liv: ribbon diagram of a p53 monomer (p53)
[personal profile] liv
Seems to be yet another variation of this synthetic outrage being forwarded all over the internet. Sometimes it's zombie stories from years ago being recirculated, because people have seen the story but not the debunking. Sometimes it's a very slight variation on the theme: the amazing discovery that's being suppressed seems to have mutated from a cheap wonder drug to a cancer-killing virus recently. But otherwise the elements of the OMG this is so terrible!!!! screed are suspiciously similar. And it's just as much bullshit as every other iteration of this.

I'm sticking my neck out and saying this, even though I only seen the rumours and outraged Twitter and FB posts, I haven't traced the detail of the story back to its source and verified how little is factual. There's a pattern to these stories, and it's based on several misconceptions about how the world actually works.

They've discovered the cure for cancer

No, they've discovered something that gives statistically significant results in a lab test. In most cases this means something that kills cancer cell lines, if you're really lucky it means that it shrinks artificially created pseudo-tumours in inbred rats and mice. There are literally hundreds of such treatments discovered every year – I've discovered a couple in my time – and most of them are never developed into actual drugs that can be taken by real people with cancer.

Sometimes they kill the particular cultured cell line that some researchers happened to work with, but not really anything else. Sometimes they're reasonably effective at killing lab-grown cells, but not actual tumours. Sometimes they work reasonably ok in the kind of artificial tumours we use experimentally to test potential new drugs with relatively less suffering caused to the experimental animals than if we actually gave them cancer, but not in more realistic, but more ethically problematic animal models. Sometimes they work pretty well in lab rats but not in any other organism. Very often they kill cancer cells, but also have devastating or even lethal side-effects on healthy tissue. Sometimes they are reasonably effective and reasonably safe, but not enough better than existing treatments to justify the effort of developing them to a point where they would actually be usable.

So a very tiny proportion of potential treatments that look promising in initial tests actually go forward into clinical trials. This isn't because of an evil conspiracy, this is because scientists are doing their job properly and making a concerted effort to falsify an initially promising hypothesis. And doctors are doing their job properly and not giving sick, dying, highly vulnerable patients new drugs just because they're new, if they haven't yet been properly tested and there isn't a reasonable chance the new discovery will help.

And of the drugs that go into clinical trials, the overwhelming majority are also rejected. Most typically because they're just not safe enough to use. And note that the bar for "safe enough" is pretty low, given that most traditional cancer treatments are extremely toxic, such as deliberately inducing severe radiation burns or applying repeated high doses of really nasty poisons and carcinogens directly into a patient's bloodstream. Plus if someone is dying of so far incurable cancer, a pretty high level of risk may well be better than the alternative. But that doesn't make it ethical to give terminally ill people a treatment which causes more harm than the disease.

Some drugs are rejected because in spite of the extensive pre-clinical work, they turn out not to work after all in real patients. Some are just too unpredictable, they may miraculously cure a small number of patients but cause terrible suffering to others and despite intensive searching nobody can find what determines which will happen. This is particularly hard to accept, because if you happen to be aware of one of the lucky miraculously cured people, it can seem gratuitously evil on the part of doctors to withhold the new drug from you or your loved one. Again, some are rejected because they sort of work, but not any better than current drugs, and something people have been working with for decades is a better bet than a new option which may turn out to have rare problems.

But it can't be patented

This is pretty unlikely if you know anything about how the patent system actually works, rather than the caricature of it that floats around on the internet. It's a bit of a geek article of faith that all of intellectual property law is really only there to interfere with our freedom to acquire free entertainment, and a bit of a leftie article of faith that all of intellectual property law is really only there to help big corporations oppress poor people. I don't deny that sometimes IP law gets used for evil purposes, but it's also the case that many otherwise sensible people are far too ready to believe that patent = evil and are very uncritical about any claim that supports that view.

Thing is, if there's a cheap, easy to make chemical which is out of patent or not patentable, it's still possible to obtain a patent for a novel use of it, such as treating cancer. If some academic research gets published and later turns out that the approach proposed in the published research is worth developing as a real drug or medical tech, that doesn't mean that it's "too late" to patent anything. The process of going from a lab experiment to a generally available drug is extremely complicated and difficult and almost certainly involves multiple innovations. Formulating the drug in a way that is convenient or at least plausible to administer, that reliably gets the right dose into the circulation, and ensures that the half-life of the drug is long enough to have the desired effect but that it doesn't hang around in the body forever, and avoiding weird interactions between the active ingredient and the "carrier" components of the formulation, all of these are problems which have to be solved. Then you get scaling up to be able to make enough of the drug to distribute it to all the patients who need it, which is a manufacturing problem. Solving these problems is likely to involve innovations which are potentially patentable. Hey, sometimes it's even possible to patent a particular detailed treatment protocol or a method of training doctors to be able to successfully apply your new treatment.

Besides which, in recent years I've repeatedly heard from high-up people working for drug companies that these days their business model is to reduce their reliance on big patents. The patent system gives essentially a seven-year time-limited monopoly, but given the complexity of modern medicine, and cancer treatment is for various reasons an extreme case, it can often take most of that protected time (10 to 15 years is not atypical, from what I've heard) to actually develop a drug to the point where it's clinically useful and change the working practices of medical teams so that the new treatment is routinely preferred over the old one. So what I'm picking up is that ruthless, cold-hearted capitalist companies that care more about the shareholders' bottom line than about curing sick people are starting to seek other ways to make profits. (Sure, the people who are saying this could be lying to us naive academic researchers; if you automatically believe that anyone employed by "Big Pharma" is part of the conspiracy, then you are not going to find this line of argument convincing.)

If a treatment truly is unpatentable, well then, companies are going to try making money by making a better or at least more popular generic version than their rivals. They're going to do the absolutely standard capitalist thing of shifting more by selling it at a cheaper price. Or use their advantages in already having the infrastructure in place to be able to make more of it faster than their rivals. Or they're going to sell to the developing world / global south where the sheer size of the potential market can sometimes outweigh the relatively lower amount of money available for medicine (and the relative difficulties of enforcing patents). If the treatment is difficult to manufacture and distribute, it can still demand a high market price even without the legal monopoly provided by the patent system. There's an effective technical monopoly for companies that have the resources to produce the drug in big enough quantities and with good enough quality control to be used. And if it genuinely is easy and cheap to make, you can bet that small entrepreneurs would be all over it if for some inexplicable reason the big companies decided not to take the opportunity to make easy money.

Note I'm not claiming that pharmaceutical companies are actually benevolent and altruistic! Just that even with the assumption that they care vastly more about profit than ethics, it makes no sense at all to "suppress" a genuinely effective new treatment for cancer because it can't be patented.

So it's being suppressed!

Well, it's possible. I am constitutionally disinclined to believe conspiracy theories, but maybe one day I'm going to get egg on my face when I learn that some shadowy cabal of evil capitalists really is cackling and rubbing their hands together over how much more profitable it is to let people die of cancer than cure them. But ask yourself this: if there really is a worldwide conspiracy, do you honestly think some guy on Facebook or semi-literate blogger has Uncovered The Truth?

The thing is, there isn't any central deciding board out there choosing which initially promising experiments should be taken forward through the entire long, expensive and highly complex process of actually developing a new treatment which gets used for real patients. There are lots of different people making lots of individual decisions at all kinds of levels, the scientists themselves, the businesses or non-profit research institutions that employ them, the people who decide how to allocate the funding (government bodies, charities, venture capitalists, boards of directors etc), and so on. Even among the drugs that do get commercialized, there are still decisions as to which ones are offered to patients: doctors have to evaluate the evidence and decide whether to switch to a new treatment, hospitals have to decide whether buying a new drug is cost-effective, and national-level politics plays a role as well.

Some of those decisions are going to lead to the wrong outcome, whether by bad luck or malice / putting profit ahead of human suffering. So I'm sure it does happen that sometimes more effort goes into developing an objectively less good treatment than one that would have turned out to be better if only it had been developed. But that's rarely because of any one direct comparison between two potential treatments, and even when it is, the question of which of these options will make more money through patents is very unlikely to be the sole consideration. Not that that itself is a particularly straightforward thing to assess anyway; crudely there's a reasonable correlation between successful, effective treatments and how much money can be made from them. In fact, a more likely reason why why a potentially wonderful cancer treatment is likely to be abandoned (not suppressed) is because it is only good for a very rare kind of cancer. So grandiose claims about how this amazing wonder drug or magical virus is effective against every known kind of cancer should give even more reason to be suspicious of the story that They are suppressing its production.

The other big reason to be extremely skeptical about these kinds of scare stories is that very often they originate from quacks who are peddling some kind of miracle cure. They want desperate cancer patients to believe that the whole medical, scientific, political and commercial establishment is conspiring against them, so that they'll be good little marks for whatever someone's selling. That could be magic, it could be something that is completely untested and unvalidated, it could be a genuine drug (perhaps even the very one that's supposedly being suppressed by evil corporations) being manufactured without the appropriate quality control and safety checks.

This is pretty much a potted version of a rant I subjected [personal profile] jack to when he innocently asked me about the cancer-killing virus story. So I thought I should put it on the internet for posterity! I should note that I know quite a lot about cancer research, as it's been my profession for ten years, but my knowledge of IP law comes from the fact that my childhood was pretty much as portrayed in this Calvin and Hobbes strip.

For a more detailed takedown of the story, with actual citations rather than just ranting, see this excellent piece by David Gorski on DCA. As far as I can tell the DCA story from 2007 is the memetic ancestor to all the related scandals that keep doing the rounds, though even DCA itself hasn't died out, it shows up on social networks every so often.

(no subject)

Date: 2012-09-13 12:41 pm (UTC)
jack: (Default)
From: [personal profile] jack
*hugs*

FWIW, the particular story that was doing the rounds last week was http://www.telegraph.co.uk/health/healthnews/9508895/A-virus-that-kills-cancer-the-cure-thats-waiting-in-the-coldc.html
Edited Date: 2012-09-13 12:44 pm (UTC)

(no subject)

Date: 2012-09-13 01:04 pm (UTC)
jack: (Default)
From: [personal profile] jack
I am constitutionally disinclined to believe conspiracy theories, but maybe one day I'm going to get egg on my face

FWIW, my rule of thumb is that a traditional conspiracy theory involves a large number of people secretly coordinating to orchestrate something complicated without any evidence getting out. This is almost always false[1] because it's impossible for that many people not to let something slip.

Indeed, the most stereotypical conspiracies are a sort of logical conclusion of the cognitive flaw of thinking that reasons must be disproportionate to results: I'm ill, therefore someone must be MAKING me ill, it can't just be coincidence.

However, at the other extreme are lots of conspiracies that really do exist. Eg. if one political party is in charge of arranging elections, it's very very easy for members to prioritise voting areas with people supporting that party and deprioritise others, etc, without any central organisation, just from each person being a bit biased, and no-one standing up and saying "no, lets make a special effort to be fair!", and then that gets entrenched as the way it is, without anyone orchestrating it, but with everyone able to say "I dunno. I didn't do anything".

So I think the difference is not our experience of conspiracy theories, where we're equally sceptical, but your experience that any purported unfunded miracle cure IS going to be a conspiracy theory, whether or not that's obvious to a non-biologist :)

[1] Any counterexamples?

(no subject)

Date: 2012-09-13 01:45 pm (UTC)
lethargic_man: (reflect)
From: [personal profile] lethargic_man
[1] Any counterexamples?

Depends whether there's a war on. Things like the existence of Bletchley Park were really kept top secret for decades during and after the war. But whether you could call that a conspiracy I don't know.

(no subject)

Date: 2012-09-13 02:20 pm (UTC)
jack: (Default)
From: [personal profile] jack
Good point. Yes, I think that basically counts. The conspiracy wasn't as widespread as some fictional conspiracy theories, but comparatively many people all knew, and all kept quiet.

(no subject)

Date: 2012-09-13 02:27 pm (UTC)
redbird: closeup of me drinking tea, in a friend's kitchen (Default)
From: [personal profile] redbird
Right. That's partly the difference between a group of people working together for selfish ends—which has some of the aspects of conspiracy— and a concealed organization, which is what most of us think of when we think "conspiracy." A fair amount of racism, sexism, and other biases is systematic and entrenched in ways that don't require (ongoing) conspiracy. But there are also cases of people working together, openly, to maintain them: for example, the details of contributions may be hidden, but it's no secret that the Catholic and Mormon churches have been working against same-sex marriage.

(no subject)

Date: 2012-09-13 02:38 pm (UTC)
jack: (Default)
From: [personal profile] jack
by definition I wouldn't know about it?

But we haven't seen anything similar to that, or things like that in the past which were revealed later, or any other reason to think that all the shopkeepers in the world are secretly under alien control, so it's possible, but probably still billions to one against.

One might argue that world religions are an example of successful conspiracies,

I'd rather not consider it :) I think an element in a conspiracy is, well, hiding stuff. I think a religion where the clergy believe what they're saying is more of a self-perpetuating belief system (true or false) than a conspiracy.

There are definitely cases of religions where higher-ups don't believe but are just using it, but I expect that it's either (a) a limited number of people or (b) there are examples where they're shown up, even if no-one talks about it.

There may be some exceptions, I'm not sure. It's not quite a religion, but I think the Masons did surprisingly well at keeping the inner details secret until fairly recently?

And that that can easily look like a conspiracy to a naive observer,

Indeed, but I don't think it's just a matter of "looking like". I think there's a spectrum from "everyone acting in concert" to "everyone acting completely independently" with a big middle ground of "people tacitly enforcing the status quo without really talking about it" which is (a) plausible and (b) pretty much does count as a conspiracy, even if not the most stereotypical "everyone conspires in secret" one.

(no subject)

Date: 2012-09-13 02:44 pm (UTC)
jack: (Default)
From: [personal profile] jack
I am not sure I would go so far as to say that "any purported unfunded miracle cure IS going to be a conspiracy theory"

Sorry, I was trying to capture the thrust of your rant, but did paint with too broad a brush.

It depends a bit what you regard as a miracle;

I'm not disputing some cures can count as miraculous. Come to think of it, someone linked to the discovery/invention of hand-washing before surgery, which was basically miraculous, free, and widely condemned...

I would judge it pretty likely that there is a relatively cheap and simple cure for malaria within reach, but at least until Bill Gates got interested, there was shockingly little research into malaria, because malaria isn't a profitable market.

Good point.

I wouldn't generalize much further than that; cancer is one of the few areas where I'm confident that if there were an easy solution we'd have found it by now,

Fair enough. And I think my intuition says basically the same, that there's so much research into cancer it's startling if something simple and plausible were overlooked completely.

I think I wasn't sure which of my keywords triggered the rant, and because I wasn't very invested in the "unpatentable" and "deliberate suppression" parts of the story, it felt like you were condemning a wider swathe than you actually intended to.

*hugs*

(no subject)

Date: 2012-09-13 03:15 pm (UTC)
jack: (Default)
From: [personal profile] jack
*hugs* No, thank you, it was a great rant and the explanations were great :)

(no subject)

Date: 2012-09-13 01:36 pm (UTC)
cjwatson: (Default)
From: [personal profile] cjwatson
Thanks for this; it was an interesting read.

I guess your characterisation of the automatic geek response to patents as being about an evil suppression of our desire for free entertainment was rather flippant, but I can't agree with the basic notion there. The geek response stems from the fact that the patent landscapes in pharmaceuticals and software really are very different indeed.

As a professional programmer I do not read patents as a matter of personal policy, and I will not file for a patent unless required to do so by my employer (which is hopefully unlikely since my employer has spoken out against the system of software patents in the past) under terms that don't harm the industry as a whole. Software patent review is often dreadful, and so there are too many junk patents which cover "innovations" which were genuinely obvious to anyone skilled in the art when they were filed; too many "patent troll" companies who do no research of their own but buy up existing patents purely for the purpose of litigation; and, given that in some fields avoiding patented techniques is a complex science in itself, too much risk of increased damages for wilful infringement if I know about a patent in advance. This does particular harm in the case of free software, where the kinds of budgets required for defending legal action are not normally available. Given that a primary motivation for free software is the betterment of society, it can seem particularly unjust to its developers that a system supposed to promote innovation in society is being used against them to suppress it.

Furthermore, by contrast with the timescales you describe, the term of a software patent is long enough for entire subfields of the industry to develop, flourish, and become obsolete twice over, and they are often fundamental enough that it can easily become impossible to write any useful program without infringing, even once the common state of the art is at the point where teenagers in their bedrooms reinvent the "advance" without realising it's supposed to be difficult. Certainly some people are adamant that software patents must be dispensed with entirely; others would be willing to accept them if only the typical term didn't date back to the Intel 486 and predate most people having heard of the Internet.

So, the common geek response to the patent system is grounded in genuine problems, not merely a knee-jerk product of an anti-proprietarian world view. It's just in a different field.

(no subject)

Date: 2012-09-13 03:01 pm (UTC)
jack: (Default)
From: [personal profile] jack
I think that's basically right, except that I don't think my understanding of patent law has anything to do with those problems in intellectual property law, and every time someone attributes this to geeks generally I feel like I'm personally attacked and wonder "Am I wrong, AM I biased like this? Have I been contributing to this trend? I can't see any evidence that I have, but can someone else see evidence of my opinion that I didn't see myself?"

(no subject)

Date: 2012-09-18 01:55 am (UTC)
cjwatson: (Default)
From: [personal profile] cjwatson
Yes. And it is worth distinguishing actual free software developers from their fans, as you've done, because sometimes the former take rather more subtle positions than the latter; although not always.

I have what seems to be an appropriate anecdote. Some years back, there was a conference in Cambridge that involved an interesting-looking mix of free software types, media people, lawyers, and so on, talking about the "digital economy". I thought this was worth a look and went along. RMS was there and gave a very good and well-measured keynote early on; lots of people who'd heard of him only as a firebrand were suitably impressed. Later, a patent lawyer was giving a talk about how the patent system works from his point of view. It was fascinating and he laced his talk with enough sarcastic remarks to convince me that he wasn't of the opinion that the whole system was correct. During one of these remarks, RMS arrived in the lecture hall, got entirely the wrong end of the stick, and started yelling at the speaker from the middle of the aisle about how he was the corrupt tool of an evil system. Previous favourable impression: now not so much.

It is usually worth at least listening to one's believed opponents' entire position first!

(no subject)

Date: 2012-09-13 02:51 pm (UTC)
forestofglory: E. H. Shepard drawing of Christopher Robin reading a book to Pooh (Default)
From: [personal profile] forestofglory
I'm not a believer in conspiracy theories, but I do think that market/regulatory structure makes some medical research more likely to be funded than other medical research. So I'd like to see changes in that structure. (Also more public research money in general.) However cancer research is not really what I think of when I think under-funded medical research.

(no subject)

Date: 2012-09-13 02:51 pm (UTC)
ceb: (Default)
From: [personal profile] ceb
The thing that really annoys me about these kinds of flaps is the characterisation of everyone involved in the drug research process as amoral money-grubbing bastards. The mindset seems to go: drug companies want to make lots of money, so all the people working for them want to make lots of money. Why are they in a difficult and frustrating career like drug research rather than, say, banking? It must be so they can rub their hands and cackle at all the ill people they're making suffer.

Nnnnng. It makes me want to shout at people.

(And no, I have no idea how academics are supposed to fit into this either. Presumably you're all in it for the fame and power.)

(no subject)

Date: 2012-09-13 03:02 pm (UTC)
jack: (Default)
From: [personal profile] jack
:)

(no subject)

Date: 2012-09-18 02:00 am (UTC)
cjwatson: (Default)
From: [personal profile] cjwatson
In one of these stories that was going around recently I noticed that there was a bit where the researcher named some sum of money that would be enough to arrange clinical trials. I wondered just how much he was led into that by the journalist, and how appalled he was by the spin on the story when it came out.

(no subject)

Date: 2012-09-13 03:12 pm (UTC)
chickenfeet: (death)
From: [personal profile] chickenfeet
I'm totally with you on this. Until you have clinical trials results you don't have evidence that you have a cure and good luck with shutting up all the investigators involved in a clinical trial; see the Nancy Olivera case for example.

Also I'm sceptical that there is a single cure for cancer. I don't have your experience as a researcher but the notion that all malignant tumours have the same basic etiology is surely not true.

(no subject)

Date: 2012-09-13 07:50 pm (UTC)
synecdochic: torso of a man wearing jeans, hands bound with belt (Default)
From: [personal profile] synecdochic
FYI, patents last 20 years in US and UK/EU jurisdictions, so it's a little longer than 7 years. But yes, the lead time is pretty intense!

(no subject)

Date: 2012-09-13 08:38 pm (UTC)
synecdochic: torso of a man wearing jeans, hands bound with belt (Default)
From: [personal profile] synecdochic
Yeah, that's probably it -- it can certainly take 13 years from patent filing to bring a drug to wide distribution!

(no subject)

Date: 2012-09-13 10:09 pm (UTC)
ceb: (Default)
From: [personal profile] ceb
PS Ooh! Another Diorama fan! \o/

(no subject)

Date: 2012-09-14 04:58 am (UTC)
lilacsigil: 12 Apostles rocks, text "Rock On" (12 Apostles)
From: [personal profile] lilacsigil
The other big reason to be extremely skeptical about these kinds of scare stories is that very often they originate from quacks who are peddling some kind of miracle cure.

So much. I'm a cancer survivor, and while patient support groups have been very helpful to me - particularly as I had this particular cancer at an unusually young age - they're absolutely riddled with these stories, often with a handy website link. Australia has another level of conspiracy on this issue, which is that Big Pharma have developed this cure but the government won't approve it. Yes, because the cure for all cancers wouldn't be worldwide news...the government of a small country of 25 million people could suppress it!

(no subject)

Date: 2012-10-25 10:30 pm (UTC)
hairyears: Spilosoma viginica caterpillar: luxuriant white hair and a 'Dougal' face with antennae. Small, hairy, and venomous (Default)
From: [personal profile] hairyears
File that one with "The Automobile That Runs on Water".



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Miscellaneous. Eclectic. Random. Perhaps markedly literate, or at least suffering from the compulsion to read any text that presents itself, including cereal boxes.

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