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/
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.
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.
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...
Then again, I'm largely ignorant on this subject so I'm certainly not making any accusations in this case.
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.
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.
That's all you really need to know about any story about big, evil companies supposedly suppressing new technology.
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.
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.
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!)
So, to the contrary, I think he's done many things over the past 10 years to make human trials possible!
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.
She has also cured Type I in mice, although using other means.
And she also got her share of first-class controversy. Cf. http://www.diabeteshealth.com/read/2005/05/01/4126/why-did-t... and the preceding New York Times article "I BEG TO DIFFER; A Diabetes Researcher Forges Her Own Path to a Cure" http://bit.ly/bzUkWs . The JDRF doens't look good in this case at all.
More information about her approach at http://www.faustmanlab.org/
A good overview of other immune-based therapeutic approaches from 2006 can be found at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1868847/
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.
The stringing along of desperate people is WHY the FDA exists.
"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 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).
http://en.wikipedia.org/wiki/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.
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.
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.
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.
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.
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.
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.
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.
EDIT: Let's not forget public health reform can save more lives than just about anything else (thank you Oliver Wendel Holmes/Ignaz Semmelweis http://www.accessexcellence.org/AE/AEC/CC/hand_background.ph..., Sara Josephine Baker, http://en.wikipedia.org/wiki/Sara_Josephine_Baker and their present day equivalent, Atul Gawande).
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.
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.
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.