent laws and costs of research. The good news is hopefully once the patent dies out and generic brands take over, it will be dirt cheap and the next generation will have a better chance =/
Ever think of trying some ancient Chinese herbal remedy? Keep his spirits up as best you can. Humans have adapted to many strange things, and keeping a positive outlook on life seems to help extend life.
Just charge it on a credit card, or ratheri n all seriousness.. Rob them and get the pills. If i was in his situation.. there is nothing i wouldn't do.
For these diseases, there are few if any other treatments. So biotech companies can charge pretty much whatever they want.
Alexion Pharmaceutical's Soliris, at $409,500 a year, is the world's single most expensive drug. This monoclonal antibody drug treats a rare disorder in which the immune system destroys red blood cells at night. The disorder, paroxysymal nocturnal hemoglobinuria (PNH), hits 8,000 Americans. Last year Soliris sales were $295 million. Since Alexion started selling Soliris two years ago, its stock price is up 130%.
Maybe try some alternative medicine, seek foreign citizenship, actively seek donations, lobby organizations, get further media attention. I think at this point where he doesn't have too long, you have to anything you can. I'm really sorry for your friend's situation, hope he can find a solution.
I just want to clarify, cause a lot of people think hes on his last legs. He still has a somewhat normal life while he is on this other medication (prescribed steroids to combat inflammation caused by his red blood cells exploding in his body). However being that it is a steroid it causes a lot of Hepatotoxicity so he can not remain on it forever(2 years is what the doctors say is the max time before he starts suffering from serious liver damage which would defeat the purpose of taking the drug) This treatment still isn't ideal for his disease as it comes with a lot of side-effects. So in the next year he needs to find a possible solution because hes already been on steroids for 1 year. hopefully the BC provincial government includes solaris in the budget.
On June 22 2011 14:43 Lowkin wrote: I just want to clarify, cause a lot of people think hes on his last legs. He still has a somewhat normal life while he is on this other medication (prescribed steroids to combat inflammation caused by his red blood cells exploding in his body). However being that it is a steroid it causes a lot of Hepatotoxicity so he can not remain on it forever(2 years is what the doctors say is the max time before he starts suffering from serious liver damage which would defeat the purpose of taking the drug) This treatment still isn't ideal for his disease as it comes with a lot of side-effects. So in the next year he needs to find a possible solution hopefully the BC provincial government includes solaris in the budget.
Do you think that will happen? Best to prepare for the worst.
For these diseases, there are few if any other treatments. So biotech companies can charge pretty much whatever they want.
Alexion Pharmaceutical's Soliris, at $409,500 a year, is the world's single most expensive drug. This monoclonal antibody drug treats a rare disorder in which the immune system destroys red blood cells at night. The disorder, paroxysymal nocturnal hemoglobinuria (PNH), hits 8,000 Americans. Last year Soliris sales were $295 million. Since Alexion started selling Soliris two years ago, its stock price is up 130%.
this is fucking disgusting
In their defense they have basically nothing else.
Bare in mind that due to limited patents the company has a short period where they need to raise enough revenue to cover both past and future costs. The don't earn anything until a new drug comes to market.
As for people saying you can't put a price on life. You do, every single day. If you ever get out of bed you are taking a risk, you just don't think about it. You go to work because you have to pay for stuff but this journey entails serious chances of you dying. They may be remote but you do onstensibly put a price on your life. It is just balanced with the probability of you having fatal accident. Something humans are notoriously bad at.
The government is Australia has an effective price of $50,000 AUD per quality life adjusted year. That means that if a drug can give you a standardised quality year for under $50,000 it will be reimbursed. This is not legislated but is the level that has been reached over the past 20 years. Politicians say that there is no set limit on the budget, but in reality there is an effective one. Any decision to fund one drug fundamentally takes money from other potential drugs. There is no way around it.
You can't have everything. You have to make a choice and to do so, you have to effectively put a price to someone's life. These are not easy decisions, but they are the right ones.
I wish medicinal research became open source once a definite cure for a disease became known, this way at least we have some attempt at an imitation cure. I dont rly no how medicine works at all but it seems to be more of a business then a social service....everything is a business...sigh money
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
Unfortunately pharmaceutical companies are businesses too. It costs literally billions of dollars to develop new drugs, and without reimbursement for them research couldn't move forward.
It costs literally billions of dollars to market/advertise for drugs. It is often universities that do the actual work.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
Unfortunately pharmaceutical companies are businesses too. It costs literally billions of dollars to develop new drugs, and without reimbursement for them research couldn't move forward.
It costs literally billions of dollars to market/advertise for drugs. It is often universities that do the actual work.
Not sure I follow your line of thought here. The expensive part of drug development is the clinical testing. This is normally orchestrated by the company. The monitoring, data collection and analysis is done in house. The actual treatments are done by doctors at hospitals but the institutions are reimbursed very well for this. Have a read.
In 2010, the average cost for bringing a drug to market was $1 billion USD.
You are correct in that universities often complete the mechanism research and provide a lot of direction for early drug development, but the main clinical work is subtantially organised by pharma. Even if the University/Hospitals are running the trials they are still funded by the company. At least this is true for the main registration trials. I know of no company that would outsource their most important trials to an outside institution.
In AUS pharma companies are not allowed to market their drugs and are heavily regulated. It depends on the environment. The US has almost no regulation when it comes to marketing drugs but you can hardly blame pharma companies for seeking whatever edge they can find. The argument goes that a well informed public can make better decisions. If you don't like this, then you need a change in regulations.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it.
It costs so much because only 8,000 Americans have that disease. It costed 800 million dollars and 15 years to research the drug.
Would he have been able to even get provate insurance? I thought they were allowed to refuse you?
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it.
It costs so much because only 8,000 Americans have that disease. It costed 800 million dollars and 15 years to research the drug.
Would he have been able to even get provate insurance? I thought they were allowed to refuse you?
They can deny you if you have preexisting conditions that they don't like. Oh, and there is no way in hell a private insurance organization would pony up half a million a year on one guy.
These pharmaceutical companies are robbing people blind. Charging people 500k a year just for them to survive is disgusting. It should be illegal just for these companies to exist. I guess this is the problem with capitalism. It's sad because few cases like this get media awareness, and although this man may eventually spawn enough media attention that he is able to receive the medical care he needs others wont. The treatment has already been researched, money has already been spent, this is just highway robbery.
On June 22 2011 18:45 Phayze wrote: These pharmaceutical companies are robbing people blind. Charging people 500k a year just for them to survive is disgusting. It should be illegal just for these companies to exist. I guess this is the problem with capitalism. It's sad because few cases like this get media awareness, and although this man may eventually spawn enough media attention that he is able to receive the medical care he needs others wont. The treatment has already been researched, money has already been spent, this is just highway robbery.
Brilliant post. Thanks for coming.
Here's the thing, we have all these do-gooders in the world, wanting everything to be free. It's health care, it should be for everyone. Yet not one of these people did the research to find this particular treatment. The only one that took the initiative was one of those evil pharmaceutical companies that should be illegal to exist, apparently. It was capitalism that found the cure for this, and after the years for the patent have passed, it will be readily available to everyone. Had this evil company not done the research, there would still be no drug after such time. Yep. Evil capitalism.
It sucks for the OP's friend. But in the grand scheme of things, capitalism and the companies willing to take the risk to invest in the R&D necessary to find these solutions are the reason a cure was found.
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
Who pays for it then?
We all do, we pay taxes. I'm glad some of my money can go to helping this guy, sounds like hell having this disease. It's also good to know that if I ever get something like this myself, at least I don't have to worry about the money part of it.
Charging half a million dollars a year for some pills is just plain ridiculous. The whole pharmaceutical system is fucked up. They can charge however much they want, people will pay any price not to die. If there is any industry that needs to be heavily regulated by the government, it's this one.
On June 22 2011 19:42 Khenra wrote: Charging half a million dollars a year for some pills is just plain ridiculous. The whole pharmaceutical system is fucked up. They can charge however much they want, people will pay any price not to die. If there is any industry that needs to be heavily regulated by the government, it's this one.
I love the irony in your post. The pharmaceutical business is extremely heavily regulated, that's why the drugs cost so much. The FDA puts these extreme requirements on the pharmaceutical company in regards to quality control, testing, side effects, blah blah blah, so that when the drug does go out to the public, it is well tested and controlled to adhere to the regulations of the FDA. So, the FDA forces these regulations on the pharmaceutical companies in order to pass a drug, so that when that drug finally passes they have to charge a ridiculous price in order to recoup all the costs associated with R&D of this drug.
All these posts of "OMG EVIL PHARMACEUTICAL COMPANIES ARE KILLING THIS MAN" are just replying solely on emotion. Of course it costs money to develop these cures, so don't they deserve to get paid?
And my favorite one was the post about how after they spend the time and money to develop this cure and test it, the pharmaceutical company should go out of business and it should be illegal for them to exist. That one was a real gem.
On June 22 2011 19:42 Khenra wrote: Charging half a million dollars a year for some pills is just plain ridiculous. The whole pharmaceutical system is fucked up. They can charge however much they want, people will pay any price not to die. If there is any industry that needs to be heavily regulated by the government, it's this one.
The reason for your so called fucked up pharmaceutrical system is because the industry is heavily regulated. And it's not that is a bad things, it actually helps keep bad/harmful drugs away from us, would you want a cold medcine that makes your balls drops right off? :p
how the fuck could developing/reaserching and getting this (and only this) thing approved cost billion of dollars? it only takes like 2-3 people, volunteers and ... time?
On June 22 2011 18:45 Phayze wrote: These pharmaceutical companies are robbing people blind. Charging people 500k a year just for them to survive is disgusting. It should be illegal just for these companies to exist. I guess this is the problem with capitalism. It's sad because few cases like this get media awareness, and although this man may eventually spawn enough media attention that he is able to receive the medical care he needs others wont. The treatment has already been researched, money has already been spent, this is just highway robbery.
Brilliant post. Thanks for coming.
Here's the thing, we have all these do-gooders in the world, wanting everything to be free. It's health care, it should be for everyone. Yet not one of these people did the research to find this particular treatment. The only one that took the initiative was one of those evil pharmaceutical companies that should be illegal to exist, apparently. It was capitalism that found the cure for this, and after the years for the patent have passed, it will be readily available to everyone. Had this evil company not done the research, there would still be no drug after such time. Yep. Evil capitalism.
It sucks for the OP's friend. But in the grand scheme of things, capitalism and the companies willing to take the risk to invest in the R&D necessary to find these solutions are the reason a cure was found.
Trying to find a cure for something just to make ridiculous amounts of money on sick people IS evil, even though it still helps the sick people, to a certain degree(if they can afford it...). This is at least +24 renegade in Mass Effect I know many researchers, both medical and technical (engineers), and they basically all agree that working in state-driven research facilities is A LOT better than in private companies, even though they get less paid. A friend of mine worked in a research facility in the US a year, and did research for something lung-related, and the facility got an offer from a tobacco company, that would give them a lot of money, if they could either try to hide the risks of smoking, or just say that smoking isn't bad at all. They didn't accept, since they were quite rich, but there are many poor facilities out there that depends on this kind of shit to be able to survive. After I heard this I haven't trusted american research(except from the universities/facilities that I know are rich enough to say no to these kind of things).
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
I highly doubt this treatment is covered in Norway, or anywhere for that matter. As in many countries with health insurance there is cap on what you pay per year, but that does not mean everything is covered. Actually a lot of treatments are not covered.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it.
All of it?
Don't fool yourself.
Especially since this is considered a "pre-existing condition", they would at the most pay for maybe half of it. No insurance company (AKA a business) would spit out 500k a year for some guy spending less than a fraction of that in his payments. Even here in America with perfect insurance he would be paying a shit ton out of pocket.
That sucks though OP.
Of course they won't cover pre existing conditions. The whole point of insurance is to buy it before he gets sick.
I would guess that not all plans cover this condition, and those that do would be rather expensive. So if they do not have good employer-provided insurance and since they do not know that he will have the condition (if they knew it would be preexisting condition) they would probably get a plan with insufficient coverage. And even if not, most reasonably priced plans have caps, so he would be fucked anyway considering the price tag. The only way for him to be better off would be to be rich or in a country with public healthcare that actually covers this treatment. But those are all ifs.
On June 22 2011 20:27 xM(Z wrote: how the fuck could developing/reaserching and getting this (and only this) thing approved cost billion of dollars? it only takes like 2-3 people, volunteers and ... time?
On June 22 2011 20:27 xM(Z wrote: how the fuck could developing/reaserching and getting this (and only this) thing approved cost billion of dollars? it only takes like 2-3 people, volunteers and ... time?
A lot more than that unfortunately. The amount of money put into research probably costs millions if not billions.
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
I highly doubt this treatment is covered in Norway, or anywhere for that matter. As in many countries with health insurance there is cap on what you pay per year, but that does not mean everything is covered. Actually a lot of treatments are not covered.
What is the alternative to private companies researching new pharmaceuticals and making money off their research? It's not like government owned companies have a great track record for success.
In healthcare lives do have a price as this article proves and as is praxis in every country. It's nessecary simply because there is no such thing as unlimited funds for health. I don't think the problem lies in the fact there exists a potential cure for the problem thanks to the pharmaceutical company that developed it and wouldn't have if not for monetary gain, but the problem lies with the healthcare system.
Anyway, on a large scale I think cuts need to be made in order to ensure that the most people survive for the budget allowed, but on a personal level it really sucks to be on the loosing end of it all. I would probably resort to something illegal either to get money or to steal the medicine directly.
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
I highly doubt this treatment is covered in Norway, or anywhere for that matter. As in many countries with health insurance there is cap on what you pay per year, but that does not mean everything is covered. Actually a lot of treatments are not covered.
This is true and the original poster is misinformed. If the drug costs are unreasonably high, it can break a hospital's or county's entire healthcare budget.
Usually in these cases it's up to the country's national board of health and welfare to make the ultimate decision on whether a certain unreasonably expensive drug should be subsidized or not. In this decision they have to weigh in the likely occurrence and prevalence of the disease throughout the population. If it's a rare disease that only 1, 2 or 3 people are likely to get in Norway, it'll be more likely to be approved.
Sweden has the same system as Norway, and still there have been cases where people were denied expensive drug treatments (especially if there are much much cheaper alternative treatments that unfortunately are less effective -- but still somewhat effective). They don't approve a rare and expensive treatment for 1 person if there are 100-200 other people with the same disease. They'd potentially break the healthcare budget if they did.
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
I highly doubt this treatment is covered in Norway, or anywhere for that matter. As in many countries with health insurance there is cap on what you pay per year, but that does not mean everything is covered. Actually a lot of treatments are not covered.
It is.
Sure about that? Sweden has a very similar system and you can't pay more than around that amount per year even for very expensive medication, and I think the medicine in question would be covered, but there are still exceptions.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
PNH is rare, with an annual rate of 1-2 cases per million.
[my note: that's maybe 6k/year out of 7 billion people on the planet, and that if the rate is calculated worldwide, with how many of those being statistically in Canada
this is a sad story no doubt, but there's how many thousands of people dying of incurable diseases all over the world every year ? of rare ones ? and how many more thousands dying of common ones ? or tens of thousands ?
this article does nothing more than vilify drug companies in view of weaker minds, on a case that's perfectly understandable. this is a very inadequate and perverse ad misericordiam approach to the argument of drug companies being greedy assholes, which is the implication.
and if there's an actual point being hinted at, it's this: the government needs to fund these drugs. really ? the government needs to fund the research then as well perhaps, since paying for a cure is paying for RD. and perhaps you'll be the one paying for a disease that affects 20-30 people a year in your entire half of a continent. while we're at it, why not let the government pay for even rarer diseases, the type of 1 in 100 million per year, it's the same principle. and then there's this whole people dying of 1 in 100 diseases in the world for want of medicine that's readily available to other parts of the world, omg, so many different, often contrasting principles, brain hurts!
it's cool to make an article that brings a million implications without actually making a point that can be debated or adopting either an emotional or argumentative stance, since you can skip bringing any research, evidence, or argument to the table, and you can just sit back and watch people get emotional.
sensationalist writing, a piece of crap article by any moderate journalistic standards feeding off the complexity of healthcare related issues and the grossly fallacious but intense argumentation thse subjects entail.
On June 22 2011 20:27 xM(Z wrote: how the fuck could developing/reaserching and getting this (and only this) thing approved cost billion of dollars? it only takes like 2-3 people, volunteers and ... time?
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
I highly doubt this treatment is covered in Norway, or anywhere for that matter. As in many countries with health insurance there is cap on what you pay per year, but that does not mean everything is covered. Actually a lot of treatments are not covered.
It is.
Are you sure, cannot really find anything to confirm or deny it, just that it is marketed in most of Europe, but possibly. Maybe you have some link to Norwegian set of covered treatments ?
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
I highly doubt this treatment is covered in Norway, or anywhere for that matter. As in many countries with health insurance there is cap on what you pay per year, but that does not mean everything is covered. Actually a lot of treatments are not covered.
It is.
Are you sure, cannot really find anything to confirm or deny it, just that it is marketed in most of Europe, but possibly. Maybe you have some link to Norwegian set of covered treatments ?
I have a friend with a muscular disease that is at least as expensive as this, and he only pay 300 dollars a year for his medicine. It's not the same disease, but its cost is the same, if not higher for my friend.
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
I highly doubt this treatment is covered in Norway, or anywhere for that matter. As in many countries with health insurance there is cap on what you pay per year, but that does not mean everything is covered. Actually a lot of treatments are not covered.
It is.
Are you sure, cannot really find anything to confirm or deny it, just that it is marketed in most of Europe, but possibly. Maybe you have some link to Norwegian set of covered treatments ?
I'm pretty sure we have a roof for how high the cost can be as well.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it.
It costs so much because only 8,000 Americans have that disease. It costed 800 million dollars and 15 years to research the drug.
if I was an insurance company, I would hire goons to figure out how to cause disease in the population. kachinnnnnggggggg
I just hate when these situations happen. A person should who cannot afford to survive by himself SHOULD get help from the government. That's what the government is for right? Protecting the mass and the individual.
But I do understand how this is a weird problem if it costs so much and is a very rare case. Hope your friend will somehow make ends meet... :/
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
I highly doubt this treatment is covered in Norway, or anywhere for that matter. As in many countries with health insurance there is cap on what you pay per year, but that does not mean everything is covered. Actually a lot of treatments are not covered.
It is.
Are you sure, cannot really find anything to confirm or deny it, just that it is marketed in most of Europe, but possibly. Maybe you have some link to Norwegian set of covered treatments ?
I'm pretty sure we have a roof for how high the cost can be as well.
Maybe, but at least the guy in the OP is under that roof
Edit: Maybe not if he moves to Norway just to get free healthcare though. I guess the government don't want people to do this.
Normally there are no "roofs" per person, BUT it has to be damn sure that the treatment is effective and improves the situation by a significant amount before anyone gets it. If there is doubt, well.... No Insurance/State/Whatever will pay for a Treatment as expensive as that. That is the real problem for the Health-Care institutions. In some cases this sounds really heartless but it's the only way to make "solid" rules for the whole health-care/insurance sector... Else suddenly anything would have to be paid just on the chance that it would work.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
Unfortunately pharmaceutical companies are businesses too. It costs literally billions of dollars to develop new drugs, and without reimbursement for them research couldn't move forward.
Attention readers, attention readers, number have just been pulled out of an *xxxrrchhchch*. Please resume discussion with facts only, I repeat: please resume discussion with facts only.
Would someone please change "drug" to "medicine" or "medication" in the thread title? It's misleading (especially when seen next to the Amy Winehouse thread).
I work in the pharma industry, helping to run clinical trials. Currently a japanese company is running a £300 million trial. These drugs aren't cheap to get onto the market, and for every one that makes it 20 have failed. Not trying to justify the pricing, but if you maybe understood the actual cost of getting a drug licensed. The cost will eventually drop, and im sad to hear about your friend and I hope he gets sorted out.
Sad, but such is life... maybe if we were a communistic society it would be different but alas people like money it seems.
The situation is the same in the UK, rare treatments are charged away from the NHS. This was highlighted fairly recently by Author Terry Pratchett who has a rare form of Alzheimers. Being a world renowned best selling author he can afford the treatment, but chose to speak out against it, because if he hadn't have been who he is, he'd have been denied the treatment. I won't go into how he's now crusading for Euthanasia etc but it's a topic that's recently been discussed widely in Britain to do with costs, and research money etc.
Capitalism makes me sick sometimes.. Like, sure, it may have cost ridiculous amount of time and resources to come up with the drug. But now IT'S THERE. You can simply save person's life if you give it to him. But you don't because he doesn't pay you money..
Yea, I know that's how world works (someone made a point about vaccinations not being given to people in 3rd world countries, for example, due to monetary reasons), but it's just depressing when you start thinking about it..
Blah, you might as well complain that farmers in America aren't donating their corn to starving ethiopian children, or even to the beggers on the streets.
As weird as it may sound, I would look into the "water cure." While I haven't done enough reading or research on the subject, I have heard of a few people who have adopted the program into their daily routines and have found that their general health has improved from it.
Even if your friend were to drink a good amount of water and not even worry about the salt intake (there is so much salt in foods now anyway), it may be something that could lead to better health. Who knows and I don't really see any downside to drinking a good amount of water other than going to the bathroom more than normal.
On June 22 2011 22:45 I_am_that_bad wrote: As weird as it may sound, I would look into the "water cure." While I haven't done enough reading or research on the subject, I have heard of a few people who have adopted the program into their daily routines and have found that their general health has improved from it.
Even if your friend were to drink a good amount of water and not even worry about the salt intake (there is so much salt in foods now anyway), it may be something that could lead to better health. Who knows and I don't really see any downside to drinking a good amount of water other than going to the bathroom more than normal.
Wow, that makes the $50k+ a year my meds and treatments run sound downright trivial, and I wouldn't be able to get those if I hadn't gotten medical retirement out of the military. That sucks indeed. As for prolonged massive doses of prednisone, that's not even fun, all the side effects get horrendous, even after just a few months. I can't imagine going as long as he has.
Some things that need to be done (some of which are from what I'm reading):
. See if there is a country that has a reciprocal health care agreement with Canada that funds Soliris (which is why your friend is trying to get UK citizenship if i read the thread properly?) . Get them on the global bone marrow transplant register as it seems this is the only cure. Bone marrow transplants are risky business and are horrific to go through however, so this needs to be weighed up heavily. Have their siblings tested for blood typing too. Siblings are the best chance of a blood match. . Lobby your local politicians and engage with Canadian PNH support groups
If the TL community wants to help, get your blood tested and list your self as a bone marrow donor. You will save lives! (I have a family experience with a bone marrow recipient, its such a worthwhile thing to do).
I'm so sorry to hear about your friend, its truly terrible, but I'm not sure what can be done.
I know its terrible to say that it shouldn't be paid for by the government, but the healthcare budget is not unlimited and $500k per year is an outrageous cost. I don't think the healthcare budget paying for it can be justified when you think about how many other lives can potentially be saved for that cost.
It really comes down to the drugs companies. They want to make money so will charge as much as they can, but if there is stronger regulation on prices they just won't develop drugs like this, because they don't think they can make a profit on them. The ball is just so far in the drug companies court. We all need the drugs companies to develop these new drugs (assuming we want to live longer) and because of that they can charge whatever they want.
The only thing to ease the overall problem I can think is an international agreement to tax the drugs companies more, and then invest that money back into funding research and lowering the costs of drugs. But that tax cost will probably come out of raising prices, so in the end would make no difference.
Again, I'm so sorry so hear about your friend. I hope somehow it works out for him. Your best bet is probably to raise awareness, possibly by creating a short film or something that can get a lot of exposure easily.
This the problem guys . I understand that the companies have to make money... but with such a high cost only 1 thing can be done.. He obviously can't pay that , and so does the goverment. Because if the gov. pays for him , other people are going to complain. So if something does happen . it must happen without the media or internet knowing about it. He must go to the company , explain the situation and hope they will help him.
On June 22 2011 11:31 Voltaire wrote: I thought Canada had universal healthcare? Or is this friend in the US?
We do, but what most from outside Canada don't realise is the system makes the yes/no decision to treatment, particularly experimental or in this case absurdly expensive to the point the manufacturer should be ashamed. It isn't a free-for-call get whatever you want and changes need to be made for it to continue to hold up financially.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it.
All of it?
Don't fool yourself.
Especially since this is considered a "pre-existing condition", they would at the most pay for maybe half of it. No insurance company (AKA a business) would spit out 500k a year for some guy spending less than a fraction of that in his payments. Even here in America with perfect insurance he would be paying a shit ton out of pocket.
That sucks though OP.
Sorry but this is a load of BS.
Spitting out huge sums of money to people that pay a fraction of it in premiums is exactly what insurance companies do. That's like the "definition" of insurance.
For example, my brother has an illness that requires him to get treatment multiple times a year. Each treatment costs $15,000-$20,000. My parent's pay a 1 time $300 deductible per year and after that it's entirely free. Maybe $300/year is a "shit ton" out of pocket to you but I think that's a pretty good price.
On June 22 2011 12:03 Wombatsavior wrote: This reminds me of Dr. Burzynksi incident thats been on going for a good 20-30 years now or so. It's about the FDA's war against his different cure for cancer that does work. They try to throw him in prison while at the sametime approving him for clinical trials, but now there's a long full length documentary showing his side of the story. They were showing the full length up to June 20th. + Show Spoiler +
The first 30 minutes is only about the medicine itself, the other hour and a half is about the national cancer institute, medical board of texas, FDA, and finally Phrma, trying to stop him every way possible.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it.
All of it?
Don't fool yourself.
Especially since this is considered a "pre-existing condition", they would at the most pay for maybe half of it. No insurance company (AKA a business) would spit out 500k a year for some guy spending less than a fraction of that in his payments. Even here in America with perfect insurance he would be paying a shit ton out of pocket.
That sucks though OP.
Sorry but this is a load of BS.
Spitting out huge sums of money to people that pay a fraction of it in premiums is exactly what insurance companies do. That's like the "definition" of insurance.
For example, my brother has an illness that requires him to get treatment multiple times a year. Each treatment costs $15,000-$20,000. My parent's pay a 1 time $300 deductible per year and after that it's entirely free. Maybe $300/year is a "shit ton" out of pocket to you but I think that's a pretty good price.
The insurance companies aren't going to insure someone for $300 per year if they know that they will be paying $500,000 per year for their treatment, which would be the case here since its pre-existing condition. They don't want to help you, they want to make money. When they sell insurance they want you to pay for it, and then never need it. Effectively they are gambling on you staying healthy, which would be better than a company hoping you get sick like the drug companies, except when you do get sick, they are going to try and worm their way out of paying, which would probably happen here even if it wasn't pre-existing.
The "slip through the cracks" bit is systemic. The universal health care system refuses coverage for nearly all expensive treatment options and certainly won't invent a treatment that doesn't exist.
The death sentence is the disease not the cost of the treatment. The expensive drug treatment at least offers some hope for those with plenty of money. The drug companies are clearly targeting the extremely wealthy in the niche market as they recoup their research and clinical trial investments.
Per the online article, the treatment wasn't even available on the market two years ago and the disease was considered terminal. One option is to pretend that the expensive treatment never existed and go on thinking of the disease as terminal. The other option is to raise the money.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it.
All of it?
Don't fool yourself.
Especially since this is considered a "pre-existing condition", they would at the most pay for maybe half of it. No insurance company (AKA a business) would spit out 500k a year for some guy spending less than a fraction of that in his payments. Even here in America with perfect insurance he would be paying a shit ton out of pocket.
That sucks though OP.
Sorry but this is a load of BS.
Spitting out huge sums of money to people that pay a fraction of it in premiums is exactly what insurance companies do. That's like the "definition" of insurance.
For example, my brother has an illness that requires him to get treatment multiple times a year. Each treatment costs $15,000-$20,000. My parent's pay a 1 time $300 deductible per year and after that it's entirely free. Maybe $300/year is a "shit ton" out of pocket to you but I think that's a pretty good price.
The insurance companies aren't going to insure someone for $300 per year if they know that they will be paying $500,000 per year for their treatment, which would be the case here since its pre-existing condition. They don't want to help you, they want to make money. When they sell insurance they want you to pay for it, and then never need it. Effectively they are gambling on you staying healthy, which would be better than a company hoping you get sick like the drug companies, except when you do get sick, they are going to try and worm their way out of paying, which would probably happen here even if it wasn't pre-existing.
His parents aren't only paying $300 a year. That is just the deductible. They will pay a monthly charge (bi-weekly, monthly, whatever) as well. It really depends on when you got your insurance to when you become ill. Being on an employer plan, I pay my fees directly from my checks then my deductible (if needed) and the rest is covered up to $1 million. If I had the condition and then tried to get insurance, through an individual plan, it is a different story.
Home and car insurers take the same gamble as health insurers. They have you pay a fee for protection and hope that nothing happens.
On June 23 2011 00:21 Mottz wrote: He should make his story public, like world wide, get connection with some tv stations and spread the word.
In order to make some pressure on the pharmacuticals(probly misstyped)
This, not to make pressure on pharmaceuticals, it won't work. But goverments always like to show a good image and thus somebody could pay it for him. I think it's his best option. Show himself on TV and hope an angel falls from heaven.
I don't blame companies though, developing a drug costs bilions of dollars and they ahve to make profit from somewhere.
On June 22 2011 12:03 Wombatsavior wrote: This reminds me of Dr. Burzynksi incident thats been on going for a good 20-30 years now or so. It's about the FDA's war against his different cure for cancer that does work. They try to throw him in prison while at the sametime approving him for clinical trials, but now there's a long full length documentary showing his side of the story. They were showing the full length up to June 20th. + Show Spoiler +
The first 30 minutes is only about the medicine itself, the other hour and a half is about the national cancer institute, medical board of texas, FDA, and finally Phrma, trying to stop him every way possible.
I agree. I'm sure there are plenty of worthless miracle drugs and treatments out there that can be bought much cheaper from non-certified or persons that spend less money on hour-long advertisements.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
The scientists who develop the cures aren't in it for the money. 99% of the time it's a government job, where they are paid a fixed rate in line with other government employees of similar rank. In the US most cures are found by the NIH, 27 federal health organizations, where the highest paid researchers earn about 100K a year, despite being the people most likely to cure cancer, and other big named diseases.
Pharmaceutical companies, AKA the Devil to most doctors and scientists, are the ones who make the cost of living so damned expensive.
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
Who pays for it then?
Tax-money. It's the same in Denmark.
But yeah, TL;DR to read every single post, but isn't there some where (il)legal or not? It's a life, for Christ sake.
Also; Facebook, twitter, anything. I'd gladly throw along a message on facebook for people to join it - the bigger the facebook group is (as long as it's actually something worth supporting), the more publicity it gets.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
If that guy was an American and he bought insurance the insurance would cover it. The problem is that the Canadian government won't cover it.
All of it?
Don't fool yourself.
Especially since this is considered a "pre-existing condition", they would at the most pay for maybe half of it. No insurance company (AKA a business) would spit out 500k a year for some guy spending less than a fraction of that in his payments. Even here in America with perfect insurance he would be paying a shit ton out of pocket.
That sucks though OP.
Sorry but this is a load of BS.
Spitting out huge sums of money to people that pay a fraction of it in premiums is exactly what insurance companies do. That's like the "definition" of insurance.
For example, my brother has an illness that requires him to get treatment multiple times a year. Each treatment costs $15,000-$20,000. My parent's pay a 1 time $300 deductible per year and after that it's entirely free. Maybe $300/year is a "shit ton" out of pocket to you but I think that's a pretty good price.
The insurance companies aren't going to insure someone for $300 per year if they know that they will be paying $500,000 per year for their treatment, which would be the case here since its pre-existing condition. They don't want to help you, they want to make money. When they sell insurance they want you to pay for it, and then never need it. Effectively they are gambling on you staying healthy, which would be better than a company hoping you get sick like the drug companies, except when you do get sick, they are going to try and worm their way out of paying, which would probably happen here even if it wasn't pre-existing.
Well of course he can't just come to the states and buy insurance and have it covered. He couldn't do that in any country. But if he were born in the states we would have no idea what his situation would be and whether his insurance would cover it or if he we would even have insurance. But saying perfect insurance would at most pay for half of the treatment is patently false. In fact one source I read said that some Canadians are able to get the treatment and that is because they had private insurance.
On June 23 2011 01:35 BlackJack wrote: But saying perfect insurance would at most pay for half of the treatment is patently false. In fact one source I read said that some Canadians are able to get the treatment and that is because they had private insurance.
Bingo. Canadians generally have to pay for their prescription drugs, as it's most often not in their provincial health insurance (there are exceptions, hence the wishy-washy language).
It's not like Canadians don't pay for private medical insurance, we do. It's just that the private insurance covers supplementals like (most) prescription drugs, eyeglasses and dental.
$500,000 a year is absurd. It's so depressing to hear about your friend, and I hope he can somehow find a way to pay for the drug, but I think it would be more plausible for the government to just lower the cost of the drug.
Reminds me of the Man Robs Bank to get Healthcare thread.
Sometimes I question: 500k a year, is the drug manufacturer nuts? No one without insurance (even if they have, it may exceed the limit by a ton) will be able to pay for that.
Fund raising is not necessary the answer: there are a surprising amount of people who cannot afford the best treatment for themselves because of $. No fund raising effort can satisfy them all.
Sad to say, death awaits us all. If you are unlucky, it comes sooner. There is little we can do beside to try to enjoy it.
I wonder if your friend can appeal to the drug manufacturer for a discount?
Unfortunately in the current state of the world anything which involves health also involves a lot of money. Med school cost money, getting treated cost money, developing drugs cost money...
On June 23 2011 02:04 Hikari wrote: Reminds me of the Man Robs Bank to get Healthcare thread.
Sometimes I question: 500k a year, is the drug manufacturer nuts? No one without insurance (even if they have, it may exceed the limit by a ton) will be able to pay for that.
Fund raising is not necessary the answer: there are a surprising amount of people who cannot afford the best treatment for themselves because of $. No fund raising effort can satisfy them all.
Sad to say, death awaits us all. If you are unlucky, it comes sooner. There is little we can do beside to try to enjoy it.
I wonder if your friend can appeal to the drug manufacturer for a discount?
Unfortunately in the current state of the world anything which involves health also involves a lot of money. Med school cost money, getting treated cost money, developing drugs cost money...
IIRC, it's a treatment you receive every two weeks, and an expensive procedure. That's why it comes down to 500k a year.
It is very sad indeed that the cure is there, it is just very expensive. But we have to put things like this in perspective. One hundred years ago your friend would probably already be dead. One hundred years from now he would probably be able to afford the medicine. It is truly sad that he was the one born in the space of time so tantalizingly between existence of the cure and affordability, but as a race humanity has done an extraordinary job of curing diseases and extending lives.
The pharmaceutical companies have had a huge role in this process, and tons of their profits are put right back into future research and development. I dare say if the government regulated profits of these companies they would make drugs more affordable now, but less existent in the future (drugs that would exist under current laws would never be developed), causing more pain.
It seems silly that in a company that develops drugs the officers (CEO, CFO, etc) should earn millions of dollars, but they are valued for their ability to place resources in the right places. If the difference between a CEO making $1,000,000 and a CEO making $100,000 is the difference between a drug that saves 100,000 lives and a drug that saves 10,000 lives being invented, are those lives not worth $10 each? Obviously this is a gross oversimplification, but it is what the market is saying. In a multi-billion dollar industry the ability to distribute resources efficiently is a skill that can easily be worth millions of dollars to a company.
The basic "problem" is that there needs to be a way for companies to recoup their R&D, but we also don't like monopoly pricing. One solution I have seen is to have the government purchase the patent for fair-market value after the pharma company completes all testing. Fair-market value can be calculated by having competing pharma companies bid for the patent, and the government can simply say, "there is a 90% chance we will buy it" in order to incentivize the bidders to do their due diligence. Then the government just releases it into the public domain.
On June 23 2011 02:04 Hikari wrote: Reminds me of the Man Robs Bank to get Healthcare thread.
Sometimes I question: 500k a year, is the drug manufacturer nuts? No one without insurance (even if they have, it may exceed the limit by a ton) will be able to pay for that.
Fund raising is not necessary the answer: there are a surprising amount of people who cannot afford the best treatment for themselves because of $. No fund raising effort can satisfy them all.
Sad to say, death awaits us all. If you are unlucky, it comes sooner. There is little we can do beside to try to enjoy it.
I wonder if your friend can appeal to the drug manufacturer for a discount?
Unfortunately in the current state of the world anything which involves health also involves a lot of money. Med school cost money, getting treated cost money, developing drugs cost money...
IIRC, it's a treatment you receive every two weeks, and an expensive procedure. That's why it comes down to 500k a year.
How many households makes 500k a year? How many parents buy medical insurance for their children that covers a 500k/year treatment? When they labelled the price tag on the drug did they make it reasonable? "Lets pray a billionaire out there gets sick enough to buy our drug so we can start making money!"
On June 23 2011 02:04 Hikari wrote: Reminds me of the Man Robs Bank to get Healthcare thread.
Sometimes I question: 500k a year, is the drug manufacturer nuts? No one without insurance (even if they have, it may exceed the limit by a ton) will be able to pay for that.
Fund raising is not necessary the answer: there are a surprising amount of people who cannot afford the best treatment for themselves because of $. No fund raising effort can satisfy them all.
Sad to say, death awaits us all. If you are unlucky, it comes sooner. There is little we can do beside to try to enjoy it.
I wonder if your friend can appeal to the drug manufacturer for a discount?
Unfortunately in the current state of the world anything which involves health also involves a lot of money. Med school cost money, getting treated cost money, developing drugs cost money...
IIRC, it's a treatment you receive every two weeks, and an expensive procedure. That's why it comes down to 500k a year.
How many households makes 500k a year? How many parents buy medical insurance for their children that covers a 500k/year treatment? When they labelled the price tag on the drug did they make it reasonable? "Lets pray a billionaire out there gets sick enough to buy our drug so we can start making money!"
Well they made $260 million last year in profits so they must have some idea what they are doing as far as pricing goes
The civil thing to do would be lower the price and hope it's worth it over time, even if it's a long time. People are too greedy though, so that would never happen. It's sickening.
it's certainly unfortunate but the medical industry cannot accomodate every type of illness present in the world, it's simply not viable. From a economic standpoint, as well as a scientific standpoint with respect to opportunity cost.
It takes years and years and hundreds of millions of dollars to produce a viable drug. Many of you don't seem to understand the magnitude of saying "why not just give it to him, that company's a jerk". Is it any different than asking adobe or microsoft to release their software for free? Not really. You might try to argue with sentimentality that the drug decision involves the life of another human but is that something you can say so simply? Given that it comes from tax dollars, what if we approached your household tomorrow and said "from now on, pay an additional fee X every month because 1 person out of 33 million in a country has a rare illness". I realize this may come across as extremely heartless to many but its simply not practical.
To further exemplify, a leading concern in the field of medical philosophy is the constant medicalization of "diseases". I say that with quotations because presently, obesity is treated as a "disease". The traditional definition of disease requires a pathogenic mechanism yet obesity is largely in part due to the decline of daily fitness and abuse of diet. That said, diabetes isn't technically a disease either. The human diet is still based on meat, nuts, tubers, fruits. The introduction of agriculture exponentially increased grain intake -> sugar intake. But this change happened to fast, and the bodies were unable to keep up -> diabetes. Now given the widespread prevalence of the above (especially in the US), what constitutes more importance in the expenditure of 1, 000, 000, 000 dollars.
To OP; i'm afraid the most your friend can do is to lobby with health companies although i truthfully do not see much reason why the companies would sponsor your friend. I'm sorry to hear about his situation.
On June 23 2011 03:39 Kenderson wrote: The civil thing to do would be lower the price and hope it's worth it over time, even if it's a long time. People are too greedy though, so that would never happen. It's sickening.
There's a lot of R&D cost that goes into developing these drugs and administer them...money goes back into R&D for other projects
On June 23 2011 03:48 Drock wrote: This is what happens when drug companies are allowed to be for profit. Honestly I think the huge drug companies are among the sleaziest in the world.
Specifically that cures to rare diseases are found and a few years later, they are readily available to everyone ? Yeah, I agree. Not with the second sentence though.
i dont really get it. Dont you have a public health system in canada?
in germany if its proven that it will help him his insurance have to pay for it. if its 500k or 500 million a year.... and if he is not in a private health insurance he is in the state health insurance and this one has to pay.
If there is not enough proof that this medicine will help they can deny the payment. in this case you have to go to curt.
EDIT: we are not living in a dreamworld. yes its fucking expensive to have such a system and yes its worth it....
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
Nice that you actually believe that, but unfortunately you live in a fairytail world with rainbows and pink unicorns. If you got this illness you would most likely not get any treatment at all.
On June 23 2011 03:39 Kenderson wrote: The civil thing to do would be lower the price and hope it's worth it over time, even if it's a long time. People are too greedy though, so that would never happen. It's sickening.
You think it's cheap to develop these drugs? Well literally 3 seconds on google gave me this: Estimates about the cost of developing a new drug vary widely, from a low of $800 million to nearly $2 billion per drug. (http://www.america.gov/st/econ-english/2008/April/20080429230904myleen0.5233981.html). A drug for an extremely rare condition is going to cost A LOT because of the small pool of potential customers. Add to the fact that somewhere down that LONG TIME you're banking on, a new more effective drug could come out and obsolete that drug.
Don't worry though, I'm sure with your marvelous, sustainable business model they'll be able to save literally tens of people before they bankrupt themselves, their employees, and the company. What's sickening is your ignorance.
I think people are taking the stance "if not everybody can have it then nobody should have it" without even realizing that is the stance they are taking. Nobody is going to sink a billion dollars into developing a drug so that they can give it away for cheap. Stop dreaming.
When they put the pricetag at $500.000 do they really expect to sell the drug? i mean if this is a very rare condition, what are the odds of having this condition + being a millionaire?
On June 23 2011 04:14 Pulimuli wrote: When they put the pricetag at $500.000 do they really expect to sell the drug? i mean if this is a very rare condition, what are the odds of having this condition + being a millionaire?
Not very high i would guess.
They probably also negotiate with people and try their best to work something. But the answer is probably no, as they intend to make most of their money from insurance companies/governments instead of selling it to individuals. They've had $260 million in sales in 1 year so it appears to be getting sold.
People should be glad that there are companies willing to sink a billion dollars in to research before seeing a single cent back so that at least these drugs exist. Having these drugs exist paves the way for research in to making these drugs more affordable and efficient.
I really find the people complaining about high costs amusing as everything we have today at one point was considered exorbitant and unaffordable by 99.9% of the population. Maybe you should disparage the guy that invented fire (what? you want a bushel of berries to teach me how to build a fire? stop robbing everybody).
I don't know how things work in Canada, but in the U.S. the state grants a lot of that R&D money though the companies tally it as their expenditures. Pharmaceuticals aren't exactly scraping by as an industry here, at least. $500k/year is absolutely ludicrous, there's no question about that. I'm really sorry to hear about your friend's situation. I'm hard pressed to believe that greed isn't the reason for that outrageous price.
On June 23 2011 04:20 lixlix wrote: People should be glad that there are companies willing to sink a billion dollars in to research before seeing a single cent back so that at least these drugs exist. Having these drugs exist paves the way for research in to making these drugs more affordable and efficient.
I really find the people complaining about high costs amusing as everything we have today at one point was considered exorbitant and unaffordable by 99.9% of the population. Maybe you should disparage the guy that invented fire (what? you want a bushel of berries to teach me how to build a fire? stop robbing everybody).
It must be so painful for them to sink all that money in, and then make huge profits out of that.
That money to spend on living ridiculous this is yet another example of companies that just care about the money, not considering the LIFE of a human being. I really hope your friend can pull through, make sure he stays positive, and if he is that's half the battle won.
On June 23 2011 04:42 Frequencyy wrote: That money to spend on living ridiculous this is yet another example of companies that just care about the money, not considering the LIFE of a human being. I really hope your friend can pull through, make sure he stays positive, and if he is that's half the battle won.
If they catered to everyone, these companies wouldn't exist and the drugs would not be developed... and many more people would not be saved...
On June 23 2011 04:45 Baarn wrote: It's too bad drug companies don't have to conform to Duty to Rescue.
If they did then they would simply stop doing research on all rare conditions and only develop drugs likely to turn a huge profit, and that's if they don't simply go out of business. Your bleeding-heart view doesn't look very far.
Firstly I want to say I am truly sorry for your friend and I extend my heartfelt wishes to him and his family.
I work for a pharmaceutical company based in Argentina, but we only cater to international markets (currently none of our drugs are commercialized in Argentina). I received my education and training in the U.S. for FDA regulated markets (highest standard of regulation in Pharma), in consequence I feel qualified to speak on this particular matter.
The problem in these situations are not the pharmaceutical companies but the government and the health insurance providers who want to maximize profits by leaving people with fringe conditions with no coverage. The government in this respect sometimes provides funding for research on "Orphan drugs" (drugs with no real commercial potential) in addition to providing a fast track for the approval and registration of these drugs in order to speed them from the bench to the market.
Everybody likes to point the finger at big pharma saying that they are greedy, but the truth of the matter is it takes billions and billions of dollars to run a large pharmaceutical companies. As has been mentioned, the cost of R&D is astronomical. Acquiring new IP in order to successfully bring it to the market is also incredibly costly. Without big pharma, we would not have drugs that save millions of lives yearly like Atorvastatin (Lipitor), because they simply cost too much money to develop. Moreover, you are not taking into consideration the millions of dollars in sunken costs when a drug fails FDA approval, which trust me, is unbelivably stringent.
The real problem in the U.S. is the health insurance system that effectively leaves the poor without the possibility to get even the most basic assistance, which is unacceptable.
On June 23 2011 04:20 lixlix wrote: People should be glad that there are companies willing to sink a billion dollars in to research before seeing a single cent back so that at least these drugs exist. Having these drugs exist paves the way for research in to making these drugs more affordable and efficient.
I really find the people complaining about high costs amusing as everything we have today at one point was considered exorbitant and unaffordable by 99.9% of the population. Maybe you should disparage the guy that invented fire (what? you want a bushel of berries to teach me how to build a fire? stop robbing everybody).
It must be so painful for them to sink all that money in, and then make huge profits out of that.
thats it? thats your only reply? you understand profits are not guaranteed or that companies can run out of money, go bankrupt before a product is developed. Drugs fail all the time in the testing phase or fail FDA tests which lasts several years.
You obviously missed the point of my post. Somebody needs to go invent these drugs and the best incentive is profit. The best incentive for any innovation or risk taking is profit.
On June 23 2011 04:45 Baarn wrote: It's too bad drug companies don't have to conform to Duty to Rescue.
If they did then they would simply stop doing research on all rare conditions and only develop drugs likely to turn a huge profit, and that's if they don't simply go out of business. Your bleeding-heart view doesn't look very far.
Research wouldn't stop and drug companies already develop drug to make huge profits. Read the OP. No bleeding heart man. This price is just unreasonable.
To all those who blame capitalism and "greedy corporations": Are you retarded? Have you spent even a single minute thinking about what would happen if you forced pharmaceuticals to sell drugs below price, making all investments in drug research and development a definite loss?
On June 23 2011 01:22 Selkie wrote: Yes, but look at it this way- if a drug is so expensive noone can afford it, then they can make none of their money back. Supply and demand curves. These companies need to hire an economist =D
Yeah, it would be interesting to know what were they thinking when they came up with the price tag, or why did they even start developing the drug. They might have miscalculated it, or the drug might be the byproduct of some other research.
On June 23 2011 04:45 Baarn wrote: It's too bad drug companies don't have to conform to Duty to Rescue.
If they did then they would simply stop doing research on all rare conditions and only develop drugs likely to turn a huge profit, and that's if they don't simply go out of business. Your bleeding-heart view doesn't look very far.
On June 22 2011 11:35 Kamais_Ookin wrote: What's the point of a cure if pretty much 99% of the people can't afford it? I understand profits and stuff but come on now...
Unfortunately pharmaceutical companies are businesses too. It costs literally billions of dollars to develop new drugs, and without reimbursement for them research couldn't move forward.
Yeah but those guys make way too much money. I understand it takes excellent minds to develop this stuff but commanding 7 figure salaries for executive types, not even the researchers, and asking for more is a tad ridiculous.
This seriously sucks for your friend. My condolences.
At what point do we step back and look at how far we've come in fighting disease? Are diseases natural population limiters that exist to keep people from exceeding the Earth's carrying capacity? Is it worth prolonging one life at the cost of $500,000 / yr or to prolong the lives of many in malnourished and poverty-stricken nations that can't afford basic medicines like antibiotics or antivirals for malaria,TB, etc.? I don't know the answers but these are just some questions that come to mind thinking about this whole situation.
On June 23 2011 04:42 Frequencyy wrote: That money to spend on living ridiculous this is yet another example of companies that just care about the money, not considering the LIFE of a human being. I really hope your friend can pull through, make sure he stays positive, and if he is that's half the battle won.
Why don't you go kick your friends studying chemistry/biology/pharm in the balls repeatedly then? You should also laugh and ridicule them for pursuing a profession that would barely pay more than a McDonald's job if the world worked the way you're stating.
Now time for a reality check on companies doing it "for the money (oooooh so scarrry)":
New drugs can take anywhere from two to a dozen years to get on the market. Also, people saying it costs roughly $800 million are being generous. Try $1.8 billion for a more realistic estimate. That's money spent to make sure the proposed drug actually does something about a disease and to make sure it doesn't flat out kill you 3 years later. Think about that next time you're getting your prescription drug. Also consider that for every 1 drug that has made it to market, 10000 additional ones have failed. And for every 3 drugs that make it to market, 1 actually sells well enough to make a profitable return. What do companies do with their profits? Invest in future R&D projects to create better drugs.
Okay, damn. That's sooooooooo much money and time that has to go nowhere before those companies start seeing any of it back.
You're saying they should stop caring about the money and on prioritizing people's lives. Well, sorry. It can't happen. If things work out the way you want it to, you're robbing from the people who spent endless years in med school hell and read more textbooks than you will read novels your entire life. Sure, they're working for private firms, but they are still doing the world a public service by discovering these miracle drugs. But if the companies don't get the money, guess what? They go bankrupt. The hard workers go unemployed and live miserably. And ultimately, R&D halts and down the years, 200,000 more people are condemned to die terribly because the proper drug couldn't cure them in time.
Look, I feel for the guy just as much as everyone else (I hope) does. Be supportive for him, but don't be ignorant and start blindly bashing pharmaceutical corporations because of his plight.
On June 23 2011 04:42 Frequencyy wrote: That money to spend on living ridiculous this is yet another example of companies that just care about the money, not considering the LIFE of a human being. I really hope your friend can pull through, make sure he stays positive, and if he is that's half the battle won.
the life of 1 creature out of over 6 billion. The company has a cost to manufacture things... they can't just give half a million dollars of resources away to someone for free...
Even if someone would pay that 500,000 per year, no way would I accept it if I was in his shoes— you can do a lit of things with that kind of money, and it's essentially just throwing it away to improve a one in 30 million/500 million/6 billion (depending how you look at it) person's life.
On June 23 2011 04:45 Baarn wrote: It's too bad drug companies don't have to conform to Duty to Rescue.
If they did then they would simply stop doing research on all rare conditions and only develop drugs likely to turn a huge profit, and that's if they don't simply go out of business. Your bleeding-heart view doesn't look very far.
What exactly does your link prove? That it's cheap to discover any medical treatment because somehow we'll always get lucky that some randomly growing fungus will have medical treatment properties?
I think the fact that pharma companies spend billions in R&D is enough proof that developing drugs costs a lot of money.
On June 22 2011 13:18 Reignyo wrote: The drug companies can't jsut hand out cheap drugs, theyre a business.
Why is that the case? It makes no sense to have a system in charge of caring for and healing people be focused purely on profit. If the object of a drug company is profit, then the best course of action is to make as much as possible by treating as few people as possible, at the largest price.
On June 22 2011 13:18 Reignyo wrote: The drug companies can't jsut hand out cheap drugs, theyre a business.
Why is that the case? It makes no sense to have a system in charge of caring for and healing people be focused purely on profit. If the object of a drug company is profit, then the best course of action is to make as much as possible by treating as few people as possible, at the largest price.
On June 22 2011 13:18 Reignyo wrote: The drug companies can't jsut hand out cheap drugs, theyre a business.
Why is that the case? It makes no sense to have a system in charge of caring for and healing people be focused purely on profit. If the object of a drug company is profit, then the best course of action is to make as much as possible by treating as few people as possible, at the largest price.
Do you seriously think the guy who starts a pharma company wants to save the world, or heal every problem every person has?? He could be making a lot of money in any other field, so it's reasonable of him to want to make money in his field.
EDIT: what I'm trying to say is: The drug companie's system is NOT a system created to care for and heal people, it's a system created to make money. Caring and healing is only the product they offer you in exchange of your money,
I'm a bit surprised with the price. If they priced it at 50k a year they'd need to sell about 10 times as much of it(assuming R&D dominates production cost). And that doesn't sound unlikely to me. More insurances will cover it for that cost, and more people will be able to pay it themselves.
On June 23 2011 04:42 Frequencyy wrote: That money to spend on living ridiculous this is yet another example of companies that just care about the money, not considering the LIFE of a human being. I really hope your friend can pull through, make sure he stays positive, and if he is that's half the battle won.
Why don't you go kick your friends studying chemistry/biology/pharm in the balls repeatedly then? You should also laugh and ridicule them for pursuing a profession that would barely pay more than a McDonald's job if the world worked the way you're stating.
Now time for a reality check on companies doing it "for the money (oooooh so scarrry)":
New drugs can take anywhere from two to a dozen years to get on the market. Also, people saying it costs roughly $800 million are being generous. Try $1.8 billion for a more realistic estimate. That's money spent to make sure the proposed drug actually does something about a disease and to make sure it doesn't flat out kill you 3 years later. Think about that next time you're getting your prescription drug. Also consider that for every 1 drug that has made it to market, 10000 additional ones have failed. And for every 3 drugs that make it to market, 1 actually sells well enough to make a profitable return. What do companies do with their profits? Invest in future R&D projects to create better drugs.
Okay, damn. That's sooooooooo much money and time that has to go nowhere before those companies start seeing any of it back.
You're saying they should stop caring about the money and on prioritizing people's lives. Well, sorry. It can't happen. If things work out the way you want it to, you're robbing from the people who spent endless years in med school hell and read more textbooks than you will read novels your entire life. Sure, they're working for private firms, but they are still doing the world a public service by discovering these miracle drugs. But if the companies don't get the money, guess what? They go bankrupt. The hard workers go unemployed and live miserably. And ultimately, R&D halts and down the years, 200,000 more people are condemned to die terribly because the proper drug couldn't cure them in time.
Look, I feel for the guy just as much as everyone else (I hope) does. Be supportive for him, but don't be ignorant and start blindly bashing pharmaceutical corporations because of his plight.
This is 100% correct. Having done research on the topic and having parents who work in the Orphan Drug industry, there are essentially 2 options: (1) charge a ton of money for these drugs or (2) don't have these drugs at all. You can alleviate the price by government intervention, but basically no one will do pharmaceutical research if they cannot recoup the cost. Also consider that the patent side of the equation 2; the drug will only be that expensive for the next 20 years or so (if no patent protection then under ODA then market exclusivity is 10 years), after which generics can come in and severely undercut the price.
On June 23 2011 04:45 Baarn wrote: It's too bad drug companies don't have to conform to Duty to Rescue.
If they did then they would simply stop doing research on all rare conditions and only develop drugs likely to turn a huge profit, and that's if they don't simply go out of business. Your bleeding-heart view doesn't look very far.
What exactly does your link prove? That it's cheap to discover any medical treatment because somehow we'll always get lucky that some randomly growing fungus will have medical treatment properties?
I think the fact that pharma companies spend billions in R&D is enough proof that developing drugs costs a lot of money.
That link in fact proves the opposite. If he had looked at the timeline, he would realize that it took a collaborative effort between multiple companies and scientists 24 years to go from Fleming's discovery of the properties of penicillin to the development of a drug.
That link also says nothing about the costs of development nor how much penicillin sold for when it was first on the market.
So you just need to get 50,000 people to donate him $10 a year. Perhaps not even that much. Would the Canadian healthcare at the very least partially subsidize the cost, or is it $500,000 after a subsidization?
On June 23 2011 06:43 MasterOfChaos wrote: I'm a bit surprised with the price. If they priced it at 50k a year they'd need to sell about 10 times as much of it(assuming R&D dominates production cost). And that doesn't sound unlikely to me. More insurances will cover it for that cost, and more people will be able to pay it themselves.
Perhaps they will do both. Kind of like when they come out with the new technology and it costs $500 for a Wii or whatever. Then in a year or two you can get a nice bundle for a couple hundred. Many years down the line you can buy an N64 off ebay for a few bucks.
The new stuff always gets to the people that are willing to pay top dollar for it first. I'm sure one day this drug will be covered in Canada. It was only fairly recent that Ontario got PET scans iirc, so it's not the first time that they've waited to get potentially life saving technology.
I know it sounds grim and insensitive, but what happened to natural selection? Modern medicine and doctors are just trying to play "god". Are we supposed to give all sick people in this world free medical care?
I read the entire thread and I'm shocked that everyone so freely gives their sympathy while millions die each day. We're so callous of the plight of those that don't live within driving distance that even the words millions die each day are meaningless. I'm very sorry your friend will die. It is tragic.
So are the millions just like him who couldn't even dream of living the life he had lived before his death sentence. My sorrow you can have but my sympathy I will not give.
I'm no bitter cynic if labeling me so is your reaction. I've just had my eyes open to the horror that our world survives, or doesn't, every day. Next time you see your friend, look at him and ask yourself, will he be the last? Is it the companies fault?
We, as an entire civilization, need to stand up to the inhumanity of our current human nature. It isn't capitalism or corporate culture. It isn't monsters under the bed or in the capitols. It's every one of us, every time we turn blind to those who aren't in our culture. In our neighborhood, or country or community. We are monsters.
We need to stand for medicine no longer being a business. Human life is a fundamental right, not a price.
On June 23 2011 06:43 MasterOfChaos wrote: I'm a bit surprised with the price. If they priced it at 50k a year they'd need to sell about 10 times as much of it(assuming R&D dominates production cost). And that doesn't sound unlikely to me. More insurances will cover it for that cost, and more people will be able to pay it themselves.
It costs that much because the target market is so small only like 0.001 percent of the population is affected by this disease, and I guess the company figured 500k a year was the most reasonable price for them to see a return on investment. I do believe 500k is the price for Canada to use the drug and they price it differently around the world. Also many first world countries with health-care will foot the bill, but apparently Canada doesn't want too.
On June 23 2011 07:02 Eldanesh wrote: I know it sounds grim and insensitive, but what happened to natural selection? Modern medicine and doctors are just trying to play "god". Are we supposed to give all sick people in this world free medical care?
Funny. "What happened to natural selection?" is exactly what I thought when I read your post.
On June 23 2011 07:04 Probe1 wrote: We need to stand for medicine no longer being a business. Human life is a fundamental right, not a price.
Completely disagree. Private corporations having an interest in medicine is a good thing, government would just do it much more inefficiently, and instead of being funded by rich people, it would be funded by everyone, so we'd have significantly higher taxes to be pouring billions upon billions of dollars into research (and we already pour money into research). Just because government could be involved in research, do you want to bar others from researching as well? I hope not.
Human life is a fundamental right. It's a right in the sense other people cannot deny you from it. No one is denying him his right to live, to suggest so is completely ridiculous.
We need to stand for medicine no longer being a business. Human life is a fundamental right, not a price.
I'm having trouble figuring who is going to do all the medical research if such work is no longer paid, because dammit, people working on saving lives should do it for free.
Im most certain this has nothing to do with the healthcare system, this is about the so called "orphan diseases" (http://www.medterms.com/script/main/art.asp?articlekey=11418). The reason why the meicine is so expensive its because 10 years ago there was no treatment AT ALL so they had to give the monopoly to 1 company so that it was worth to invest in the development of a treatment.
Why is this needed? Because if not NO ONE would have invested in finding a cure because these diseases are extremely reare. In any case Im sorry for your friend.
Canada health care is generally free, but you have to understand that even though we are known for are universal healthcare, a treatment of this magnitude is just... It's not simply 500k, its half a million annually.
Treatment is money, anywhere in the world, and if it were my choice it wouldnt be a question, but when you have money dictating politics and not humane reasoning, life doesnt matter and your friend isn't going to get the treatment, I'm sorry.
7 billion people, in the eyes of people looking at money, 1 doesn't matter.
On June 22 2011 11:21 Lowkin wrote: One of my best friends has a rare blood disease that is usually fatal withing 10 years of diagnoses(he is on year 11). However recently there has been found a possible cure or treatment to combat the disease. Although there is a new cure/treatment to obtain it requires and astronomical amount of money. Even in Canada where we are praised for our health-care system my friend has fallen through the cracks because of the price tag of the treatment.
He is currently on a treatment that is not very effective and has serious consequences after long term use (e.g. more than 1 year) and he needs this medicine to continue to live a full life.
The drug company charges this huge price for there cure because of the illnesses rarity and that there is not a huge target market and they say for them to make profit on their investment of finding a cure they need to charge this impossible amount to pay for a regular citizen.
He is currently trying to get the Provincial government to cover his drug costs but so far there has been little progress on that front.
So any thoughts or ideas would be helpful and just wanted to create awareness of rare illnesses that fall through the cracks because of cost.
that is so wrong...if it's a drug, they can make it in a small quantity. they don't need to go into the kilos. are they just going to let your friend die just because he doesn't pay the astronomically high fee?
On June 22 2011 11:21 Lowkin wrote: One of my best friends has a rare blood disease that is usually fatal withing 10 years of diagnoses(he is on year 11). However recently there has been found a possible cure or treatment to combat the disease. Although there is a new cure/treatment to obtain it requires and astronomical amount of money. Even in Canada where we are praised for our health-care system my friend has fallen through the cracks because of the price tag of the treatment.
He is currently on a treatment that is not very effective and has serious consequences after long term use (e.g. more than 1 year) and he needs this medicine to continue to live a full life.
The drug company charges this huge price for there cure because of the illnesses rarity and that there is not a huge target market and they say for them to make profit on their investment of finding a cure they need to charge this impossible amount to pay for a regular citizen.
He is currently trying to get the Provincial government to cover his drug costs but so far there has been little progress on that front.
So any thoughts or ideas would be helpful and just wanted to create awareness of rare illnesses that fall through the cracks because of cost.
that is so wrong...if it's a drug, they can make it in a small quantity. they don't need to go into the kilos. are they just going to let your friend die just because he doesn't pay the astronomically high fee?
Just gonna point out that if they made it in smaller quantities it would surely cost more than what they're charging just for the company to stay afloat.
As for big pharm letting this guy die, I dunno, that one's hard to call. Obviously they have to charge this amount in order to recoup what they spent on R&D of this drug. They have to make some profit otherwise there would be no incentive to even develop this treatment. Then again, they could treat this guy for free and cause headlines all over the world about some humanistic company foregoing profits for the greater good of a disease only they can treat.
I think I read it somewhere earlier in this thread, but the days of medical miracles are gone. Every new advancement from here on will cost exorbitant amounts because of legislation, R&D, low target population, and other factors. The days of finding a miracle cure that everyone can use for a reasonable sum are over.
On June 22 2011 12:14 Arnstein wrote: Move to Norway. You actually aren't allowed to pay more than 300 dollars each year for any kind of treatment, after the first 300 dollars it's free.
Cool story, but irrelevant.
If the government approved this drug for use, it would cost this guy next to nothing to obtain it. The same rules that apply to all drugs in Canada would apply to this one. Thing is, the government has not approved the drug.
The government denies the treatment because they deem it not to be cost effective. I would be very surprised if the Norwegian government does not deny treatment on the same grounds.
It's just not something you hear about.
Also, in BC, most people will not pay more than a few hundred dollars before the government pays for everything. Same thing.
Calm down people, there is no need to get hysterical. You can't discuss with someone if they are shouting at you.
There seems to be a lot of meaningless platitudes in this thread, which is a disservice the OP. So here are some points to consider. If you don't like them or have a counter argument please use some facts and figures so the discussion moves on.
Is developing a drug expensive? This is a complicated question because the price is determined by many factors. Mostly it is due to the following:
Research Costs including Clinical Testing
Regulation costs including compliance testing, application costs
Cost of drugs that don’t make it.
Production costs of the drug including shipping, storage and administration
The number of patients required per trial depends on the expected benefit as well as expected toxicity profile, however most registration trials have a minimum of 500 patients.
Thus we can expect using rough estimates that each registration trial would cost approximately $26,000 x 1000 = $26,000,000
That is a big number. Even if my number estimates are high (I can tell you they are an underestimate), you are still looking at millions of dollars per trial. Now this is only the successful final phase III trial. There are also the previous Phase I and Phase II trials, which have costs of $1.5 Million (100 pts at $15,700 per patient) and $400,000 (20 patients at $19,300 per patient).
This doesn’t include the other costs of development including side trials for clarifying indication scope, toxicity effects, additional indications, local populations, costing trials and the list goes on. So for a drug that miraculously reached Phase I with no costs, had a perfect phase I,II and III trial, the total clinical costs would be approximately $28 Million
Now consider that most drugs have multiple clinical trials running. An example being one of our new compounds have 9 different registration trials running at the moment and you immediately up the costs to the almost $300 Million.
Less than 5% of cancer drugs that reach animal testing phase ever get to market. Whether the company makes a profit on those 5% is not certain. Most drugs don’t even get to animal testing phase. I work for a large pharmaceutical company, where we run over 1 million unique screenings a day looking for potential target matches.
This is pretty decent description of what happens during development. Or alternatively
Now if you have a problem with accepting that bringing a drug to market is expensive please provide some counter argument as to why this is not the case.
Why is he being charged $500k for a life saving drug As has been mentioned previously this is a rare disease with an incidence of “1-2 cases per million” ( http://en.wikipedia.org/wiki/Paroxysmal_nocturnal_hemoglobinuria#Epidemiology ). Thus the drug company can only expect to treat about 70 patients in Canada with which to recoup their costs. This assumes all patients would benefit and the company can get to them. Alexion is a small pharma company they have very little to diversify their costs and so have to charge the high price.
But life is sacred and pharma is making money from sick people! Nobody is arguing that the sick should be taken advantage of. Quite the opposite, the Canadian system is celebrated as on of the best in the world because it provides the greatest benefit at the lowest cost.
It is built for this purpose. It was designed, legislated and constructed specifically to minimise costs whilst maximising benefit for the whole country. This is where ethics come in and to argue the ethics of a nationalised health service is really pointless now. Suffice it to say that the Canadian health system is constructed to treat as many people as possible at the lowest cost possible.
As for Pharma making money off of sick people, I counter with Pharma companies do not make people sick. In fact, often it is people who make people sick. I don’t see you guys up in arms about Intel, or Razor or Blizzard or any other company that vicariously supports a sedentary lifestyle. Lack of exercise and the increase in sedentary lifestyle is a known risk factor for diabetes and heart disease. So why should we support companies that support such a lifestyle?
But Probulous, Pharma companies need sick people so they can make money. I will concede that if there was no sickness there would be no need for pharma companies. There would also be no need for hospitals or doctors. Are they evil as well?
So what do we do? This is the question that should be asked. I assume that this person has already approached the company directly for support. Most large companies have a compassionate use program but as mentioned Alexion is small. Moving countries isn’t going to help because, as mentioned, Canada has one of the best systems in the world. There may be countries where this is listed but good luck getting in with the condition. I guess you could try and look for a trial that is enrolling?
Probulous, you are a heartless bastard! Maybe I am, I don’t believe this is the truth but it is not beyond the realm of possibility. I feel for this young man, no-one enjoys making these decisions. It is an ugly reality that rationing of medication is real and cannot be avoided. Unfortunately, this is reality.
Please if you disagree with what I have said, outline where and how you disagree. Otherwise this discussion just descends into rhetorical shouting matches.
$28 million seems about right as an estimate. clinical trials consume a lot of cash.
i just don't find it OK to be charging medical care at $500,000. Obviously, the drug has already been discovered. Now it's the difference of say earning $20k or charging $500k and getting none. Maybe they need to extend patents to cover these rare diseases, so that companies have more incentive to work on rare disease.
On June 23 2011 03:07 domovoi wrote: The basic "problem" is that there needs to be a way for companies to recoup their R&D, but we also don't like monopoly pricing. One solution I have seen is to have the government purchase the patent for fair-market value after the pharma company completes all testing. Fair-market value can be calculated by having competing pharma companies bid for the patent, and the government can simply say, "there is a 90% chance we will buy it" in order to incentivize the bidders to do their due diligence. Then the government just releases it into the public domain.
The company I work for spends millions on R&D every year and there is a government tax credit for doing so. Doesn't recoup it all, but we certainly don't charge anywhere near what the pharmaseutical does in this story for our product, and the market we are in is not overly populated.
At the end of the day these companies do NOT want you to find a solution to common issues (ask my brother who went to Laurentian what they did when the primary professor started experimenting with light waves to beat cancer since cells emit a lightwave and it worked...didn't last long before he was shutdown for "ethical" reasons) such as cancer or disease because they WILL go out of business, lose millions in taxes and people WILL be laid off work.
Call it conspiracy, it's the truth. How many billions are donated to say cancer research every year and all they do is feed us a cocktail of god knows what to "treat" it. The whole medical field is a complete joke and it's driven by dollars/people getting sick/people needing treatment, end of story. $500,000 a year cannot be justified, unless that company makes a single drug in which case they need to expand their horizons. It's disgusting.
On June 22 2011 20:27 xM(Z wrote: how the fuck could developing/reaserching and getting this (and only this) thing approved cost billion of dollars? it only takes like 2-3 people, volunteers and ... time?
Even ignoring the entire clinical trial phase, you're entirely neglecting what goes into research. I will admit I don't know everything about medicine and pharmaceutical R&D, but I did work for my medicinal biochemist professor on research (interestingly, for crohn's disease, a relatively rare disease), and a lot of money is required just for: Equipment, reagents and paying the people. And she didn't get the high end equipment either, which reduced our research rate.
She had herself and 3 people in a lab, and it was taking FOREVER to get anywhere. She's been at it for several years (at least 7) and has made only a little bit of progress. This is partially because she teaches, but also due to the lack of people available to work. So if you want cures faster, you need more people (arguably, there is a breaking point) and these people need to be paid for their time and expertise. Sometimes, as few as 50g of starting material runs 1000 bucks (or more, these things can be quite expensive), and in high throughput screening just to identify a compound that MIGHT be a LEAD on a drug, you need A LOT of materials. This adds up quickly.
And if you want Ph.D's in chemistry and biology, and MD's, to work for free on drug R&D, good luck. While I'm sure most of those people don't dream of glamorous jobs, their extra 5+ years of schooling should demand reasonable compensation for their time and expertise. If you have 10 Ph.D's that can run you probably 1 million a year. Before any equipment or reagent costs, and these things take YEARS of R&D to get through. Then there's setting up the trials and everything else associated with it, I can see why it can cost up to a billion or more.
On topic: While up there I appear all pro-Pharma, I'm not HAPPY about the fate of the OP's friend. It's just an unfortunate reality when dealing with rare diseases and the cost of drug R&D. On one hand, the sick person cannot afford treatment, on the other, many people's livelihood depend upon a company's ability to pull a profit. It's hard to just sit and say one is more important than the other, in my mind.
On June 23 2011 10:08 IzieBoy wrote: $28 million seems about right as an estimate. clinical trials consume a lot of cash.
i just don't find it OK to be charging medical care at $500,000. Obviously, the drug has already been discovered. Now it's the difference of say earning $20k or charging $500k and getting none. Maybe they need to extend patents to cover these rare diseases, so that companies have more incentive to work on rare disease.
But your logic is faulty. Companies don't get paid until the drug is on sale. Just because it has been discovered doesn't mean the discovery costs can be ignored. Companies don't earn their revenue through individual patients paying. They earn it through Hospitals, Insurance Companies and governments subsidising patient payments.
If they openly charge patients 20K, the other payers have every right to question why the company charges them more. This is why most companies have a compassionate program. As soon as they set a lower price to anyone then everyone will expect that or lower.
As for patents, they do cover specific rare diseases. I guess what you mean is they should be longer, allowing companies to earn more long term. This is a possibility, which might work.
I should note companies are targeting rare conditions more and more, simply because they are often simpler to cure. Gleevec(US, Glivec elsewhere) was the first real rare disease blockbuster and made money because it cured the disease.
On June 23 2011 10:00 Probulous wrote: Calm down people, there is no need to get hysterical. You can't discuss with someone if they are shouting at you.
There seems to be a lot of meaningless platitudes in this thread, which is a disservice the OP. So here are some points to consider. If you don't like them or have a counter argument please use some facts and figures so the discussion moves on.
Is developing a drug expensive? This is a complicated question because the price is determined by many factors. Mostly it is due to the following:
Research Costs including Clinical Testing
Regulation costs including compliance testing, application costs
Cost of drugs that don’t make it.
Production costs of the drug including shipping, storage and administration
The number of patients required per trial depends on the expected benefit as well as expected toxicity profile, however most registration trials have a minimum of 500 patients.
Thus we can expect using rough estimates that each registration trial would cost approximately $26,000 x 1000 = $26,000,000
That is a big number. Even if my number estimates are high (I can tell you they are an underestimate), you are still looking at millions of dollars per trial. Now this is only the successful final phase III trial. There are also the previous Phase I and Phase II trials, which have costs of $1.5 Million (100 pts at $15,700 per patient) and $400,000 (20 patients at $19,300 per patient).
This doesn’t include the other costs of development including side trials for clarifying indication scope, toxicity effects, additional indications, local populations, costing trials and the list goes on. So for a drug that miraculously reached Phase I with no costs, had a perfect phase I,II and III trial, the total clinical costs would be approximately $28 Million
Now consider that most drugs have multiple clinical trials running. An example being one of our new compounds have 9 different registration trials running at the moment and you immediately up the costs to the almost $300 Million.
Less than 5% of cancer drugs that reach animal testing phase ever get to market. Whether the company makes a profit on those 5% is not certain. Most drugs don’t even get to animal testing phase. I work for a large pharmaceutical company, where we run over 1 million unique screenings a day looking for potential target matches.
This is pretty decent description of what happens during development. Or alternatively
Now if you have a problem with accepting that bringing a drug to market is expensive please provide some counter argument as to why this is not the case.
Why is he being charged $500k for a life saving drug As has been mentioned previously this is a rare disease with an incidence of “1-2 cases per million” ( http://en.wikipedia.org/wiki/Paroxysmal_nocturnal_hemoglobinuria#Epidemiology ). Thus the drug company can only expect to treat about 70 patients in Canada with which to recoup their costs. This assumes all patients would benefit and the company can get to them. Alexion is a small pharma company they have very little to diversify their costs and so have to charge the high price.
But life is sacred and pharma is making money from sick people! Nobody is arguing that the sick should be taken advantage of. Quite the opposite, the Canadian system is celebrated as on of the best in the world because it provides the greatest benefit at the lowest cost.
It is built for this purpose. It was designed, legislated and constructed specifically to minimise costs whilst maximising benefit for the whole country. This is where ethics come in and to argue the ethics of a nationalised health service is really pointless now. Suffice it to say that the Canadian health system is constructed to treat as many people as possible at the lowest cost possible.
As for Pharma making money off of sick people, I counter with Pharma companies do not make people sick. In fact, often it is people who make people sick. I don’t see you guys up in arms about Intel, or Razor or Blizzard or any other company that vicariously supports a sedentary lifestyle. Lack of exercise and the increase in sedentary lifestyle is a known risk factor for diabetes and heart disease. So why should we support companies that support such a lifestyle?
But Probulous, Pharma companies need sick people so they can make money. I will concede that if there was no sickness there would be no need for pharma companies. There would also be no need for hospitals or doctors. Are they evil as well?
So what do we do? This is the question that should be asked. I assume that this person has already approached the company directly for support. Most large companies have a compassionate use program but as mentioned Alexion is small. Moving countries isn’t going to help because, as mentioned, Canada has one of the best systems in the world. There may be countries where this is listed but good luck getting in with the condition. I guess you could try and look for a trial that is enrolling?
Probulous, you are a heartless bastard! Maybe I am, I don’t believe this is the truth but it is not beyond the realm of possibility. I feel for this young man, no-one enjoys making these decisions. It is an ugly reality that rationing of medication is real and cannot be avoided. Unfortunately, this is reality.
Please if you disagree with what I have said, outline where and how you disagree. Otherwise this discussion just descends into rhetorical shouting matches.
Very good post and well researched.
I just want to point out, however, that the vast majority of pharma, especially the bigger ones, make way more money on their drugs than they spend on research. My friend is the head of a drug testing company based in China that does drug tests for both American and Chinese pharma (it's in China 'cause tax is easier or something iunno).
Even though research for one round of new drugs will cost up to or around a billion USD, the thing is, the drugs that do make it through are very often charged astronomical cost, such that they can make a LOT of $$$ for it. The reason is NOT purely due to "covering research costs." It's because patent laws are strange and incomplete. Once a drug comes out onto the market, it's only a matter of time before another pharma is able to make their own copy of the drug. Usually by altering the makeup of the drug with some inactive ingredient/chemical. Of course, it's much more complex than I can describe, but the basic premise is quite simple. What does this mean? It basically means that the pharma that develops the drug originally will only have a small window of time where they can make maximum profits. As such, they will crank up the price of the drug to extremely high, sometimes extortionate prices before the inevitable copies come out.
Pharma companies exist to make money. They do that very, very well.
In the OP's friend's case, however, is a little more unique. The above process I described is usually for medication for diseases that aren't all that rare. In this case, the OP's friend's illness is so rare , that's is completely impossible for the company to make any kind of profit, or even to attempt to break even on costs, without charging an astronomical amount for it.
This case is tragic and I truly wish there was something that could be done. But the fact of the matter is, pharma is a business, and a very well-run, fined tuned business. I wish the OP and his friend good luck. Definitely try to get some donations; it may help... :\
On June 23 2011 03:07 domovoi wrote: The basic "problem" is that there needs to be a way for companies to recoup their R&D, but we also don't like monopoly pricing. One solution I have seen is to have the government purchase the patent for fair-market value after the pharma company completes all testing. Fair-market value can be calculated by having competing pharma companies bid for the patent, and the government can simply say, "there is a 90% chance we will buy it" in order to incentivize the bidders to do their due diligence. Then the government just releases it into the public domain.
The company I work for spends millions on R&D every year and there is a government tax credit for doing so. Doesn't recoup it all, but we certainly don't charge anywhere near what the pharmaseutical does in this story for our product, and the market we are in is not overly populated.
At the end of the day these companies do NOT want you to find a solution to common issues (ask my brother who went to Laurentian what they did when the primary professor started experimenting with light waves to beat cancer since cells emit a lightwave and it worked...didn't last long before he was shutdown for "ethical" reasons) such as cancer or disease because they WILL go out of business, lose millions in taxes and people WILL be laid off work.
There is probably a very good reason if the reason given was ethics. Trust me a pharma company would have nothing to do with this. Every research institution has an ethics committee they reviews research to make sure it adheres to stupiulated ethical guidelines. If this work was cancelled due to an ethics consideration, it has nothing to do with pharma.
Call it conspiracy, it's the truth. How many billions are donated to say cancer research every year and all they do is feed us a cocktail of god knows what to "treat" it. The whole medical field is a complete joke and it's driven by dollars/people getting sick/people needing treatment, end of story. $500,000 a year cannot be justified, unless that company makes a single drug in which case they need to expand their horizons. It's disgusting.
The joinpoint trend in US cancer mortality with associated APC(%) for cancer of the breast between 1975-2007, All Races. 1975-1990: Trend 0.4 (Significant) 1990-2007: -2.2 (Signigicant) http://seer.cancer.gov/statfacts/html/breast.html Basically breast cancer mortality has been coming down drastically over the last twenty years. I can't say whether this is due to better medication, prevention or awareness but it hardly damning evidence of a conspiracy to keep people sick.
If drug development is expensive, surely it follows that it is not easy to develop multiple drugs. Sure don't put all your eggs in one basket, if you can! Remember Only 5% of drugs that reach clinical testing make it to market.
On June 22 2011 22:27 MidKnight wrote: Capitalism makes me sick sometimes.. Like, sure, it may have cost ridiculous amount of time and resources to come up with the drug. But now IT'S THERE. You can simply save person's life if you give it to him. But you don't because he doesn't pay you money..
Yea, I know that's how world works (someone made a point about vaccinations not being given to people in 3rd world countries, for example, due to monetary reasons), but it's just depressing when you start thinking about it..
Quote for truth, a lot of the drug that i see not really make it to market when they could just make the ones they have on the market cheaper. Sad world we live in, but this way creates jobs, income and money for people who work in the pharma industry (which has ridiculously high wages by the way)
I'm actually leaving the industry in 6 weeks, spamming starcraft for 12/7 2 months before my course starts and going back to university to study MEng in Computer Science because of it. Whole industry makes me sick.
It's kind of weird that nobody here has first hand experience of a pharma conspiracy to keep people sick but a few people have said they have a friend or relative with firsthand experience. I doubt they even know if that friend or relative didn't hear it through the grapevine either since that friend/relative probably wasn't lead researcher and was also probably told whatever they heard. By the time it gets to us it's like 5 people removed which is some pretty extreme heresy.
On June 23 2011 10:08 IzieBoy wrote: $28 million seems about right as an estimate. clinical trials consume a lot of cash.
i just don't find it OK to be charging medical care at $500,000. Obviously, the drug has already been discovered. Now it's the difference of say earning $20k or charging $500k and getting none. Maybe they need to extend patents to cover these rare diseases, so that companies have more incentive to work on rare disease.
But your logic is faulty. Companies don't get paid until the drug is on sale. Just because it has been discovered doesn't mean the discovery costs can be ignored. Companies don't earn their revenue through individual patients paying. They earn it through Hospitals, Insurance Companies and governments subsidising patient payments.
If they openly charge patients 20K, the other payers have every right to question why the company charges them more. This is why most companies have a compassionate program. As soon as they set a lower price to anyone then everyone will expect that or lower.
As for patents, they do cover specific rare diseases. I guess what you mean is they should be longer, allowing companies to earn more long term. This is a possibility, which might work.
I should note companies are targeting rare conditions more and more, simply because they are often simpler to cure. Gleevec(US, Glivec elsewhere) was the first real rare disease blockbuster and made money because it cured the disease.
Probulous,
thanks for the gleevec example. so why don't the insurance companies cover Soliris?
you sound very informed. you wouldn't mind if i asked what you do for a living?
P.S. lol i wonder when Blizzard would get sued for promoting sedentary lifestyle.
in a thread like this im almost 100% sure i could guess all the posters that are from the united states just by reading their posts
you guys have funny ideas about how economics should work and about "personal responsibility"
so yeah, fuck this guy for not having enough money, drug companies need their profits as well, he should just develop an iphone app and make a quick million if he wants to live
and its prolly his own fault for getting this disease anyways, right?
On June 23 2011 10:08 IzieBoy wrote: $28 million seems about right as an estimate. clinical trials consume a lot of cash.
i just don't find it OK to be charging medical care at $500,000. Obviously, the drug has already been discovered. Now it's the difference of say earning $20k or charging $500k and getting none. Maybe they need to extend patents to cover these rare diseases, so that companies have more incentive to work on rare disease.
But your logic is faulty. Companies don't get paid until the drug is on sale. Just because it has been discovered doesn't mean the discovery costs can be ignored. Companies don't earn their revenue through individual patients paying. They earn it through Hospitals, Insurance Companies and governments subsidising patient payments.
If they openly charge patients 20K, the other payers have every right to question why the company charges them more. This is why most companies have a compassionate program. As soon as they set a lower price to anyone then everyone will expect that or lower.
As for patents, they do cover specific rare diseases. I guess what you mean is they should be longer, allowing companies to earn more long term. This is a possibility, which might work.
I should note companies are targeting rare conditions more and more, simply because they are often simpler to cure. Gleevec(US, Glivec elsewhere) was the first real rare disease blockbuster and made money because it cured the disease.
thanks for the gleevec example. so why don't the insurance companies cover Soliris?
you sound very informed. you wouldn't mind if i asked what you do for a living?
Not sure. Like I said it depends on the economics of the situation. Insurance companies follow the same logic as governments, if it isn't cost-effective based on the probability of payout then they won't pay for it. I mentioned in one of my earlier posts that this sounds like a price issue. You have a small company trying to wring every dollar out of its most successful drug, and the payers trying to get the greatest benefit with their budget. I can't be certain without noting the details.
Calm down people, there is no need to get hysterical. You can't discuss with someone if they are shouting at you.
There seems to be a lot of meaningless platitudes in this thread, which is a disservice the OP. So here are some points to consider. If you don't like them or have a counter argument please use some facts and figures so the discussion moves on.
Is developing a drug expensive? This is a complicated question because the price is determined by many factors. Mostly it is due to the following:
Research Costs including Clinical Testing
Regulation costs including compliance testing, application costs
Cost of drugs that don’t make it.
Production costs of the drug including shipping, storage and administration
The number of patients required per trial depends on the expected benefit as well as expected toxicity profile, however most registration trials have a minimum of 500 patients.
Thus we can expect using rough estimates that each registration trial would cost approximately $26,000 x 1000 = $26,000,000
That is a big number. Even if my number estimates are high (I can tell you they are an underestimate), you are still looking at millions of dollars per trial. Now this is only the successful final phase III trial. There are also the previous Phase I and Phase II trials, which have costs of $1.5 Million (100 pts at $15,700 per patient) and $400,000 (20 patients at $19,300 per patient).
This doesn’t include the other costs of development including side trials for clarifying indication scope, toxicity effects, additional indications, local populations, costing trials and the list goes on. So for a drug that miraculously reached Phase I with no costs, had a perfect phase I,II and III trial, the total clinical costs would be approximately $28 Million
Now consider that most drugs have multiple clinical trials running. An example being one of our new compounds have 9 different registration trials running at the moment and you immediately up the costs to the almost $300 Million.
Less than 5% of cancer drugs that reach animal testing phase ever get to market. Whether the company makes a profit on those 5% is not certain. Most drugs don’t even get to animal testing phase.
I work for a large pharmaceutical company, where we run over 1 million unique screenings a day looking for potential target matches. + Show Spoiler +
This is pretty decent description of what happens during development. Or alternatively
Now if you have a problem with accepting that bringing a drug to market is expensive please provide some counter argument as to why this is not the case.
Why is he being charged $500k for a life saving drug As has been mentioned previously this is a rare disease with an incidence of “1-2 cases per million” ( http://en.wikipedia.org/wiki/Paroxysmal_nocturnal_hemoglobinuria#Epidemiology ). Thus the drug company can only expect to treat about 70 patients in Canada with which to recoup their costs. This assumes all patients would benefit and the company can get to them. Alexion is a small pharma company they have very little to diversify their costs and so have to charge the high price.
But life is sacred and pharma is making money from sick people! Nobody is arguing that the sick should be taken advantage of. Quite the opposite, the Canadian system is celebrated as on of the best in the world because it provides the greatest benefit at the lowest cost.
It is built for this purpose. It was designed, legislated and constructed specifically to minimise costs whilst maximising benefit for the whole country. This is where ethics come in and to argue the ethics of a nationalised health service is really pointless now. Suffice it to say that the Canadian health system is constructed to treat as many people as possible at the lowest cost possible.
As for Pharma making money off of sick people, I counter with Pharma companies do not make people sick. In fact, often it is people who make people sick. I don’t see you guys up in arms about Intel, or Razor or Blizzard or any other company that vicariously supports a sedentary lifestyle. Lack of exercise and the increase in sedentary lifestyle is a known risk factor for diabetes and heart disease. So why should we support companies that support such a lifestyle?
But Probulous, Pharma companies need sick people so they can make money. I will concede that if there was no sickness there would be no need for pharma companies. There would also be no need for hospitals or doctors. Are they evil as well?
So what do we do? This is the question that should be asked. I assume that this person has already approached the company directly for support. Most large companies have a compassionate use program but as mentioned Alexion is small. Moving countries isn’t going to help because, as mentioned, Canada has one of the best systems in the world. There may be countries where this is listed but good luck getting in with the condition. I guess you could try and look for a trial that is enrolling?
Probulous, you are a heartless bastard! Maybe I am, I don’t believe this is the truth but it is not beyond the realm of possibility. I feel for this young man, no-one enjoys making these decisions. It is an ugly reality that rationing of medication is real and cannot be avoided. Unfortunately, this is reality.
Please if you disagree with what I have said, outline where and how you disagree. Otherwise this discussion just descends into rhetorical shouting matches.
)I work for one of the largest pharma companies. I look after our preclinical research projects and am currently studying a masters in health economics.
I know this may make me look biased but I do try at least provide information along with my opinions. Again, if there is something that I have said that doesn't appear to be correct, I will change it.
And seriously reading this thread makes me so GLAD to live in Northern Ireland. we don't even have to pay the nominal £7 prescription fee any more, 100% free medicines regardless, and i've had serious leg problems due to a car crash, serious stomach problems when i was 16. I could even imagine having to worry about paying for endoscopes, and ECG's and regular things i need all the time. (due to a congenial heart defect hypertrophic cardiomyopathy for those who are curious) i would probably be completely uninsurable in the us.
I feel for you guys, you need to get that sorted out, pay more for food and fuel due to higher tax... get free health care? sounds like a good deal to me. But im sure the idea of an even slightly socialist government freaks you guys out due to the whole cold war BS with those damn COMMIES!
But yeah sucks not to have free healthcare, my brother probably would have died, due to the same heart defect i have as he was also uninsurable and needed a internal cardiac defibulator to stop him having minor heart attacks (much more serious than my own). He was 19 when that all started, and that would be such a waste of precious human life due to a government that just doesn't help those who cant get insurance. If we were american.
On June 23 2011 10:49 Probulous wrote: There is probably a very good reason if the reason given was ethics. Trust me a pharma company would have nothing to do with this. Every research institution has an ethics committee they reviews research to make sure it adheres to stupiulated ethical guidelines. If this work was cancelled due to an ethics consideration, it has nothing to do with pharma.
I would agree if it weren't for the reason that the research only entailed hitting the "bad cells' with a wavelength of light that offset their "natural" wavelength therefore allowing it to not function and destroying it in its entirety. "Ethics commitees" are just a title, at the end of the day their goal is to make money, survive and show they are a worthwhile body to have around/support/employ. You're right they all have one, they all have a "code" but the research was so un-intrusive to the human body, did not use cloning/stemcell/etc it's hard to come up with a valid reason they shut it down. At the end of the day we'll never know, but think what's at stake if pharmaseutical companies, health care systems, governments etc couldn't charge the outrageous wages they do to keep us hanging by a thread when the worst case scenario arises? It's a multi-billion dollar industry easily.
On June 23 2011 11:44 Detri wrote: And seriously reading this thread makes me so GLAD to live in Northern Ireland. we don't even have to pay the nominal £7 prescription fee any more, 100% free medicines regardless, and i've had serious leg problems due to a car crash, serious stomach problems when i was 16. I could even imagine having to worry about paying for endoscopes, and ECG's and regular things i need all the time. (due to a congenial heart defect hypertrophic cardiomyopathy for those who are curious) i would probably be completely uninsurable in the us.
I feel for you guys, you need to get that sorted out, pay more for food and fuel due to higher tax... get free health care? sounds like a good deal to me. But im sure the idea of an even slightly socialist government freaks you guys out due to the whole cold war BS with those damn COMMIES!
But yeah sucks not to have free healthcare, my brother probably would have died, due to the same heart defect i have as he was also uninsurable and needed a internal cardiac defibulator to stop him having minor heart attacks (much more serious than my own). He was 19 when that all started, and that would be such a waste of precious human life due to a government that just doesn't help those who cant get insurance. If we were american.
There is no way in hell the NHS would pay 500k a year for this. We have rationing, treatments are weighed on cost effectiveness and I doubt this would qualify.
On June 23 2011 11:37 summerloud wrote: in a thread like this im almost 100% sure i could guess all the posters that are from the united states just by reading their posts
you guys have funny ideas about how economics should work and about "personal responsibility"
so yeah, fuck this guy for not having enough money, drug companies need their profits as well, he should just develop an iphone app and make a quick million if he wants to live
and its prolly his own fault for getting this disease anyways, right?
Way to be biased against the US. What, you expect drug companies to spend millions of dollars researching new drugs for people only to go out and get nothing in return? Drug companies already make shit for profits.
On June 23 2011 11:52 cLutZ wrote: Pretty sure the rare blood disease, not the cost is the death sentence.
You realize that his friend is going to die right... this shit is what you come up with when reading something like this? Go be a wise-ass somewhere else.
On June 23 2011 10:49 Probulous wrote: There is probably a very good reason if the reason given was ethics. Trust me a pharma company would have nothing to do with this. Every research institution has an ethics committee they reviews research to make sure it adheres to stupiulated ethical guidelines. If this work was cancelled due to an ethics consideration, it has nothing to do with pharma.
I would agree if it weren't for the reason that the research only entailed hitting the "bad cells' with a wavelength of light that offset their "natural" wavelength therefore allowing it to not function and destroying it in its entirety. "Ethics commitees" are just a title, at the end of the day their goal is to make money, survive and show they are a worthwhile body to have around/support/employ. You're right they all have one, they all have a "code" but the research was so un-intrusive to the human body, did not use cloning/stemcell/etc it's hard to come up with a valid reason they shut it down. At the end of the day we'll never know, but think what's at stake if pharmaseutical companies, health care systems, governments etc couldn't charge the outrageous wages they do to keep us hanging by a thread when the worst case scenario arises? It's a multi-billion dollar industry easily.
Was he testing this in humans? Or in a laboratory with cells. My suspicion is he was testing it in either animals or humans. Ethics committees have no pharma represetnative. They are made up of other doctors, a legal representative, members of the local community and usually an ethics specialist. Their purpose is to put the research through a rigorous evaluation on the good that could come from it. If the research is in humans there has to be a very clear rationale for using this therapy. I see no way pharma would be able to influence that decision short of buying off committee members. If you are suggesting this then something more than gut feel is needed.
I have a suggestion, it's a long shot but worth a try IMO. Find out who the president or chairmen of the company is and write him a personal appeal. Be very kind and humble. Explain the situation, include a picture of your friend, what he would like to do with his life if he was able to live it. Humanize him to this person. Beg him not to let your friend die and point out the he has the power to save his life.
It's a long shot, but you would be amazed what a little time and some thoughtful words can do. If this person has a conscience it will be very difficult for him or her to justify, in their own mind, letting your friend die because of profit margins. Most major drug companies are extremely profitable and many wealthy people realize how blessed they are and practice philanthropy.
I'd like to add that reading the drug's name, it sounds like a monoclonal antibody of some kind, meaning it is much more fragile and unstable than your typical chemical compound. Coupled with the large infusion and constant treatments, I can see why this might cost a boat load of money.
I do feel bad for him, but I don't see this issue being resolved any time soon and certainly not within a year.
On June 23 2011 11:37 summerloud wrote: in a thread like this im almost 100% sure i could guess all the posters that are from the united states just by reading their posts
you guys have funny ideas about how economics should work and about "personal responsibility"
so yeah, fuck this guy for not having enough money, drug companies need their profits as well, he should just develop an iphone app and make a quick million if he wants to live
and its prolly his own fault for getting this disease anyways, right?
I don't even know what to say to this post.
I hope this is supposed to be some kind of black comedic take on the absurdity of his situation. Otherwise this is just a cold hearless thing to say. It also happens to be way off topic as we are not talking about the US, rather Canada which has universal health care.
Short of nothing else, please clarify what you meant when you wrote this.
On June 23 2011 10:00 Probulous wrote: Calm down people, there is no need to get hysterical. You can't discuss with someone if they are shouting at you.
There seems to be a lot of meaningless platitudes in this thread, which is a disservice the OP. So here are some points to consider. If you don't like them or have a counter argument please use some facts and figures so the discussion moves on.
Is developing a drug expensive? This is a complicated question because the price is determined by many factors. Mostly it is due to the following:
Research Costs including Clinical Testing
Regulation costs including compliance testing, application costs
Cost of drugs that don’t make it.
Production costs of the drug including shipping, storage and administration
The number of patients required per trial depends on the expected benefit as well as expected toxicity profile, however most registration trials have a minimum of 500 patients.
Thus we can expect using rough estimates that each registration trial would cost approximately $26,000 x 1000 = $26,000,000
That is a big number. Even if my number estimates are high (I can tell you they are an underestimate), you are still looking at millions of dollars per trial. Now this is only the successful final phase III trial. There are also the previous Phase I and Phase II trials, which have costs of $1.5 Million (100 pts at $15,700 per patient) and $400,000 (20 patients at $19,300 per patient).
This doesn’t include the other costs of development including side trials for clarifying indication scope, toxicity effects, additional indications, local populations, costing trials and the list goes on. So for a drug that miraculously reached Phase I with no costs, had a perfect phase I,II and III trial, the total clinical costs would be approximately $28 Million
Now consider that most drugs have multiple clinical trials running. An example being one of our new compounds have 9 different registration trials running at the moment and you immediately up the costs to the almost $300 Million.
Less than 5% of cancer drugs that reach animal testing phase ever get to market. Whether the company makes a profit on those 5% is not certain. Most drugs don’t even get to animal testing phase. I work for a large pharmaceutical company, where we run over 1 million unique screenings a day looking for potential target matches.
This is pretty decent description of what happens during development. Or alternatively
Now if you have a problem with accepting that bringing a drug to market is expensive please provide some counter argument as to why this is not the case.
Why is he being charged $500k for a life saving drug As has been mentioned previously this is a rare disease with an incidence of “1-2 cases per million” ( http://en.wikipedia.org/wiki/Paroxysmal_nocturnal_hemoglobinuria#Epidemiology ). Thus the drug company can only expect to treat about 70 patients in Canada with which to recoup their costs. This assumes all patients would benefit and the company can get to them. Alexion is a small pharma company they have very little to diversify their costs and so have to charge the high price.
But life is sacred and pharma is making money from sick people! Nobody is arguing that the sick should be taken advantage of. Quite the opposite, the Canadian system is celebrated as on of the best in the world because it provides the greatest benefit at the lowest cost.
It is built for this purpose. It was designed, legislated and constructed specifically to minimise costs whilst maximising benefit for the whole country. This is where ethics come in and to argue the ethics of a nationalised health service is really pointless now. Suffice it to say that the Canadian health system is constructed to treat as many people as possible at the lowest cost possible.
As for Pharma making money off of sick people, I counter with Pharma companies do not make people sick. In fact, often it is people who make people sick. I don’t see you guys up in arms about Intel, or Razor or Blizzard or any other company that vicariously supports a sedentary lifestyle. Lack of exercise and the increase in sedentary lifestyle is a known risk factor for diabetes and heart disease. So why should we support companies that support such a lifestyle?
But Probulous, Pharma companies need sick people so they can make money. I will concede that if there was no sickness there would be no need for pharma companies. There would also be no need for hospitals or doctors. Are they evil as well?
So what do we do? This is the question that should be asked. I assume that this person has already approached the company directly for support. Most large companies have a compassionate use program but as mentioned Alexion is small. Moving countries isn’t going to help because, as mentioned, Canada has one of the best systems in the world. There may be countries where this is listed but good luck getting in with the condition. I guess you could try and look for a trial that is enrolling?
Probulous, you are a heartless bastard! Maybe I am, I don’t believe this is the truth but it is not beyond the realm of possibility. I feel for this young man, no-one enjoys making these decisions. It is an ugly reality that rationing of medication is real and cannot be avoided. Unfortunately, this is reality.
Please if you disagree with what I have said, outline where and how you disagree. Otherwise this discussion just descends into rhetorical shouting matches.
Very good post and well researched.
I just want to point out, however, that the vast majority of pharma, especially the bigger ones, make way more money on their drugs than they spend on research. My friend is the head of a drug testing company based in China that does drug tests for both American and Chinese pharma (it's in China 'cause tax is easier or something iunno).
Even though research for one round of new drugs will cost up to or around a billion USD, the thing is, the drugs that do make it through are very often charged astronomical cost, such that they can make a LOT of $$$ for it. The reason is NOT purely due to "covering research costs." It's because patent laws are strange and incomplete. Once a drug comes out onto the market, it's only a matter of time before another pharma is able to make their own copy of the drug. Usually by altering the makeup of the drug with some inactive ingredient/chemical. Of course, it's much more complex than I can describe, but the basic premise is quite simple. What does this mean? It basically means that the pharma that develops the drug originally will only have a small window of time where they can make maximum profits. As such, they will crank up the price of the drug to extremely high, sometimes extortionate prices before the inevitable copies come out.
Pharma companies exist to make money. They do that very, very well.
In the OP's friend's case, however, is a little more unique. The above process I described is usually for medication for diseases that aren't all that rare. In this case, the OP's friend's illness is so rare , that's is completely impossible for the company to make any kind of profit, or even to attempt to break even on costs, without charging an astronomical amount for it.
This case is tragic and I truly wish there was something that could be done. But the fact of the matter is, pharma is a business, and a very well-run, fined tuned business. I wish the OP and his friend good luck. Definitely try to get some donations; it may help... :\
I wonder if a creative solution is possible in this case.
If I was in the OP's friend's shoes, I would approach the company with the following offer:
50% of my income for the rest of my life (while I'm on the drug), on a progressive scale, until that amount reaches the market price of the drug, whereupon I will pay the market price.
This takes the following into account:
It is a rare disease and they can only make money off so many people.
I am one of those people.
I will have the disease for the rest of my life.
I will die if I don't get the drug.
The marginal cost of providing the drug is below my annual payments.
Pharma companies want to maximise their profits.
The idea here is that if I die, they won't get any money anyway. But if I can demonstrate to them that the price that are charging is beyond my ability to pay, I can give them the ability to price discriminate. So long as my payments cover the cost of manufacturing the drug and give them a healthy profit (remember to account for overheads like administrating the agreement, legal risks, etc.), then it's worthwhile for them to accept it.
As for me, it would be a choice between death and any alternative I can find. Sure, lobbying would be an option - but then consider the probabilities of success. There's no reason we can't do both - make this agreement, then lobby (I doubt any government would subsidise such a drug). Just make sure to consult a lawyer and be sure to cover all contingencies in the agreement. Contingencies I would consider include how things should work out if a newer, better drug is later developed, if the government decides to cover this drug, if I can now afford the drug...it's something you have to sit down and plan out thoroughly with legal professionals.
There may be obstacles to this sort of contract. For a start, it might violate some law - there might be a law that prohibits contracts that result in such wage slavery. There might not be an explicit law, but there might be precedents where the pharmaceutical company is worried that it cannot actually enforce the contract. In these cases, the obstacle to tackle is the law.
There may be obstacles in the form of competition laws - particularly regarding price discrimination. The law might step in and say that pharma companies must charge all their customers the same price.
There may be other strategic considerations we haven't considered - the pharma might be worried about what effects this will have on their future sales, their PR, and such. Perhaps a large pool of their customers also have lower income like your friend but have rich relatives, and they risk losing that revenue. Maybe there will be backlash from the public who do not understand the agreement your friend makes. Their previous customers may quit work to claim the drug at a lower cost. So your agreement must be sufficiently hard in order to discourage others who can afford the drug from taking the cheaper option, or it must be done in absolute secret.
And if the drug actually does cost $500,000 to manufacture, then there's not much you can do.
On June 23 2011 11:37 summerloud wrote: in a thread like this im almost 100% sure i could guess all the posters that are from the united states just by reading their posts
you guys have funny ideas about how economics should work and about "personal responsibility"
so yeah, fuck this guy for not having enough money, drug companies need their profits as well, he should just develop an iphone app and make a quick million if he wants to live
and its prolly his own fault for getting this disease anyways, right?
Put up or shut up. I don't see you donating any money for his cause.
On June 23 2011 11:44 Detri wrote: And seriously reading this thread makes me so GLAD to live in Northern Ireland. we don't even have to pay the nominal £7 prescription fee any more, 100% free medicines regardless, and i've had serious leg problems due to a car crash, serious stomach problems when i was 16. I could even imagine having to worry about paying for endoscopes, and ECG's and regular things i need all the time. (due to a congenial heart defect hypertrophic cardiomyopathy for those who are curious) i would probably be completely uninsurable in the us.
I feel for you guys, you need to get that sorted out, pay more for food and fuel due to higher tax... get free health care? sounds like a good deal to me. But im sure the idea of an even slightly socialist government freaks you guys out due to the whole cold war BS with those damn COMMIES!
But yeah sucks not to have free healthcare, my brother probably would have died, due to the same heart defect i have as he was also uninsurable and needed a internal cardiac defibulator to stop him having minor heart attacks (much more serious than my own). He was 19 when that all started, and that would be such a waste of precious human life due to a government that just doesn't help those who cant get insurance. If we were american.
I doubt your government would pay for this drug either.
Free healthcare does not mean that all medications will be covered, even for life-threatening disorders. The specifics will change from place to place.
I wonder if there's any government in the world that subsidises all life-threatening medications?
On June 23 2011 10:00 Probulous wrote: Calm down people, there is no need to get hysterical. You can't discuss with someone if they are shouting at you.
There seems to be a lot of meaningless platitudes in this thread, which is a disservice the OP. So here are some points to consider. If you don't like them or have a counter argument please use some facts and figures so the discussion moves on.
Is developing a drug expensive? This is a complicated question because the price is determined by many factors. Mostly it is due to the following:
Research Costs including Clinical Testing
Regulation costs including compliance testing, application costs
Cost of drugs that don’t make it.
Production costs of the drug including shipping, storage and administration
The number of patients required per trial depends on the expected benefit as well as expected toxicity profile, however most registration trials have a minimum of 500 patients.
Thus we can expect using rough estimates that each registration trial would cost approximately $26,000 x 1000 = $26,000,000
That is a big number. Even if my number estimates are high (I can tell you they are an underestimate), you are still looking at millions of dollars per trial. Now this is only the successful final phase III trial. There are also the previous Phase I and Phase II trials, which have costs of $1.5 Million (100 pts at $15,700 per patient) and $400,000 (20 patients at $19,300 per patient).
This doesn’t include the other costs of development including side trials for clarifying indication scope, toxicity effects, additional indications, local populations, costing trials and the list goes on. So for a drug that miraculously reached Phase I with no costs, had a perfect phase I,II and III trial, the total clinical costs would be approximately $28 Million
Now consider that most drugs have multiple clinical trials running. An example being one of our new compounds have 9 different registration trials running at the moment and you immediately up the costs to the almost $300 Million.
Less than 5% of cancer drugs that reach animal testing phase ever get to market. Whether the company makes a profit on those 5% is not certain. Most drugs don’t even get to animal testing phase. I work for a large pharmaceutical company, where we run over 1 million unique screenings a day looking for potential target matches.
This is pretty decent description of what happens during development. Or alternatively
Now if you have a problem with accepting that bringing a drug to market is expensive please provide some counter argument as to why this is not the case.
Why is he being charged $500k for a life saving drug As has been mentioned previously this is a rare disease with an incidence of “1-2 cases per million” ( http://en.wikipedia.org/wiki/Paroxysmal_nocturnal_hemoglobinuria#Epidemiology ). Thus the drug company can only expect to treat about 70 patients in Canada with which to recoup their costs. This assumes all patients would benefit and the company can get to them. Alexion is a small pharma company they have very little to diversify their costs and so have to charge the high price.
But life is sacred and pharma is making money from sick people! Nobody is arguing that the sick should be taken advantage of. Quite the opposite, the Canadian system is celebrated as on of the best in the world because it provides the greatest benefit at the lowest cost.
It is built for this purpose. It was designed, legislated and constructed specifically to minimise costs whilst maximising benefit for the whole country. This is where ethics come in and to argue the ethics of a nationalised health service is really pointless now. Suffice it to say that the Canadian health system is constructed to treat as many people as possible at the lowest cost possible.
As for Pharma making money off of sick people, I counter with Pharma companies do not make people sick. In fact, often it is people who make people sick. I don’t see you guys up in arms about Intel, or Razor or Blizzard or any other company that vicariously supports a sedentary lifestyle. Lack of exercise and the increase in sedentary lifestyle is a known risk factor for diabetes and heart disease. So why should we support companies that support such a lifestyle?
But Probulous, Pharma companies need sick people so they can make money. I will concede that if there was no sickness there would be no need for pharma companies. There would also be no need for hospitals or doctors. Are they evil as well?
So what do we do? This is the question that should be asked. I assume that this person has already approached the company directly for support. Most large companies have a compassionate use program but as mentioned Alexion is small. Moving countries isn’t going to help because, as mentioned, Canada has one of the best systems in the world. There may be countries where this is listed but good luck getting in with the condition. I guess you could try and look for a trial that is enrolling?
Probulous, you are a heartless bastard! Maybe I am, I don’t believe this is the truth but it is not beyond the realm of possibility. I feel for this young man, no-one enjoys making these decisions. It is an ugly reality that rationing of medication is real and cannot be avoided. Unfortunately, this is reality.
Please if you disagree with what I have said, outline where and how you disagree. Otherwise this discussion just descends into rhetorical shouting matches.
Very good post and well researched.
I just want to point out, however, that the vast majority of pharma, especially the bigger ones, make way more money on their drugs than they spend on research. My friend is the head of a drug testing company based in China that does drug tests for both American and Chinese pharma (it's in China 'cause tax is easier or something iunno).
Even though research for one round of new drugs will cost up to or around a billion USD, the thing is, the drugs that do make it through are very often charged astronomical cost, such that they can make a LOT of $$$ for it. The reason is NOT purely due to "covering research costs." It's because patent laws are strange and incomplete. Once a drug comes out onto the market, it's only a matter of time before another pharma is able to make their own copy of the drug. Usually by altering the makeup of the drug with some inactive ingredient/chemical. Of course, it's much more complex than I can describe, but the basic premise is quite simple. What does this mean? It basically means that the pharma that develops the drug originally will only have a small window of time where they can make maximum profits. As such, they will crank up the price of the drug to extremely high, sometimes extortionate prices before the inevitable copies come out.
Pharma companies exist to make money. They do that very, very well.
In the OP's friend's case, however, is a little more unique. The above process I described is usually for medication for diseases that aren't all that rare. In this case, the OP's friend's illness is so rare , that's is completely impossible for the company to make any kind of profit, or even to attempt to break even on costs, without charging an astronomical amount for it.
This case is tragic and I truly wish there was something that could be done. But the fact of the matter is, pharma is a business, and a very well-run, fined tuned business. I wish the OP and his friend good luck. Definitely try to get some donations; it may help... :\
I wonder if a creative solution is possible in this case.
If I was in the OP's friend's shoes, I would approach the company with the following offer:
50% of my income for the rest of my life (while I'm on the drug), on a progressive scale, until that amount reaches the market price of the drug, whereupon I will pay the market price.
This takes the following into account:
It is a rare disease and they can only make money off so many people.
I am one of those people.
I will have the disease for the rest of my life.
I will die if I don't get the drug.
The marginal cost of providing the drug is below my annual payments.
Pharma companies want to maximise their profits.
The idea here is that if I die, they won't get any money anyway. But if I can demonstrate to them that the price that are charging is beyond my ability to pay, I can give them the ability to price discriminate. So long as my payments cover the cost of manufacturing the drug and give them a healthy profit (remember to account for overheads like administrating the agreement, legal risks, etc.), then it's worthwhile for them to accept it.
As for me, it would be a choice between death and any alternative I can find. Sure, lobbying would be an option - but then consider the probabilities of success. There's no reason we can't do both - make this agreement, then lobby (I doubt any government would subsidise such a drug). Just make sure to consult a lawyer and be sure to cover all contingencies in the agreement. Contingencies I would consider include how things should work out if a newer, better drug is later developed, if the government decides to cover this drug, if I can now afford the drug...it's something you have to sit down and plan out thoroughly with legal professionals.
There may be obstacles to this sort of contract. For a start, it might violate some law - there might be a law that prohibits contracts that result in such wage slavery. There might not be an explicit law, but there might be precedents where the pharmaceutical company is worried that it cannot actually enforce the contract. In these cases, the obstacle to tackle is the law.
There may be obstacles in the form of competition laws - particularly regarding price discrimination. The law might step in and say that pharma companies must charge all their customers the same price.
There may be other strategic considerations we haven't considered - the pharma might be worried about what effects this will have on their future sales, their PR, and such. Perhaps a large pool of their customers also have lower income like your friend but have rich relatives, and they risk losing that revenue. Maybe there will be backlash from the public who do not understand the agreement your friend makes. Their previous customers may quit work to claim the drug at a lower cost. So your agreement must be sufficiently hard in order to discourage others who can afford the drug from taking the cheaper option, or it must be done in absolute secret.
And if the drug actually does cost $500,000 to manufacture, then there's not much you can do.
That certainly is a creative solution.
However I think you found the major hurdle.
For a start, it might violate some law - there might be a law that prohibits contracts that result in such wage slavery.
Whilst the contract could be pitched as similar to a home loan, it most certainly would not pass the newspaper test. "Major Pharma company indenturing man to pay for life saving medication", doesn't go down well.
I do think the best solution is to approach the company. Specifically if he has some sort of PR leverage, it would be even better. For example a newspaper article, petition, anything that shows he is more than one person.
As mentioned previously this sounds like a monoclonal, which are very expensive to produce and administer. Offering PR opportunities might help lessen that cost.
Create some online donation / petition / thingy and get all canadian citizens to pitch in.
...
ok this sounds like a joke, but some japanese family did this for their daughter's heart transplant and got like $300K from donations... they probably had TV exposure too.
I wonder if there's any government in the world that subsidises all life-threatening medications?
Ironically, the United States. Thanks to dear old George W. Bush and Medicare Part D.
I actually looked this up because I thought it was interesting:
For beneficiaries, the plan covers 75% of prescription costs above $250 per year. The recipient has to pay an initial deductible of $250, then one quarter of the costs from $250 to $2250. From $2250 to $5100 per year, the beneficiary pays for all of those costs out of pocket, and any costs above $5100 are completely covered by Part D insurance.
So assuming 500k per year, the total is $250 (deductible) + 500 (1/4 from 250 to 2250) + $2850 (full amount from 2250 to 5100) = $3600/year. That's actually quite ironic that we have the legislation to cover costs like these in our "wrong" healthcare system, while the "right" system can't.
On June 23 2011 11:52 cLutZ wrote: Pretty sure the rare blood disease, not the cost is the death sentence.
You realize that his friend is going to die right... this shit is what you come up with when reading something like this? Go be a wise-ass somewhere else.
He made a good point, you didn't.
If hes going to die anyways, is it really so stupid to put all his effort into getting the medication by any means necessary?
Although this may sound sarcastic, I swear I do not intend it that way; but the quality of opinions and research by several of my fellow TL members really impressed me today. Too often, people spew stuff out on the internet without research or based solely on emotion, but today there was some excellent commentary on both sides. On a side note, I am glad someone else brought up the patent costs, and the research costs that have to account not only for the research that it costs for a successful drug, but also the research costs involved with the many failures. Likewise, some of the solutions offered were very unique and compelling.
On June 23 2011 10:00 Probulous wrote: Calm down people, there is no need to get hysterical. You can't discuss with someone if they are shouting at you.
There seems to be a lot of meaningless platitudes in this thread, which is a disservice the OP. So here are some points to consider. If you don't like them or have a counter argument please use some facts and figures so the discussion moves on.
Is developing a drug expensive? This is a complicated question because the price is determined by many factors. Mostly it is due to the following:
Research Costs including Clinical Testing
Regulation costs including compliance testing, application costs
Cost of drugs that don’t make it.
Production costs of the drug including shipping, storage and administration
The number of patients required per trial depends on the expected benefit as well as expected toxicity profile, however most registration trials have a minimum of 500 patients.
Thus we can expect using rough estimates that each registration trial would cost approximately $26,000 x 1000 = $26,000,000
That is a big number. Even if my number estimates are high (I can tell you they are an underestimate), you are still looking at millions of dollars per trial. Now this is only the successful final phase III trial. There are also the previous Phase I and Phase II trials, which have costs of $1.5 Million (100 pts at $15,700 per patient) and $400,000 (20 patients at $19,300 per patient).
This doesn’t include the other costs of development including side trials for clarifying indication scope, toxicity effects, additional indications, local populations, costing trials and the list goes on. So for a drug that miraculously reached Phase I with no costs, had a perfect phase I,II and III trial, the total clinical costs would be approximately $28 Million
Now consider that most drugs have multiple clinical trials running. An example being one of our new compounds have 9 different registration trials running at the moment and you immediately up the costs to the almost $300 Million.
Less than 5% of cancer drugs that reach animal testing phase ever get to market. Whether the company makes a profit on those 5% is not certain. Most drugs don’t even get to animal testing phase. I work for a large pharmaceutical company, where we run over 1 million unique screenings a day looking for potential target matches.
This is pretty decent description of what happens during development. Or alternatively
Now if you have a problem with accepting that bringing a drug to market is expensive please provide some counter argument as to why this is not the case.
Why is he being charged $500k for a life saving drug As has been mentioned previously this is a rare disease with an incidence of “1-2 cases per million” ( http://en.wikipedia.org/wiki/Paroxysmal_nocturnal_hemoglobinuria#Epidemiology ). Thus the drug company can only expect to treat about 70 patients in Canada with which to recoup their costs. This assumes all patients would benefit and the company can get to them. Alexion is a small pharma company they have very little to diversify their costs and so have to charge the high price.
But life is sacred and pharma is making money from sick people! Nobody is arguing that the sick should be taken advantage of. Quite the opposite, the Canadian system is celebrated as on of the best in the world because it provides the greatest benefit at the lowest cost.
It is built for this purpose. It was designed, legislated and constructed specifically to minimise costs whilst maximising benefit for the whole country. This is where ethics come in and to argue the ethics of a nationalised health service is really pointless now. Suffice it to say that the Canadian health system is constructed to treat as many people as possible at the lowest cost possible.
As for Pharma making money off of sick people, I counter with Pharma companies do not make people sick. In fact, often it is people who make people sick. I don’t see you guys up in arms about Intel, or Razor or Blizzard or any other company that vicariously supports a sedentary lifestyle. Lack of exercise and the increase in sedentary lifestyle is a known risk factor for diabetes and heart disease. So why should we support companies that support such a lifestyle?
But Probulous, Pharma companies need sick people so they can make money. I will concede that if there was no sickness there would be no need for pharma companies. There would also be no need for hospitals or doctors. Are they evil as well?
So what do we do? This is the question that should be asked. I assume that this person has already approached the company directly for support. Most large companies have a compassionate use program but as mentioned Alexion is small. Moving countries isn’t going to help because, as mentioned, Canada has one of the best systems in the world. There may be countries where this is listed but good luck getting in with the condition. I guess you could try and look for a trial that is enrolling?
Probulous, you are a heartless bastard! Maybe I am, I don’t believe this is the truth but it is not beyond the realm of possibility. I feel for this young man, no-one enjoys making these decisions. It is an ugly reality that rationing of medication is real and cannot be avoided. Unfortunately, this is reality.
Please if you disagree with what I have said, outline where and how you disagree. Otherwise this discussion just descends into rhetorical shouting matches.
Great post and research. I wholeheartedly agree, and this is not taking into consideration several other costs to developing drugs which are not as public, which includes IP management (Deverlopment, acquisition, protection), Pharmacovigilance protocols, Regulatory affairs. For every drug all these have to be implemented, even if they fail along the way in clinical trials, the cost for drug development is enormous. IP management is especially expensive because there are so many patent thickets for every molecule, recombinant organism, production method, analysis method, formulation, you name it. To use them even to go to R&D and Pre-Clinical you need to get a license to use any of these if they are under protection.
A positive outlook for the future though is the advent of generics (small molecule based drugs) and biosimilars. There are a lot of new biotech companies emerging around the globe making these drugs for a very reduced price because these companies do not pay for the development of the drug. Every time a generation of drugs loses patent protection these alternatives come into the market and they are able to be included in more health plans. One of the main points behind the reforms in the US in 2010 were instructing FDA to implement a framework for a registration pathway for biosimilars akin to the Act passed for generics (http://en.wikipedia.org/wiki/Hatch-Waxman_Act). For example, the best selling drug in the world, Lipitor (Atorvastatin) comes off patent protection in 2 weeks. Ranbaxy Labs struck a deal with Pfizer to delay the U.S. launch of the biosimilar version until November though.
From a regulatory perspective these years to come will shape the policy of healthcare in medium term.
This is a sticky issue. I couldn't see the government justifying 500k a year for this guy even though I'd like to think they should. Problem is, would the government justify 500k a year for the son/daughter of Stephen Harper?
All I can say is, try and get publicity, the more people who know about his situation I feel it will only get better. Other than that, best of luck to your friend, hope something works for him.
500k/year for one person who is sick and needs this treatment for the rest of his life. You'll forgive me if I personally don't think any government (taxpayer money) should pay for this. Yes, corruption is wrong and I'm sure lots more money has been embezzled and stolen by politicians. Go ask those politicians for the money, because taxing any population with 500k a year just for one person's benefit is selfish and wrong.
There's an upside to the capitalism of pharmaceuticals, and the upside is that the majority get treated. The majority receive the cure. More lives saved/benefited. Why should companies dump their money into cures that only a very small minority need? What about diseases that run rampant, epidemics that claim millions of lives annually? I feel bad for the kid, I really do.
The solutions aforementioned showed creative genius, but lack in practicality. The kid is a lost cause unless someone wants to sink money into his treatment with pretty much 0 return. Charity is not unheard of, but attempting to find charity of this magnitude is like trying to make a candle burn at a temperature hotter than that of the sun. I think he should fund-raise, or do that app thing people said, but at best that will be one year's treatment.
I think our attention should be turned to why this treatment costs so much. If we can lower the cost, we can potentially save the next PNH patients that come along later. Ethics are always a touchy issue.
To those saying that the cost of the drug should be lowered, I'm here to tell you that the majority of the cost is actually related to the production of the drug, not the R&D that went in to it.
The drug type is called a humanised monoclonal antibody. Humanised monoclonals are a relatively new drug and are all really expensive. Some being used now are Avastin for cancer and Humira for a number of inflammatory disorders. These 2 drugs alone make around $10Billion in sales a year so the cost associated with production is a major area of research. Basically these drugs stick to the protein that are causing the problem and inhibit its activity. There are 2 reasons why it is expensive.
Firstly, to design and make a humanised monoclonal is not easy, it is basically a very complex molecule that is engineered to stick only to the target protein. These drugs are not like antibiotics which are mostly relatively simple molecules that can be mass produced. It involves pretty complicated genetic manipulation to produce a gene for the antibody and subsequent cloning into live cells that then produce the antibody. Keeping the cells alive/recovering and purifying the antibody is then another expensive process.
The second problem is the amount and frequency the antibody is required to be given. Because the antibody works by binding to the protein causing the problem, as the body produces more of the problem protein, more antibody needs to be administered to block its activity. C5 (the protein causing the problem here) is produced relatively quickly and in great abundance in the blood so this drug needs to be given often and in high quantities.
Together this is what makes the drug expensive.
To put this into the bigger picture, there are many drugs like this, currently very expensive to make but can have some pretty amazing effects. What has happened in quite a few fields is that scientists have become really good at identifying very specific problems that occur in diseases and awesome ways to fix those very specific problems. However, what happens is that less and less people fall into the specific categories. This means the market for the really specific drugs is much smaller. With time and research the costs of production will come down and the drugs will be more available, its just such a shame that some people are in a race for their lives until this happens.
Edit: I just did some calculations of how much it would cost me to make and purify enough antibody if i had the antibody producing cells given to me (the bit that takes years of research by drug companies). 23.4g is the annual amount required it costs me ~60$ to make 1mg of Ab $60 x 23400 = $1.4 million Obviously drug companies benefit from economies of scale but you get the idea.
On June 22 2011 11:31 Voltaire wrote: I thought Canada had universal healthcare? Or is this friend in the US?
Just because we have universal health care, doesn't mean we still don't pay for medication we need to take.
This is unfortunately true. Before you buy an insurance plan they have a contract that lists all of the drugs that they will cover. I have very good health insurance and it wouldnt even cover "Chantix," the anti/quit smoking drug. I wish everything was that simple. Good luck to you bro. My prayers are with you.
On June 23 2011 04:45 Baarn wrote: It's too bad drug companies don't have to conform to Duty to Rescue.
If they did then they would simply stop doing research on all rare conditions and only develop drugs likely to turn a huge profit, and that's if they don't simply go out of business. Your bleeding-heart view doesn't look very far.
On June 23 2011 11:37 summerloud wrote: in a thread like this im almost 100% sure i could guess all the posters that are from the united states just by reading their posts
you guys have funny ideas about how economics should work and about "personal responsibility"
so yeah, fuck this guy for not having enough money, drug companies need their profits as well, he should just develop an iphone app and make a quick million if he wants to live
and its prolly his own fault for getting this disease anyways, right?
I think it's funny that so many people expect a private company to spend billions of dollars in "charity" so that they can save a few lives and they are assholes for not doing it, but nobody says anything about the government that has 10x the budget of the pharma company refusing to pay for treatment that can save a man's life.
GL to you and your friend. It sucks we can't afford treatment for every single illness/patient on the planet but such is life.
I am relieved to see 500k tax money won't be used to save one guy. You may think i am douche, no i am a realist and you are an utopist if you think we could afford to cure every single illness on the planet.
Honestly his only chance is an online donation drive.
To those saying that the cost of the drug should be lowered, I'm here to tell you that the majority of the cost is actually related to the production of the drug, not the R&D that went in to it.
The drug type is called a humanised monoclonal antibody. Humanised monoclonals are a relatively new drug and are all really expensive. Some being used now are Avastin for cancer and Humira for a number of inflammatory disorders. These 2 drugs alone make around $10Billion in sales a year so the cost associated with production is a major area of research. Basically these drugs stick to the protein that are causing the problem and inhibit its activity. There are 2 reasons why it is expensive.
Firstly, to design and make a humanised monoclonal is not easy, it is basically a very complex molecule that is engineered to stick only to the target protein. These drugs are not like antibiotics which are mostly relatively simple molecules that can be mass produced. It involves pretty complicated genetic manipulation to produce a gene for the antibody and subsequent cloning into live cells that then produce the antibody. Keeping the cells alive/recovering and purifying the antibody is then another expensive process.
The second problem is the amount and frequency the antibody is required to be given. Because the antibody works by binding to the protein causing the problem, as the body produces more of the problem protein, more antibody needs to be administered to block its activity. C5 (the protein causing the problem here) is produced relatively quickly and in great abundance in the blood so this drug needs to be given often and in high quantities.
Together this is what makes the drug expensive.
To put this into the bigger picture, there are many drugs like this, currently very expensive to make but can have some pretty amazing effects. What has happened in quite a few fields is that scientists have become really good at identifying very specific problems that occur in diseases and awesome ways to fix those very specific problems. However, what happens is that less and less people fall into the specific categories. This means the market for the really specific drugs is much smaller. With time and research the costs of production will come down and the drugs will be more available, its just such a shame that some people are in a race for their lives until this happens.
Edit: I just did some calculations of how much it would cost me to make and purify enough antibody if i had the antibody producing cells given to me (the bit that takes years of research by drug companies). 23.4g is the annual amount required it costs me ~60$ to make 1mg of Ab $60 x 23400 = $1.4 million Obviously drug companies benefit from economies of scale but you get the idea.
^^ This is good post worth reading. I hope people realise there is a reason these drugs are so expensive.
On June 23 2011 04:45 Baarn wrote: It's too bad drug companies don't have to conform to Duty to Rescue.
If they did then they would simply stop doing research on all rare conditions and only develop drugs likely to turn a huge profit, and that's if they don't simply go out of business. Your bleeding-heart view doesn't look very far.
Cus a cure for cancer/aids would be so horrible..
The intersting thing about "Duty to Rescue" also known as "Rule of Rescue" is that it is up to the purchasers to follow, not the companies. It is simple economics really, if the purcahsers won't pay for drugs that saves lives, then there is no incentive to research them.
As mentioned previously, some countries (Australia for one and I am pretty sure the FDA has similar provisions), has a rule where drugs that treat illness with very low incidence get priority review. In Aus, what this means is that if the medication treats less than 2000 patients, in other words the disease is rare, the review for reimbursement is stipulated at less than 6 months. This is a clear incentive to investigate rare disease cures as getting to market early effectively extends the patent.
EPT
It'll take a miracle for the price to drop fast enough.
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