Well of course everyone wishes well to anyone pursuing a promising avenue of research in treating cancer, but what I see here is an online news site with a tiny reporting staff[1] recycling what is plainly a press release with an included video as part of the press release. A press release is how people go about raising crowdfunding, of course, but the role of press releases in the science news cycle[2] is more to hype a speculative idea that may not work than to report on what is known for sure.
The researcher who is profiled (through his own press release) in the article kindly submitted here appears to have written in 2010 a caution about speculative research. "Ultimately, every cross-disciplinary research niche must achieve a level of maturity. We would characterize maturity as having two defining aspects: First, a respectable level of reproducibility is required, and clear operating procedures using methods accepted by the research community. Secondly, enough repeated experiments have been conducted that broader meta-analyses can be conducted to glean additional or unexpected information about the system. These two aspects, combined, suggest ability and need to begin a process of standardization so that comparisons may be made to assess quality of research, and to bolster the strength of peer review. Ultimately, standardization opens up the avenue for practical engineering."[3] That sounds about right. If we can find replicable results with this approach, then we have something to talk about.
Hi! I'm running the crowdfunding and I'm the first person to say that there are a ton of ways that this might not work. It's still early-stage preclinicals (although the results obtained so far are in range of common drugs like taxol). Arguably more risky is the idea of trying to develop a drug without patents.
I guess personally I would consider this to be less of a 'science news cycle' than a 'desperate plea for funding', considering that there are no new results reported in the article.
A pleasure to make your acquaintance. I gather from the Hacker News profile you have that you are indeed the same person as the person profiled in the article kindly submitted here. (You would have replied just before I posted a second paragraph to my comment, quoting an earlier paper that I think must be your co-authored paper.) How did the earlier phases of research go?
Ah, yes, the Juggernauts of Biology. That was a fun article to write. Indeed, the professor we're critiquing (and also praising) was on my committee, and I had a copy of an early draft of the Juggernauts paper literally in my back pocket during my thesis defense [0].
That research is somewhat unrelated to what I'm doing - the more relevant paper is this (happily open access thanks to the NIH) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3376188/: The molecule demonstrates great results - single digit nanomolar IC50s (somewhere between taxol and paclitaxel-level strength). And also mitigated cardiotoxicity, which was the major concern preventing continuation of preclinical experiments in the parent compound.
Briefly back to the topic of (the typical scientific) press releases, they have always been a strange animal, authored by nonscientist PR agents hired by the institution, bragging about some achievement, without directly asking for funds - in the case of universities possibly indirectly suggesting to alumni that their donations are going for good and in the case of institutions like NASA, reassuring the public that their taxpayer dollars are well-spent.
Please update your profile's link to Project Marilyn. I almost skipped away and forgot about the whole thing when I saw that you weren't accepting donations. However, you are accepting donations, just at a different page.
Also, I donated some BTC and then felt like increasing it but browsers I use are now reporting coinbase in a redirect loop. You're losing money here, man.
oh wow, THANK you. I had made that page invisible, and was wondering how people were being redirected to a page where they could be put on the mailing list... Gah.
That's like saying it takes 7 billion to make a company that competes with facebook, and you'll never get 7 billion series A funding. Trivially true, but to compete with facebook is a process, and not all stages of a process use the same funding mechanisms.
I don't know. It's certainly a risk, but there's only one way to find out. I think there are companies willing to do it (cipla is one that I'm thinking about approaching).
I'd like to see more of a potential plan here - otherwise I'm afraid that making a drug un-patentable would make it /less/ likely that it goes to market.
I believe I've seen evidence of exactly that happening as margins for a drug are very low if it can't be protected (via IP), and the cost to bring a drug to market is so high.
I see many problems with current IP system - but I don't see how this is avoidable in a completely commoditizable generic drug market.
If I'm making some incorrect assumptions here, I'd love to know!
generics manufacturers make ~ 6% margin, which is basically "what most businesses make". "Drug manufacturers - Major" make 20% margin. Keep in mind also that big pharma spends about as much on advertising as they do on R&D.
I'm with this guy, if I have terminal cancer. I'll try a remedy made from dirt if it has a chance. I mean what's to lose, at that point my body becomes a free testing lab.
> Oh yes. I forgot scientists produce life saving medicine from their dorm rooms all the time. How could I forget.
That's more common than most people realize (meaning something being discovered through work in an unrelated context). Look at the discovery of Penicillin as one example, there are many others.
"Remember that thing that happened in 1928" is hardly a compelling case. That's like saying you can build a major telecom company without computers because Bell did it.
> "Remember that thing that happened in 1928" is hardly a compelling case.
And that wasn't what I said -- Penicillin is just one example. Look at the polymerase chain reaction, thought up during a late-night drive by a graduate student and now ubiquitous in biology and medicine. Look at the first polio vaccine, created at very low cost by someone who was so sure of his results, and so short of funds, that he used his own children as test subjects.
Worse, I fear that cancer patients and their loved ones will get overly enthusiastic about this. Then, when they donate tons of money and it fails, they are out money, time, and a drug. This is the reason pharmaceutical companies are cautious about contacting patient advocacy groups.
Good point. This is something i wrestled with. It's very likely this will fail (for both social and scientific reasons). At the very least though if it fails for scientific reasons, since experiments will be openly disclosed (unlike the siloed process at pharma r&d) - we will learn something - even if that something is "don't try making this drug again".
If I am donating to a charity which funnels money to research, how is this all that different? I think you can tap into a similar set of population and motivations for the donations.
One of the upsides with this sort of approach is that you have a great opportunity to involve the donors in the overall process. The experiment can be used to provide a view into the nitty gritty of the scientific process and more specifically drug research. Of course to do this well will take a significant effort to communicate everything effectively.
On the other hand, as you mentioned, you don't want to create false hope. To mitigate this you would want to work on managing expectations on the potential results and consequences of those results are.
Either way you should be able to gather useful information/experience on both the scientific experiment and the social experiment.
I would like to think that the existing funding of research has mechanisms in place to fund the "best" types of research, which makes me ask why the need for crowd funding? It sounds cool initially but having seen some nonsense that was crowd funded I am not so sure.
I will freely admit I know very little about the pharmaceutical world, but my (perhaps dumb) question is what scope is there to disrupt these typical costs.
For example it used to be that space programs cost billions, yet India has just put a Mars orbital in place for $74m.
I am old enough to remember when it was the received wisdom that people believed an e-commerce website would cost $1m, yet many startups launch their first site with less then 0.1% of that.
How much of that $1bn-$2bn typical cost is open to similar levels of disruption?
You can make way cheaper drugs than $1-2 billion (fidaxomicin was developed by Optimer for 200some million) by being very, very picky about your targets, and not failing.
But it's not a trivial thing to disrupt, and there are some costs that are just out and out fixed (clinical trials are spendy).
If you can always be right about every drug, every time, at every stage, then perhaps quite a bit. Of course, multiple years of trials is still going to be very expensive.
A lot of the costs seem to be linked to the fact that failures are common at every stage. Which is why there is a lot of time, money, and energy being put into reducing failure rates.
There's not an easy "insert disruption here" point.
Because negativity is a bane on scientific progress.
People who claim something can't be done are foolish. Claiming a negative - claiming something you can't prove - is anti-intellectual at best, downright ignorant at worst.
There is no need to claim something can't be done. It serves absolutely no purpose. The only possible outcome that negativity can have is to stop someone from trying, when really - thats the heart of scientific discovery. We can't fly, we can't break the sound barrier, we can't we can't we can't.
History is full of people who claim we can't. But history forgets those people, and remembers the ones who actually did.
You don't need to crowdfund any more than it costs to convince a group with $1bn that they can make money on this by spending that to commercialize your demonstration. That is often just a few million, or even less, depending on how compelling your data and how good your connections.
Most of that $1bn and decade of time is make-work created by ever more risk-averse regulators. The actual process of creating something, making a product, and gathering reasonable data on safety is a fraction of that.
Why would a company invest a $1bn on a drug they can't patent ?
Also drug companies can't just decide they don't want to get FDA approval because it's too much work. They have to work within existing regulations whether they like them or not.
That's what I don't get. Sure you could crowdfund a few preclinical experiments. But where do you get the ~$100M to get it approved? It would be awesome if someone said "here's $100M, don't worry about paying me back", but I wouldn't count on it.
still needs to be approved by the FDA, as the rest of the world is using this for guidance.
majority of drug development is not the actual science work, but tons of paperwork and audit trails. as history has proven if you play fast and loose here a lot of people will be hurt or killed.
you need to document every step along the way. and once clinical trials start, the scrutiny increases, a lot.
there is a now a fast track for very promising breakthrough drugs, but getting this designation is very hard and relies on proven, documented science.
Short answer is. I'm not a faculty in a university since I tried and choose not to try any longer. I'm not in pharma because of patents. So getting a public grant is hard. It's even harder because my old boss is now in charge of the relevant funding stream and she shouldn't be working with grants that further her former avenue of research.
> It's even harder because my old boss is now in charge of the relevant funding stream and she shouldn't be working with grants that further her former avenue of research.
That's one very depressing thought. I understand her reasons, but I see the existence of them as a failure in getting all of us to a rational society.
All the best. I'll contribute, what I can.
We already have crowd funding for science. We do it as a whole society when we fund the various grant-giving agencies in this country. I cannot emphasize how bad of an idea it is to take funding decisions away from professional scientists and place them in the hands of untrained individuals, no matter how enthusiastic they may be nor how much money they are willing to throw away.
This displays a profound ignorance of the real situation, which is that the majority of useful early stage research is funded by philanthropy. Not by government, not by companies, but by people making donations. It doesn't come from the existing funding institutions because they almost never fund anything that hasn't already had its prototype and early stage research completed successfully. If you don't have your proof of concept you are not getting funded, and the institutions don't really care about where the starting point of the pipeline actually comes from. Every lab scrapes out funding from the corners of existing grants and petitions patrons to conduct what is arguably their most important work, which is to say the actual work of taking risks and creating new things.
What most people call research grants are nothing of the sort. They are development grants. The research already happened, and it was paid for by bootstrapped philanthropy.
These philanthropic organizations almost always have either (a) committees made up of scientists that decide where the money should be allocated (e.g. HHMI) or (b) donate to institutions which then dole out money internally as project grants that are vetted by other scientists.
Philanthropic organizations don't generally just hand out money to the person who makes the flashiest video.
The question boils down to a real-world application of which is a bigger fallacy, the appeal to authority or the appeal to majority. Well, I don't think there is a good answer to that. But let's get serious here. I'm asking for 50k to do one experiment. Microsoft just paid one billion for minecraft.
Microsoft paid 2.5 billion for Minecraft. Please don't let the negativity here lessen your motivation. The negativity says more about the persons being negative then about you or your research. I believe crowdfunded drug development is a good way to evolve our society and will ask my friends to consider donating.
It's possible to fund early state research using money from foundations, etc. But that wasn't the assertion given by the parent post - it was that the majority of early stage research is both non-corporate and non-government funded.
"Early stage research" is such a wacky term you haven't a hope of getting that nailed down.
If you sit down like a serious person and look at a well-defined question, like "where do drugs that end up being administered to patients start their existence?", you get
Here is a quote that my experience in science has caused me to resonate with.
"I think there's been a Gresham's Law in science funding in this country, as the political people who are nimble in the art of writing government grants have gradually displaced the eccentric and idiosyncratic people who typically make the best scientists. The eccentric university professor is a species that is going extinct fast." - Peter Thiel [0]
There are many problems with the institutions in this country that give grants. However, crowdsourcing is not the answer. Nor is baiting people by offering them the promise of a "patent free" cancer drug. Full-term drug development, including clinical trials reaches into the billions of dollars. You're never going to crowdsource that. So even if your drug is wildly successful and nontoxic (of which the chances are tiny given that you have not yet done animal studies), you will to partner with a pharma comnpany to bankroll the rest of its development.
how is that a bait? I'm pretty damn serious about that. Anyone who knows me knows that I have been a very fervent anti-patent person for years now. It's caused problems in places that I have worked.
I think it's correct to say that I am not going to crowdfund the entire drug development. Accordingly, that is not the plan. My vision is that the first stage (well second, really) is crowdfunded to show that there is broad interest in the idea in society, to raise some amount of funding outside of institutional granters, and achieve a productive result showing that indysci (and I) are not totally incompetent buffoons.
The completion of preclinicals (which typically ranges in the single-to-double-digit millions) would probably best come from institutional nonprofit granters, and running clinicals should come from the for-profit (probably generic) pharma that is seeking to capitalize on it. But I'm open-minded to other ideas.
The "bait" is the claim that a patent-less drug will be cheaper when it finally comes into use in the clinic than a patented drug (from your indysci campaign: "Releasing without a patent means the drugs will be cheaper and it will be easier to build on the work to make improved drugs or drug combinations. Releasing without a patent means expanded access to drugs in countries that can't afford extensive licensing and export agreements.")
But you and I both know that is not how drug development works. When you bring in a pharmaceutical company to fund the clinical trials (which are hugely risky) they will demand an upside. The upside will come if they (a) make a derivative molecule that they can patent (b) patent a use of the drug for an indication (c) package the molecule in a way that is patentable -- e.g. with an adjuvant.
The crowdsourcing page on Indysci reads as if the drug will eventually be cheap and readily accessible just because you have not applied for patent protection.
Another point: the indysci page misleads people about what drug patents means by comparing it to open-source software. As an academic researcher, you can work on ANY molecule, no matter its patent status, in an academic research setting. That means you can develop new uses for the molecule, make derivatives, etc. What you really mean is that patented drugs cannot be SOLD by anyone other than the manufacturer.
Typically industrial compound leads are developed in closed, siloed situations, because if you disclose you jeopardize your patent status. Of course, "open sourcing" doesn't guaranteed development in non-siloed environments either (you could just fail to 'git push' on a mistake branch), but it does somewhat eliminate the incentives to do so. Perhaps the wording ("it will be easier to build on the work to make improved drugs or drug combinations") on my attempt to analogize that is bad for being unspecific. Do you have a suggestion on how I might change that on the page to better reflect this concept?
The idea that somehow the eccentric and idiosyncratic will be better than people who are good at 'playing the game' at raising funds by drawing the attention of wealthy patrons or large groups is...an interesting assumption.
I think eccentric and idiosyncratic people are on average likely to be even worse at making crowdfunding videos and social media management than they are at writing grant applications. Mountebanks, on the other hand are usually brilliant at fundraising from the common man.
Exactly what I thought when seeing the video. I don't want scientific funding to go to those who manage to produce the best quality 3 minute promotional video.
You have no idea how hard making this video was for me. Also I got lucky because a friend had connections to a cameraman who worked for top chef. Also we tried before, and failed spectacularly (and we may yet fail... The campaign is still a smidge below where it needs to be to tilt and that doesnt take into account interest decay.).
If my scientific bona fides are in question, you should check out my publication record. It's not in spectacular journals (which as a scientist would probably be as suspicious to me as a flashy video is to you), but, I've done spectroscopy on a metastable peptide, isolated and characterized an anticancer compound, and improved an enzyme fourfold with hand picked site directed mutagenesis. I'm no Linus Pauling, it's true, but I feel fairly accomplished.
I don't want scientific funding to go to most professors. Seriously, have you actually met those guys?
Currently not all state sponsored research guarantees shared results, but the NIH does (after one year). But: Not all results are guaranteed to be public, just the published work. If you really wanted to know, for state-sponsored research in the US, you could probably FOIA results, all the way down to the notebooks.
The NIH mandates that all research it funds be placed in the public domain within 1 year of publication. http://publicaccess.nih.gov/
This does not go far enough, but it is a good start. It would be better if non-published research were also placed in the public domain, but this is logistically tricky for many reasons.
I think the negative comments on here have got it upside down. I research and treat cancer, and I think this is great. The fact that it costs billions to develop a drug is why we should support novel pathways of organising drug development, rather than disparaging it.
It may not really be obvious from the outside, but there is a coming crisis in that we won't as a society be able to afford new cancer drugs. It is regularly reported that new drugs which are typically priced around US$120k per year (for multiple years in some cases) are not cost effective. Case in point: crizotonib. This is a drug that works very well at shrinking tumours and controlling disease in incurable lung cancer. It is targeted - it only works if your tumour has a particular gene fusion, which occurs in about 4% of lung cancer patients. It is well tolerated compared to chemotherapy. It's the kind of personalised medicine we are hoping to achieve more broadly in the future. And the way it is priced isn't cost effective [1].
I can guarantee you that the coming surge in immunotherapies will be exorbitantly priced. And these are drugs we will be giving not to 4% of cancer patients, but > 50% of advanced cancer patients in a given tumour type.
These problems are even worse in countries where the government pays for drugs, because they are far more restricted in what they can afford. Patients just end up missing out. And if you think having cancer is bad enough, knowing there is a drug that might help and not being able to afford it is just heart breaking.
So good luck to them, I hope they can draw some money away from nonsense like crowd funding potato salad.
What I don't understand is why drugs developed with public money (government grants and non-profit charities) aren't automatically in the public domain.
From what I understand, public money does not go to individual drug research, but goes towards more basic and foundational research. Drugs are built on top of the foundational knowledge, but the patents for those drugs do not then cover the foundational knowledge.
For example, if public research discovers what triggers cancer cells to multiply, drug companies will scramble to make drugs to prevent it. But the drug company cannot just patent the knowledge about the trigger. If a second drug company finds a second way to prevent the trigger, they can make it, no problem.
Maybe I'm just not aware of direct public funding to drug companies.
Because the profits from those drugs can be used to fund new drug therapies as well. Same reason as private companies. I'd prefer the drugs are made available to anyone who needs them at a reasonable rate (maybe a sliding scale based on income?) then making those discoveries public domain.
You need public money to help innovation but you still need individual's greed to make it happen. Would you spend your entire lifetime building something and you get nothing in return other than pat on your back ?
Consider people who have spent their life around people who are dying from X. They might be highly motivated to come up with a solution where the result is its own reward - the elimination of X.
Many years ago, I worked in a lab where I synthesized a variant of Interferon using solid phase peptide synthesis. It was all manual work, using pretty basic materials. It's just a peptide after all.
I finished at 11 PM. Cleaned it up, walked across the street to probably one of the world's most respected Cancer Hospitals. Gave it to the MD on staff, he said we'll try it now. Right now.
A lot of things go on when people are at life and death cross roads. Lots of things out of the mainstream. When all hope is gone, sometimes miracles can happen.
To everyone sure this will fail because of the amount of money required, ask yourself this: if you told your mom, and your neighbor, and your mailman, and your boss about the Occulus Rift, or Pebble, or The Peachy Printer, or Zach Braff's latest movie, and the opportunity to help make those products a reality by preordering them/donating money to them, do you really think any sizable portion of those people would be interested enough to donate? Of course not.
Most successful Kickstarter and IndieGoGo campaigns have an extremely narrow market, the early adopters of technology. Cancer casts a wider net by several orders of magnitude. There's no reason to think that, with a good viral marketing campaign, something like this couldn't raise several orders of magnitude more money than the most successful crowdfunding campaigns so far.
It's the Galileo Gambit: they laughed at him, they laugh at me, therefore I'll be proven later to be right!
Or,
"The fact that some geniuses were laughed at does not imply that all who are laughed at are geniuses. They laughed at Columbus, they laughed at Fulton, they laughed at the Wright brothers. But they also laughed at Bozo the Clown." -- Sagan
I would say, contrast focuses only on the difference between the entities being contrasted, while compare can mean, you also focus on the similarities. Not sure, how you use the words, though.
It was a sarcastic remark. My original comment's gist was that all of the naysayers, at least with respect to the amount of funding required, are basing their analysis on a faulty assumption. So far, we've seen a very narrow niche of people, with very specific interests, fund successful kickstarters on the order of $1,000,000 to $10,000,000. In _contrast_, the demographic of people that would likely be interested in funding cancer research is potentially 1,000 to 10,000 times larger than the 18-35 year old, white American male STEM worker with disposable income and a poor understanding of the realities of electronics manufacturing demographic.
My Bad. Though, the original comment "compare cancer with Pebble" didn't deserve a reply. Just trolling, you're comparing funding campaign building both, not the experiences of both.
Talk about burying a lead; Yonemoto is demonstrating that the open source model can be applied to other areas of knowledge and industry. They're merely using Cancer as a focal point.
I look forward to a future where one project to cure an ailment is forked, because the project leaders were impeding progress.
The researcher who is profiled (through his own press release) in the article kindly submitted here appears to have written in 2010 a caution about speculative research. "Ultimately, every cross-disciplinary research niche must achieve a level of maturity. We would characterize maturity as having two defining aspects: First, a respectable level of reproducibility is required, and clear operating procedures using methods accepted by the research community. Secondly, enough repeated experiments have been conducted that broader meta-analyses can be conducted to glean additional or unexpected information about the system. These two aspects, combined, suggest ability and need to begin a process of standardization so that comparisons may be made to assess quality of research, and to bolster the strength of peer review. Ultimately, standardization opens up the avenue for practical engineering."[3] That sounds about right. If we can find replicable results with this approach, then we have something to talk about.
[1] http://timesofsandiego.com/staff/
http://timesofsandiego.com/about/
[2] http://www.phdcomics.com/comics/archive.php?comicid=1174
[3] Yonemoto, I. T. and Tippmann, E. M. (2010), The juggernauts of biology. Bioessays, 32: 314–321. doi: 10.1002/bies.200900142
http://onlinelibrary.wiley.com/doi/10.1002/bies.200900142/ab...