I submit that there's more to this story than "pharmaceutical companies weren’t interested in developing the therapy".
The Juvenile Diabetes Research Foundation http://www.jdrf.org/ funded $100 million dollars of research last year alone into research for juvenile diabetes (type I). Link: http://www.jdrf.org/index.cfm?fuseaction=home.viewPage&p... Funding is predominantly from individuals and families searching for a cure for diabetes. That includes people like myself and my family. We could care less what mechanism or what business model cures diabetes.
Lastly, the head of JDRF is a tech star. http://www.jdrf.org/index.cfm?page_id=113971 He founded Citysearch and Overture (the originator of keyword marketing. Bought by Yahoo).
I'm a big JDRF supporter since my sister has Type 1 diabetes. For any of you that are passionate about curing Type 1 diabetes, look into JDRF. Link: http://www.jdrf.org/
I always read things like this with a hefty grain of salt.
To say that all "pharmaceutical companies" blocked him on this because treatment is more profitable than cure seems rather absurd. You would think that with all the non profits out there already involved in solving this, there would be quite a few with interest in the research.
Also, as most startup people know, a short term large profit is awesome! Any company that truly finds a cure would make buku bucks in the short term and be able to bail from the market when everyone that can be cured is. Think about polio and Salk. The guy became a legend, and though it isn't talked about, decently rich.
Hacker News reminds me of my first year of med school. Everyone is smart and fundamentally clueless about human pathophysiology. It's a wonderful thing, learning about the fruits of devilishly challenging science. But it's also a conspiratorial time. I suspect the reason is that first year med students suddenly feel empowered by the small amounts of knowledge that they have gained. HNers probably feel empowered for a different reason: that they are extremely good at rapidly acquiring new ideas and implementing them.
This is normally a great thing, but it opens up two risks: the blind leading the blind, and conspiratorial thinking.
The blind leading the blind is what happens when someone has an idea about a disease or treatment, finds one article in pubmed or one book by one author to support that idea, and proceeds to remain ignorant about the entire rest of the body of work on the topic. It's almost like a race: if the good information gets there first, people believe it; so too for the complete hogwash in Medical Hypotheses.
The second issue that plagues first year med students and HNers is conspiratorial thinking. This is largely a consequence of having little knowledge, and this finally brings me on topic.
This current article discusses how someone was denied funding for human trials of stem cell therapy despite the fact that it cured T1D in animal models. When I see this, I think, "Of course nobody would have funded that!" Here's why I think that:
Ten years ago, stem cell biology was far more limited than it is now. And I'm talking strictly about biology, not ethics or politics.
The first gene therapy trials resulted in the death of Jesse Geisinger; though stem cells are a different beast entirely from the viral vector used in that trial, this still cast a pall over the use of active biologics.
Using stem cells that do not come from the recipient may require immunosuppressive drugs. This is such a high burden to pay that it seems inconceivable that someone would take this risk. I'd rather inject insulin all day long than be on immunosuppressive therapy. Induced pluripotent stem cells did not become a possibility until Yamanaka discovered his factors.
There is the risk that stem cells will lead to tumor-like conditions. A woman died in 2009 from an unlicensed stem cell therapy that caused just that. Animals are the model in which we should fully understand these risks, subjecting humans to them only after we understand what the risks are, and why they might occur. Especially for T1D, which has very good, lifesaving therapeutics already. The human risk-benefit has to be there.
People often work on animal models for years, even a decade, before going to human trials. This fuy had a successful mouse model. So far, so good. But let's see primate work; let's see replication in other labs.
At the end if the day, this just doesn't seem like a conspiracy to me. Some small drug company would love nothing more than to completely disrupt the market for diabetes therapeutics. Sure, it might transform a $100 billion market into a $10 billion one - but they currently have 0% of the 100 billion market, and would have 100% of the 10 billion one.
Tl;dr - Stem cell biology is novel and poorly understood, especially 10 years ago. It is unsurprising that nobody wanted to fund a highly risky human trial for a disease that already has lifesaving therapeutics. I find conspiratorial thinking to be a trait shared by those early in their medical training and by HNers, and it can be frustrating to see great minds turn to those rarely-correct conspiratorial thoughts.
Well said. Another failing arises from just how complicated biology is, and how little we understand of it. Unlike in computer programming, in biology reliable layers of abstraction do not yet exist. The equivalent of changing one line of code in a cell's program (through a drug, gene, whatever) in a sense has unknown side-effects on every other line of code. A programmer's approach to working with or trying to understand such a system quickly leads to maddening (and unsupported) conclusions.
in biology reliable layers of abstraction do not yet exist.
In biology, reliable layers of abstraction do not exist. Period.
Biological technologies may arise with enough flexibility and processing power to deal with this situation. But situation itself won't change. Life simply evolved without fixed boundaries to its layers of abstraction. Every bit of evidence we have points to the genetic code as being more akin spaghetti coded assembly language than to any human-comprehensible programming language. Why would the genetic "programming" system respect any layers of abstraction understandable by humans? Life's been chugging away with 4 billion years of "whatever works".
Roge J. Williams' work early in the 20th showed how in just about every single biochemical system in the body, something like 20+% of the population and that with these outliers not correlating, every person's biochemical system actually work in somewhat unique fashion. That is hard manage and control from an engineering perspective, to say the least. See http://www.amazon.com/Biochemical-Individuality-Roger-Willia...
It seems inconceivable that, with random combinations of biochemistry and no "layers of abstraction", that anyone survives. Spaghetti code generated at random always fails, period.
I imagine "layers of abstraction" may not exist, but common nodes of behavior, clusters of biochemical solutions bound by genetics, MUST exist or we would all be still born.
While I can't really disagree with you, I don't think it's crazy to think that there are many influential people and organizations that have a strong interest in seeing that we avoid potential cures for common diseases. As such, I don't think this type of reaction is necessarily based largely in ignorance.
Then again, I'm largely ignorant on this subject so I'm certainly not making any accusations in this case.
One such case is of Barry Marshall and H.Pylori, he was awarded the nobel price in 2005 for discovering the cure to ulcers, (antibiotics) but he first discovered the cure in 1983 and after about 10 years of 'trying' to convince the medical community of which (Glaxo who was dominant in that market) was making 90% of their profits from Zantac (an anti acid treatment) - (known inside as the 'Zantac years'), they were accused of thwarting his discovery. Tired of the lack of interest, in about 1992 he did a live experiment on himself by swallowing a wapping dose of H.pylori and induced an ulcer, then proceeded to cure this with a course of antibiotics. He did this in the glare of the media and thereby changed the course of treatment worldwide for ulcers... How many would do that?
However, I agree with the point though that too many HNers often seem to be naive about the larger picture which I guess we could all be accused of in some way.
Barry Marshall did not have to convince Glaxo Kline Smith. He had to convince other doctors and scientists. I don't believe that companies can often keep genies in bottles, but dogma and groupthink is another matter.
He was also ignored totally by all the main stream publications, it was later alleged they had close ties to Glaxo and the editors were fully aware of the significance the impact would have had on Glaxo.
The article claims, without evidence, that Nature and Science didn't publish Marshall because of ties with Glaxo. Even if that's true, there are a lot of other journals out there. Are they ALL in Glaxos pocket?
I doubt it. But they're all reviewed by his peers, who made a living by giving endoscopies and prescriptions to patients every year or so.
Peer review is usually by scientist peers, and not professional peers. I doubt that most academic researchers in medicine were prescribing anything, really.
"Perhaps more important was that the subject, who was none other than Marshall himself, failed to develop an ulcer. Note also that the disease resolved without treatment."
This story suggest that he didn't get an ulcer (but he did get all the first symptoms) and that he didn't treat it with (antibiotics) which he did and which eventually cured his own symptoms (and nearly cost him his marriage as his wife left him shortly after doing this).
"As with many tales of dedicated discoverers, you marvel at the tolerance of the family. When Marshall conducted his experiment on himself, he and his wife Ariadne, a psychologist, had four children aged between 10 and 3. He didn't inform Ariadne, or any of his colleagues, about what he was doing, mainly because he knew they'd object.
“I'm a selfish so-and-so”
“A few days after taking the bacteria I began to feel this heavy fullness after eating, and then on day five the vomiting started. One of the reasons I didn't tell my wife about it was that she had whiplash from a car accident. There was a lot of chaos in the family and in the middle of this each morning I would wake before dawn and run to the toilet to vomit. I had bad breath and I looked terrible. You have to admit I'm a selfish so-and-so to even go ahead with the experiment.”
Ten days after drinking the bacteria, Marshall had an endoscopy and other tests to show that his previously bug-free stomach was thoroughly infected and that he was showing the same signs as his patients.
“At that point I couldn't restrain myself; I had to tell the wife. She was speechless.” He laughs. “But it's easier to ask for forgiveness than permission.” She insisted that he took antibiotics to clear up the infection straight away, though Marshall wanted to continue until he had a full-blown ulcer."
Also gastronome enteritis and related diseases was responsible for over 5k deaths (globally) -- a week -- during the period it was known but not accepted 1983 - 1997.
"Marshall swallowed a culture of the bacterium. A week later, he began suffering acute symptoms of gastritis, and biopsies revealed that he had developed both infection with H. pylori and severe acute gastritis. Fortunately, the sequel was a successful case of "Physician, heal thyself"!
further:
"At this stage, bismuth subcitrate was commonly used to treat ulcers, although it was uncertain how the drug worked. Marshall surmised that it might kill the H. pylori bacteria, and he subsequently discovered that a combination of bismuth with antibiotics completely eradicated the bacteria. He then set out to test the hypothesis that elimination of H. pylori could result in a permanent cure of gastric ulcer."
"From 1985 to 1987, Warren and Marshall studied the use of antibiotics as treatment for ulcer. Their finding that 80% of patients were permanently cured of their ulcer if H. pylori were eradicated, proved a landmark in clinical gastroenterology practice. It resulted in a complete reassessment of ulcer treatment, and this therapy is now accepted as an essential part of the management of ulcer disease."
> I don't think it's crazy to think that there are many influential people and organizations that have a strong interest in seeing that we avoid potential cures for common diseases.
I do.
How about some evidence show that this has happened more than a handful of times in the last 20 years?
Note a company refusing to fund a competitor is NOT evidence of "avoid potential cure". Heck - a company refusing to fund something for eany reason is not evidence.
The act that you need to document must be someone going out of their way to block something, not merely refusing to help.
I was simply making a point that there are people that have a strong financial interest that a cure would compromise. That's simply a fact. I didn't go any further than that because I'm sure I'm less qualified to do that than many others here.
My cynical side might think that there are people that would go a long way to protect their financial interests.
I'm sure the shareholders of Eli Lilly, Novo Nordisk and others would like to squelch a cure for diabetes to protect their markets, just like any established company would like to squelch disruptive technologies. So what? What are they going to do about it if some startup cures diabetes?
That's all you really need to know about any story about big, evil companies supposedly suppressing new technology.
You seem to have assumed something over here. That,
a) A Start-Up has that type of money
b) They'll be willing to invest in something so risky.
As others have pointed out there are StartUps with the money, but somehow we still don't hear about orphan drugs with potential to make it burst onto the scene. Why not? I think that the second factor is more at play over here. Ultimately it comes down to the cost vs. benefit analysis.
Imagine this you are a VC with a $100 mil. to burn will you support a long and twisted development process of something that might not even work at the end?
You might argue that the benefit is that you might become the up and coming Google of pharma, but try telling that to any smart VC.
This is why we need something more than a profit based industry for something that forms the basis of our society. On one hand people talk about freedom, and especially how it's related to the freedom of the markets, and on the other you trap them with the very failings of their bodies.
Perhaps, I am wrong, but this is something that we all need to think about. What do we value more as a species money or wealth? I wish I knew the answer.
>As others have pointed out there are StartUps with the money, but somehow we still don't hear about orphan drugs with potential to make it burst onto the scene.
Imatinib. It was developed as a cure for CML, a disease which only affects a few thousand people in the US. That's just the most notable. From wikipedia's article about orphan drugs,
"In the USA, from January 1983 to June 2004, a total of 1,129 different orphan drug designations have been granted by the Office of Orphan Products Development (OOPD) and 249 orphan drugs have received marketing authorization."
>Imagine this you are a VC with a $100 mil. to burn will you support a long and twisted development process of something that might not even work at the end?
The fact that pharmaceutical startups exist (google pharmaceutical startup or something like that and you'll find plenty of them) show that VCs, or whoever it is who invests in them, have different ideas about risk than you do.
>"In the USA, from January 1983 to June 2004, a total of 1,129 different orphan drug designations have been granted by the Office of Orphan Products Development (OOPD) and 249 orphan drugs have received marketing authorization."
Thanks. I realize my mistake now. I meant it as in how many new companies try something as risky as making an orphan drug? I shouldn't have leaped in with a bad example without checking it more thoroughly first.
Sorry.
>The fact that pharmaceutical startups exist (google pharmaceutical startup or something like that and you'll find plenty of them) show that VCs, or whoever it is who invests in them, have different ideas about risk than you do.
My point over here was that they fund them, but they might not fund something as risky as stem cell therapy. As far as orphan drugs and StartUps go; is there an data freely available online on the composition of companies that market orphan drugs?
Treatments for rare diseases actually have fewer regulatory hurdles because of the Orphan Drug Act, which basically says that there's a lower standard of evidence for drugs that treat rare diseases.
>My point over here was that they fund them, but they might not fund something as risky as stem cell therapy.
Maybe not, but maybe that's a good thing, for reasons carbocation stated.
>is there an data freely available online on the composition of companies that market orphan drugs?
There's a list of drugs here (well, do a search on an empty string and you get a list) and the companies who make them, but it's not exactly predigested.
>This current article discusses how someone was denied funding for human trials of stem cell therapy despite the fact that it cured T1D in animal models
Weissman is not "someone". He is one of the founding fathers of the stem cell field and has done amazing thing. He is a leader in the field and got really amazing results with animals. Sorry to say that but you sound like the first year student here.
Your comment comes off like a mix of appeal to authority with a touch of ad hominem. Do you disagree with what I've written? Is my failure to explain why 'this "someone" is a big deal' (which I felt was pretty well explained in the article itself) your primary concern?
In my other comments on this thread, you can see that I feel his work is important. So if you're concerned, as is implied in your language, about my respect for his work, you can rest assured.
There's one area where variations on Conspiratorial Thinking happens regularly and much of the population has their minds bathed in the result every day.
These ideas, conceived in the medical domain, apply, in some way, to the wider world of media reports.
Ever notice that when you really know an area, news reports about it nearly always get it wrong. Completely misunderstand what's going on. Often interpret it as one of a few stock, basely motivated, scenarios.
(You can debate whether the authors are all smart. I think that some of them are, but those still do it.)
So we have a society where the blind lead the blind down blind alleys as a matter of course.
Thank goodness that we have resources like Hacker News, to sometimes give a peek at more thorough thinking. (Chaotic though it may be!)
Would it follow from your argument that Weissman is either too foolish, disinterested, or arrogant to pursue the next step of animal trials that would have made human trials more likely?
My sense is that he followed the basic science, working deeply in stem cell biology and adding significantly to our knowledge. This is another important route to convincing people that they should pursue something like stem cells - if you know how they do what they do, then you can make educated guesses about how to prevent side effects, too.
So, to the contrary, I think he's done many things over the past 10 years to make human trials possible!
Stem cell therapy is not likely to be curative for Type I DM, although this is simply my opinion and I have no evidence to support it. Part of this is definitional. A true cure for Type I would involve stopping the autoimmune attack of the pancreatic islets.
A therapy that's as good as a cure (such as one that is stem cell based, or otherwise) does seem likely in the next 15 years to me. I've worked on this problem briefly; my role was miniscule, but the basic idea is that you can encapsulate beta cells in an artificially immunologically privileged space, such as an alginate capsule. If done just right, this will let you sense glucose, secrete insulin, and avoid immune attack.
At any rate, yes, I think that we're getting closer to meaningful "post-insulin" therapeutics. Whether or not that will be due to stem cell biology, I don't really know; to be honest, I don't really mind what technique is used so long as it is safe, effective, and maximizes the patients' quality of life.
For some reason I can't reply to carbocation, but in reply to his objection that stem cells wouldn't help due to the autoimmune issue, there's a lab that claims to have solved that problem in mice. Apparently, when you get rid of the autoimmune cells, the insulin-producing beta cells grow back. The lab claims to have had a successful phase I (human) trial. If they're right, stem cells are irrelevant. I don't know enough to really evaluate this, but these are definitely serious people.
There's research going on for MS, another autoimmune disease, which also involves getting rid of the autoimmune cells. Here's one approach: http://en.wikipedia.org/wiki/Tovaxin
If they can get this kind of thing right, we'll live to see many autoimmune diseases cured.
Excellent! This is the type of thing that gets me more excited, because it's treatment targeted at the cause of the disorder. (Stem cells will be so for certain diseases, too.) I hope they succeed.
It seems like we can also forget about MS being an autoimmune disease - but rather a mechanical issue caused by iron deposits in the blood vessels leading to the brain:
Do you think his research will result in type I diabetes being cured in humans in our lifetimes?
Should it not be obvious that such a question exceed the ability of even the most sophisticated doctors and biologists today, not to mention anyone on HN. I'd agree that conspiracy and collusion is always part of human behavior but this doesn't prove that anyone knows the path that future efforts at cures will follow.
Suspicion or expectation of conspiracy can also be due to past exposure to evidence of actual conspiracy. Men colluding against others has been going on for thousands of years if history is to be believed. And yes one common motive to conspire is to gain large amounts of money to the detriment of another group, often involving lies and force. Are all imagined conspiracies real? Probably not. Do some exist? Of course.
There are many thousands of biotech companies, the vast majority of which do not sell drugs that treat chronic diabetes.
Any one of them would love to sell a diabetes drug that cures diabetes.
Either this researcher only courted a few companies that already sell diabetes treatments, who unsurprisingly didn't want to fund him (does Comcast fund startups that help you avoid buying cable? NO!) or there is something else about his research that made people not want to continue with it.
It's interesting to follow the scientific debate. The 2006 review sponsored by JDRF claims that the methods used by Faustman offer little promise, and can even be harmful. She offers a completely opposite view, claiming in a 2008 paper
Because our findings showing potential benefits of TNF
or TNF agonism for treating AI, it seems paradoxical
that anti-TNF therapies are a major therapeutic class
of drugs currently marketed for AI. TNF antagonists
have provided clinical benefit to about half of AI patients,
those with rheumatoid arthritis and Crohn's disease. Yet an
expanding body of research in animal models on spontaneous
autoimmunity suggests the opposite strategy may be
warranted. Furthermore, in humans, several clinical
observations deserve mention. First, many Crohn's and
rheumatoid arthritis patients never respond to TNF
antagonists. Second, long-term treatment with anti-TNF drugs
can be accompanied by onset of new or aggravated forms of
autoimmunity, sometimes new autoantibodies, suggesting that,
for some AIs, anti-TNF therapy may not be the drug of choice .
To me, the JDRF arguments sound more fishy than hers. It's a tricky business of solving puzzles like that, especially as an outsider. But it's fun to see how far one can go following the debate.
Normally it's the diabetics who make such claims about the industry--- it's a surprise (a pleasant one) to hear such come from a possible solution source! As a long time type-2 diabetic, I'm still happy for ANYTHING that may someday help my fellow type-1s...
Yep, diabetes is one of the Big Three health problems in the US, along with cancer and heart disease. There are people in my family that have it as well. And supposedly it's one of the fastest growing health problems in recent decades.
"Weissman implied that the pharmaceutical companies had put profit over principle, preferring to keep diabetes sufferers dependent on costly insulin than to cure them once and for all."
This is not fun.
I wonder when are we going to agree that you cant make business out of anything.
The great thing about the internet is now everyone can read about such scandals.
The bad thing about the internet is the noise level is so high, few will read about such scandals.
I hope in 100 years, advanced hobbyists can do sophisticated medical R&D in their garage and create small quantities of medicine for stuff that big pharma doesn't find profitable (the problem is the government will probably shut that down).
Is America the only country in the world where he could get his drugs trial tested and put into market? There are umpteen number of pharma companies in the developing countries which are ready to take a working product to their market. Why not use them?
Good point. I think the French are the only ones that develop any decent pharmaceuticals outside the U.S. One of the most successful French pharmaceuticals is Tianeptine.
It's sort of a French Prozac but with a number of unique benefits that Prozac doesn't have. It's approved in several European countries but NOT in the U.K, and is only available in the U.S on the imported pharmaceutical grey market. Once it goes out of patent, and if it has not been approved for use in the U.S, it will NEVER be approved, ever, for any use in the U.S. That's because nobody would pay the 100s of millions of dollars to approve a drug that a competitor can produce as a generic.
The article touches on one of the risks to the health care industry today, at least here in the US:
In many cases, the pharmaceutical companies are making billions by selling drugs which merely reduce undesired symptoms. But do not CURE the underlying problem. And the symptom reduction only lasts while the user continues to buy and consume the drug. Therefore, in many cases, these companies have a strong financial incentive to NOT cure a disease, instead, to prolong it and only sell palliatives. Government funding and government directed research should be one of the ways we ensure that we have people actively trying to CURE diseases. It's a classic example of an area where government can do something better than business, because there does not have to be a profit motive. Just a collective desire to reduce human suffering.
This also touches on why it's important to vote carefully in US presidential and congressional elections. Because certain political groups cater to the Big Pharma companies. A vote for them is almost certainly a vote towards a world where there are more palliatives than cures. Where even new forms of ill health can just be considered new "markets" or new ways to increase profits.
I hear this argument all the time and it ignores one fundamental fact: there is more than one large pharmaceutical company and they don't all make $disease_x_treatment.
That one company makes billions selling a treatment for a disease has no bearing on a competing company making a cure for that disease and cornering the market. If anything, it's the very definition of a market-driven solution to a problem.
Now, it's true that there are diseases which are so rare that it's not commercially worth developing a cure, and perhaps government funding is useful in that case but that's a completely different topic.
"That one company makes billions selling a treatment for a disease has no bearing on a competing company making a cure for that disease and cornering the market."
But it's actually more efficient to develop a treatment for the second company.
It's better to share an extremely big market with a competitor than to corner it while making it much smaller. The goal is not to destroy all competition, it's to make more money.
Yes, but what if you have no presence at all in that extremely big market?
In addition to the big ones, there are dozens of smaller companies with the cash and the experience in drug development that would jump at the opportunity to cure type 1 diabetes. Unless the risks vastly outweigh the rewards, which seems to have been the case here.
If you have "no presence at all" then you either have no money, in which case you can't really afford entering it (in this case, anyway), or you have the money, but then the above rules still apply. Effectively it would be better to market your mediocre product to physicians than to kill the cash-cow.
Also, large risks are actually typical for this type of research. It's expensive and risky, so it has to give really large rewards. Research for completely new cures is even more risky and expensive, and the rewards are smaller.
Google had no presence at all in the spreadsheet market in 2005. I guess they really couldn't afford to enter the spreadsheet market.
Too bad, because if google had money, and the above rules didn't apply, then google might create a free spreadsheet web service that competes with MS Excel even at the risk of destroying a gigantic cash cow owned by somebody else.
Software doesn't require clinical trials before it is approved for use. So this argument really doesn't convince me; the capital bar to new products in the medical field is truly staggering.
It's not significantly cheaper or less risky than developing and deploying a completely new type of car or space ship. So Tesla and SpaceX should not exist.
Developing a drug is also not cheaper than developing a new type of computer chip for use in tablet computers aimed at disrupting the PC market (all attempts thus far have been failures). So by your logic, Apples A4 chip should not exist.
Amazon received about $100 million at their IPO, and considerable pre-IPO money in the hopes of disrupting retail. Also a very risky proposition, which by your logic should never have occurred.
Google is trying to get 100% of the spreadsheet market with the goal of selling ads and maybe some corporate subscriptions.
If successful, they will destroy a vastly larger market (commercial spreadsheet software). Google would rather have 100% of a small pie than 0% of a big pie.
Similarly, Diabetes Cure, Inc would rather have 100% of the diabetes cure market than 0% of the insulin market, even if the latter market is bigger.
The big companies that already have treatments for diabetes (for example) definitely have an interest in not curing it, but a small startup would be happy to make millions destroying a multibillion dollar industry.
People upvoting this are dreamers as that industry costs a phenomenal amount of money to put something through trials.
Millions is a trivial amount on what you could throw down the drain and end up with no actual product. It's not vulnerable to a startup as a startup can't practically enter that market. You'd need to be producing something else first.
And small? Not gonna cut it.
Something that works on mice and even something that looks in the lab to cure the disease often doesn't work in trials and doesn't beat the placebo effect.
And, yeah, drug development is high risk. In other news, the sky is still blue.
Type 1 diabetes is still a pretty big market even if you had a one shot cure. There are hundreds of thousands of type 1 diabetics. If they pay a thousand dollars each (a steal at that price), that's hundreds of millions of dollars. For comparison, there are a few thousand people with CML, but that didn't stop Gleevec from being developed for it (it's very expensive).
A steal at a thousand dollars ?
I have Type 1 and would consider an actual cure a great deal even if it cost everything I own plus my entire earnings for 10 years.
I believe the story of Lipitor involved Pfizer not being interested, followed by the creation of a startup around it's further development with the company eventually being bought by Pfizer. It then became the top-selling branded pharmaceutical in the world [1]. I guess the world just needs more dreamers like these people.
The small startup doesn't have the 10s to 100s of millions of dollars that it takes to get a drug approved in the US. So they would be happy to do it but are incapable.
more like 1000s of millions. It's incredibly expensive to demonstrate safety and efficacy, and many promising candidates fail at the later stages (after 100s of millions already spent) when the response in humans is different from that of animal models.
I also think that if consumers were actually paying the full direct cost of treatments, they would be a lot less willing to pay for a chronic drug habit instead of a cure.
Selling cures can be profitable too.
Consumers are perfectly able to see and pay for the benefits of a one time solution as opposed to a cheaper chronic solution. That's why they buy cars and houses instead of renting them. The market will deliver what the consumer wants if the consumer were making the spending decisions.
Government can't be somehow better than business at deciding what to fund. Its manipulated by business! The current pattern has evolved in a government funded research environment. Only ending the interference in the normal process of making decisions at the consumer level can fix this problem.
I agree with a large extent to what you're saying, but I don't like the way you've used it as a platform to presnt an anti-government opinion.
In the UK we have a government body http://en.wikipedia.org/wiki/NICE which oversees which treatments the NHS can provide. This is another way of avoiding paying for treatments rather than cures.
I suspect both a market-based approach, and a single-buyer approach can work. In the US you have a weird government supported insurance industry driven approach with leads to the worst of both worlds.
government is coercion, the use of force against peaceful people. I can't imagine why that would do anything but destroy. People look at what escapes destruction as if government created it.
yes, we have a weird government supported insurance industry driven approach that is quite distortive and destructive. I am fully in favor of ending it and letting peaceful people make their own choices.
Sorry I don't buy this. When it comes down to it, society in itself is coercion. If you don't like that you can go and live on the moon, but whilst you live with and near other people, coercion will exist.
The problem is to accept coercion and discover its most beneficent form, not eliminate it.
Most part of society doesn't involve coercion. Most of us don't go around threating people with murder because we believe it to be wrong. If most men are criminal, we wouldn't be able to have a civilization.
What people really should be striving for is voluntary alternatives to coerciveness measures, not trying to find the best form of coercion.
it is possible for people to voluntarily cooperate. they can do so in matters of mutual defense and many other things. THAT is what civilization depends upon, as a matter of fact.
In fact, this is exactly how most people live their lives. They wouldn't think of using force against others, except when it comes to defending themselves and the people and things they care about from those who use force against them.
But when people get together in a group, they suddenly feel they aren't bound by the same standards. They somehow acquire rights beyond simple self defense. And history is littered with corpses as a result.
coercion is not necessary to cooperate, to have a society. coercion IS necessary to take advantage others. that does take the use of force. people don't seem to go along with being abused willingly.
The best health advances of all time were developed by passionate, and sometimes uneducated, volunteers -- people who were not working for a profit motive, but for a good-of-all motive. Case in point: the discoverer of penicillin, and the inventor of the vaccine, the inventor of the public blood bank, and on, and on, and on.
Inventing then was (arguably) less costly and technical than it is now, because those were low-hanging fruit. A lot of the low-hanging fruit has probably been discovered by now, though we can't be sure, meaning that future research aims at higher-hanging fruit and so, metaphorically, the would-be inventors need ladders.
These people need help, not profit, because profit isn't what motivates them anyway.
Somehow it seems that the profit motive in pharmaceuticals motivates good science, but targeted at relatively strange things. "Lifestyle" drugs are huge: everyone wants the next Viagra, basically. Perhaps not surprising, because recreational drugs have always been popular, and the "fluff" end of legal pharmaceutical development is the part that sort of bleeds into recreational, since it tends to target something closer to "enhancing" the lives of already fairly healthy people with money, rather than "treating" the ill.
Viagra was discovered by accident (it was a heart medicine that didn't work out). And I've never understood why it's sneered at. Are there really that many people out there who could face no sex again ever and shrug it off? I think that would be utterly soul-crushing, worse than most of the diseases they have charity walks and telethons for.
They don't rant about it because it solves a truly-no-sex scenario, but because it's essentially a recreational drug for the majority of users.
I think the ability to have sex is at least as important as the ability to not piss yourself (e.g. incontinence medication) if not more, but still, its profit center comes from its recreational use. That's why the drug companies love it.
Because there is no reason to believe that the % of men who have true ED matches up with the amounts of Viagra sold; because I've known many young men who talk about getting drunk or high and taking it, and because their companions agreed or in the least were not surprised; because the market for it online seems to be mostly young, healthy men who want to have greater stamina, not who have anything dysfunctional to begin with...
You don't see the tremendous amount of selection bias in your sample?
Very quickly: people who need viagra don't like to talk about it, unlike drunken frat boys. The online market is targeting men who can't get it from their doctor because they don't have ED. That doesn't mean the vast majority of viagra users aren't suffering from ED, it just means that online ads are targeting a niche market.
Yes, exactly: if pharma is good business, and not philanthropy, then they have to focus on the people who will pay the most, the most readily, and the most often. End of story.
Case in point: I'm an American who lives in Vienna, Austria, and I have recurring upper-respiratory/immune system problems.
Here, I am treated with a so-cheap-it's-almost-free immune system booster called Broncho Vaxom. It's nothing but dead bacteria, but it's extremely effective (essentially an oral vaccine).
It's used to save lives of children in the poorest of nations -- but it's not available in the US, because it's not profitable, whereas continuous rounds of antibiotics are.
Coral snake antivenom is a similar thing - the last manufacturer left a supply of a few years that is now running out, but the process for approving a new manufacturer for the same drug is so expensive that the market won't support it.
So first responders in Florida have a problem. No coral snake antivenom.
A similar market situation applies to flu shots.
The current system favors "maintenance pharmaceuticals", not cures. Who wouldn't prefer to have a cash cow that costs the customer a few hundred dollars every month for the rest of their life, in comparison with something that actually cured them? A cure isn't very lucrative at all.
Generally, free marketeers protest that this isn't true, in the face of all evidence I can see, but look at the business logic; it's inescapable.
A free marketeer, as you say, would say that the reason nobody is making more antivenin is because the "process for applying" is so expensive - but of course, there has to be quality control, and more importantly, there's every reason to believe that the manufacture would be more expensive than the applying.
Govt regulation is used as a scapegoat. The market for creating this product is just not desirable, because snake bites are extremely rare compared to just about every other medical malady. There was a reason the original manufacturer willingly gave it up in the face of no competition.
Public health is a public concern, and should be funded with public money. It is cheaper in the long run because of increasing working years/tax dollars, and reducing bankruptcies, and reducing the number of orphans, etc.
Even Mr Invisible Hand, Enlightened Self-Interest himself wrote that the whole edifice of his economic philosophy had to rest on the foundation of respect for human life -- and compassion: http://en.wikipedia.org/wiki/The_Theory_of_Moral_Sentiments
I am not against government or rules. I am against the idea that coercion is the means. Voluntary cooperation, not the use of force, is the means by which we create solutions to all sorts of problems.
Health is no different. It suffers over the long term when people think the use of force to get some short term benefit.
Somehow we live our lives with the understanding that forcing those around to do what we want would destructive, even if it was somehow benevolent. But collectively, we've convinced ourselves that this cannot be the case.
Perhaps it is because the dominant opinion is actually propagated with our own money even if we don't agree and alternative perspectives buried by the mesh of financing and media access of government.
Yes, voluntary compliance with regulations works so well to preserve the Commons - it was clearly in BP's interest to comply with regulations in the Gulf, for instance, and clearly in Goldman-Sachs's interest to preserve the global financial structure. Only idiots would choose short-term savings or profit-taking over long-term global stability, after all; enlightened self-interest will take care of everything!
I like your overall philosophy that coercion is wrong, and in principle I agree with it. I wish that human nature didn't contradict it. Sadly, on every hand I see that actual, real live human beings must be coerced to do good if even the slightest amount of consistency is required.
I'm not talking about voluntary compliance to government regulation.
I'm talking about regulation and government freely agreed to by people when they decide to engage in an activity in an area. And these rules should be decided upon by those whose property is at stake, not by people who just collect tax revenue off in Washington.
The problem is that no system of property has been worked for territorial waters. So no one has any direct financial stake or right to investigate and sure over pollution from rivers. That must wait until the government decides to give it its fully divided and compromised attention.
Human beings only need to be coerced when they fail to live up to their agreements or when they violate the rights of others. But that is not the wrong use of force I seek to stop. Its authorized by your human rights and by the contracts people freely agree to.
Beyond that, coercion is destructive and should be avoided. There is no right that authorizes its use.
no, I implying that if there were owners with a much more direct interest in the future well being of what they own than some distant short-term oriented politician, had set the rules instead of the government, they would have done a BETTER job of regulating what was going.
The government regulates tightly after a disaster and less tightly as memories fade and lobbyists start manipulating them. Politicians will never be as consistently interested in the wellbeing of the gulf or anything else as those with a more direct interest. Which is why the government agree to a ridiculous limit of $75 million on total liability for drilling, something an owner never would have done.
Its the same story over and over, in industry after industry. Government ignores the risks, disaster strikes, they overreact. And then gradually over time the lobbyists erode every restriction, good or bad.
what people need is the freedom to act and create. government, especially when it takes by force from some to give to others for whatever purpose, distorts the decisions people make
and, as its activities destroy capital, government delays innovation. its easy to point to the things governments have achieved. what the people would have achieved had they been freer is not so easily pointed out.
That's a classic example of an area where government can NOT do better than business, because government sucks at innovation.
There are plenty of companies that are not selling insulin, so they would be interested to be able to sell diabetes cure.
Assuming the chances of developing the cure are reasonably good.
Wow, massive strawman. The government sucks at innovation? Who do you think funded and developed ARPANet? You know, the network we're using to communicate right now. Upon which countless businesses have been built.
Nuclear power? Government. First electronic computer? Government.
Furthermore, when it comes to drug discovery, that 'evil government' has one advantage over businesses, because they have no profit motive. Businesses exist to make money. Period.
No business is going to destroy its market for the sake of the common good. If you're in the business of creating drugs, you aren't going to wipe out a disease with a one-time cure, because drugs are expensive to produce, and palliative treatments are way more profitable.
This is exactly an area where governments do better than businesses, because the reward (improving quality of life) means more votes and support for those in office.
To paraphrase: The government allocates dollars obtained via taxation to the development of military technology, which often finds unintended peaceful uses.
The scientists who develop military technology (weaponized nuclear, a nuclear-proof decentralized communication grid, code braking machines, etc.) are simply hired to build it or to weaponize promising areas of reasearch.
Anyone with lots of money and the desire to develop powerful weapons would have developed the innovations you cite. To credit "government" implies that something about the government (other than money and the desire for weapons) is responsible for the success.
Any dictator could do precisely the same thing with sufficient money. Fortunately for those of us in the US, our economic system results in incredible wealth, and the taxes generated by it can buy lots of weapons tech.
Could anyone please point me to government scientific or technology accomplishments in the last 30 years?
Something that noticeably improved our quality of life.
Something on par with achievements by IBM (Business PC), Microsoft (OS, Office, and other software), Google (search), Apple (smartphones, music, ...), Intel (microprocessors), Pfizer (drugs).
It was surprising to see down-voting just on the basis that you disagree with the idea.
Welcome to groupthink.
You might be right that government can not do better than business, but this particular story is an example of where they can.
If there really "are plenty of companies that are not selling insulin, so they would be interested to be able to sell diabetes cure", none of them has come forward. This might be because the chances of developing are not good enough, but it sounds to me like you are starting from an assumption ("private sector would jump on this is if it was a good idea") and working your way backwards ("therefore this cannot have been a good idea").
Personally, my belief is that the best funding approach is multi-polar. In other words, there should be some government funding, some private sector, and some non-profit foundation funding. Each of these funders has blind spots, and is frightened by some research while others embrace it. The combination allows the entrepreneurial scientist to push their research forward at each stage.
Government sucks at innovation? What are you talking about? Pretty much everything that is basic science is paid by government in every nation. It is govt that gave us the internet, the bomb, and the man on the moon. Virtually every nobel prize in history has been given to people who worked for public universities.
What's wrong with the NSF starting that way? Are they not a significant source of funds for "basic science" research?
Even if you want to be cynical about this issue, haven't we been doing this long enough to know that research for military purposes often translates to advances in non-military applications?
EDIT: and don't get me wrong; I would love to see some shift in the way funds are allocated.
My point isn't that central coordination doesn't work, it was just that central coordination is extremely unsophisticated and is typically not a source of added insight, just a source of funds.
In my experience in academe, researchers tailor their work to what the NSF is funding, not what they consider most interesting/important.
1) Please show me "pretty much everything" that government developed in the last 30 years.
http://news.ycombinator.com/item?id=1465878
2) "Man on the moon" is pretty much useless for us.
3) Government didn't give us Internet as we know it now. Not even close.
Government contributed may be ~1% into Internet (if even that).
Considering how much that contribution costs to taxpayers every year -- government performance looks pretty bleak.
1) I have been working as researcher for the past 12 years or so (cancer and neurobiology). Pretty much everything in the field of medical science is founded mainly by public money: this goes for salary and research money. Private contribution is quite minimal and proximal to zero in basic research.
2) Wut? Do you have any idea on the level of technological transfer that space research brings to your everyday life? This goes from materials that keep your home warm to GPS, really.
3) dude, arpanet is a project of DARPA. WWW is a project of CERN. I got money from DARPA and I study fruitflies for god sake.
1) I see now where misunderstanding is coming from.
I'm stating that government is poor at innovating.
You are stating that government is a good source of funding.
These statements do not contradict to each other.
I agree that government funds lots of projects.
It's just that practical results are not impressive at all.
2) Considering the cost of "Man on the Moon" project, the benefits for us are pretty slim.
If I take from you, say, $10K, and then give you back $3K, I can claim that you should be happy, because I'm helping you by giving $3K. Right?
3) CERN is NOT a government.
Disagree. Individuals (scientists, doctors, lab technicians, inventors) can do the innovating, can do the research. They just need to be paid and given space and tools and time to do it in. Enter government. Government does not need to innovate, just write checks. The problem with the alternative, like a large private corporation, can be that it may not be in their best interests profit wise to pursue a certain line of development. Could reduce their profits. Or at least they can be afraid it might. And they have a fiduciary responsibility to their shareholders. Not necessarily a sense of ethical obligation to their fellow man.
Individuals (scientists, doctors, lab technicians, inventors) can do the innovating, can do the research. They just need to be paid and given space and tools and time to do it in. Enter government. Government does not need to innovate, just write checks.
In principal, you are correct, but you are neglecting one very important point: the government is not a nebulous entity with an endless supply of money. Therefore, the individuals that comprise the government must identify (either directly, or by selecting individuals who are most qualified in a given area of expertise to serve as proxies) the scientists whose ideas, proposals, past productivity, and requests for facilities most warrant funding.
Separating the wheat from the chaff is a non-trivial exercise. It may not be be direct innovation, but I would argue that it is every bit as challenging.
To state the obvious: there's more money in keeping people ill and in need of temporary amelioration than there is in curing them, and such is the foundation of american pharmaceutical industry.
Cheap/expensive is relative. More importantly, insulin is only a tiny cost of the care of Type 1 diabetes. Diabetics need to check blood sugar levels anywhere from 3-5 times a day, sometimes more if ill or for other circumstances. Test strips can cost a patient as much as $1 per strip.
Also, insulin requires a subcutaneous injection for delivery. That means a new syringe 3-4 times per day depending on the therapy. Or, you could get an insulin pump at about $5k and pay for insets, tubing, reservoirs and other miscellaneous supplies. Those need to be swapped out every three days.
Want to add continuous glucose monitoring to your therapy? Even more supplies. Add it all up and treating T1 diabetes is nothing close to cheap no matter how deep your pockets are.
The articles describe diabetes patients as floating "shipwrecks": a rudder broken here, a sail there, no one at the helm. It's a good analogy because, when you have diabetes, almost anything can fail without warning.
There's a whole sub-industry based on diabetes! You have goods providers shuttling out boatloads of sharps, insulin testers, strips, etc. A lot of companies profit beyond just insulin, which isn't terribly expensive unless you have to use a high dosage.
The Juvenile Diabetes Research Foundation http://www.jdrf.org/ funded $100 million dollars of research last year alone into research for juvenile diabetes (type I). Link: http://www.jdrf.org/index.cfm?fuseaction=home.viewPage&p... Funding is predominantly from individuals and families searching for a cure for diabetes. That includes people like myself and my family. We could care less what mechanism or what business model cures diabetes.
Of that research, there is significant research into stem cell therapies and cures Link: http://onlineapps.jdfcure.org/AbstractSearchEngine.cfm Select "stem cell therapy" from the drop down.
Lastly, the head of JDRF is a tech star. http://www.jdrf.org/index.cfm?page_id=113971 He founded Citysearch and Overture (the originator of keyword marketing. Bought by Yahoo).
I'm a big JDRF supporter since my sister has Type 1 diabetes. For any of you that are passionate about curing Type 1 diabetes, look into JDRF. Link: http://www.jdrf.org/