Friday, May 27, 2011

How to Think About Medical Conspiracy Theories

As long as I can remember, some variant of the following urban myth has been floating around: "They've discovered a cure for cancer/AIDS/the common cold/hangnails, but it's being kept quiet because [some incoherent assertion about FDA, corporations, or the gubmint losing power, money, etc.]." Recently this has taken the form of a story that's been circulating about dichloroacetate, often under the tag line "Scientists cure cancer, but no one takes notice". There are lots of medical conspiracy theories, and there are some empirical facts on the ground about healthcare, biology, drug discovery and business that will help you evaluate any medical conspiracy theory that comes your way.

Above: pharmaceutical researchers meeting with your family doctor on a moonless night, whence they swear an oath in toads' blood to keep the cancer cure secret. Cthulhu ftagn.

It's been interesting watching this one bounce around the SkeptoSphere(tm) because it's pretty far outside the usual fodder for SkeptoMockery(also tm); there's not a pre-formed narrative for it. And this particular genus of conspiracy theories is near and dear to my heart because I'm a medical student, and because before medical school I was a consultant in the biotech industry (full disclosure). During that time I was fortunate to work with hundreds of smart, ethical people who wanted to find that cure. I never met the villain with the black suit and British accent who couldn't wait to give babies AIDS, although judging by Hollywood you would think they're everywhere. So here are a couple things to keep in mind the next time you hear a drug or medical conspiracy theory. (Where I mention FDA, if you're reading this outside the U.S., fill in your own agency. They all basically use the same strategy and have the same relationship to biopharmas in and outside their own countries.)

1. How would the conspiracy work? This is what I always wonder about with creationists. They often claim there's this conspiracy keeping down the Truth - yes, a conspiracy that involves every scientist in the world, half the American population, and every construction worker who ever found a fossil and insisted that no, no one put it there, it was really there. Do we all meet in secret with black robes and double pinky-swear not to admit that we made it all up? And why would we do that? The same goes for drug research. Do you know any industry research people or healthcare professionals? Do they have torch-soot on their shirts from their secret meetings? To give these conspiracy theories any credibility, you would have to at least think that medical professionals are gullible, and at worst think that they're actively evil. This principle is good for conspiracy theories in general: thinking about the mundane details of why people would do this, and who cuts the checks, tends to shed some daylight on things.

(Special point: every time I see a movie where spies are rappelling into a biotech lab with all kinds of cool lasers and lights and smoky stuff and some neat steel doors with magic DNA inside a whirring cyber-egg, I think "Why didn't I ever consult at a company like that?" Real biotechs, the small start-up ones anyway, are more like a university lab but with free espresso, better hours, and maybe you dress a little bit more like a grown-up, but also mostly cool people instead of those three weird grad students you always see rushing into the cold room and you don't even know their names.)

2. How would they keep it a secret? Most of the time, any particular researcher has many others breathing down their necks in the same line of inquiry, and there are journals, and there are patents, all of which publicize the researchers' progress along the way and are directly tied to the profit motive (without patents, your work isn't exclusively yours, which in drug development is a fate worse than death.)

(Another special point: patents exist precisely to encourage companies to make their findings public, in exchange for a limited period of exclusivity. Otherwise, we would revert to the age of trade secrets. While there is legitimate debate on the impact of patents on economic growth, there's very little controversy around the impact on biopharmaceutical discovery. Drug discovery is hard and expensive and slow, and if people can just wait you out and then start making the drugs on their own, they will, and no one can make money, so no one would do drug research. No patents, no drugs. I mean, come on, think of the meaning of the word "patent"! Used as an adjective means "clear"; it's not just a synonym for "very" when placed in front of "absurd".)

3. Follow the money. Good advice for everything! More generally stated, understand the incentives. This point is often raised regarding the anti-vaxxers. That is to say: if you blame someone for being greedy, but don't understand how that greed will distort their behavior, you need to study up. Vaccines are not a big money-maker, because they're mostly once-and-done deals. If you want to scrutinize meds that have some potential for marketing abuse, look at those which are taken chronically for life - psychiatric drugs, anti-hypertensives, and anti-cholesterol meds. These are real drugs, but companies are sometimes tempted to mine them for extra revenue by encouraging off-label prescribing (completely legal and ethical for docs to do at their discretion, completely illegal for companies to promote). Do note, however, that selling more drugs where they might not be 100% effective is exactly the opposite of withholding drugs, which is what these conspiracies are usually about.

4. Understand the rough outlines of how drugs get from test tubes to you. I'm not going into details here, but you can check out this summary (chart reproduced above - hey, want to bet a billion dollars on one of those arrows? This is why you don't see too many biopharma execs in Vegas; they get any urge to gamble and take huge risks out of their system at work.) But there are several points that are confused by people outside the industry. The players here are the company developing the drug (whose shareholders and employees want money, and also to help people), and the FDA (whose employees want to keep their jobs by not being too liberal in approvals, and also to help people). FDA doesn't care how little or much money a company is going to make on a drug, who owns the patent, or whether a CEOs feelings will be hurt by their decision. So any theory that involves FDA not approving something because it won't make enough money is wrong right out of the gate. Being specific to the compound mentioned above: from what I've read, it shows promise in animal studies and petri dishes of human cells. Great - but that's not even a tenth of the way to the finish line. Lots of things show promise at that level, and turn out to be toxic or not work for complex system level reasons we either coldn't have anticipated without doing the human studies, or still don't understand even in retrospect. Drug discovery is hard.

5. There is no necessary conflict between the profit motive, and healing people. Too many centuries of Christianity has left Westerners confused about morality, to the point where we're uncomfortable with the possibility of an act being moral if it's rewarded. Just for a moment, think about how exactly bass-ackwards that is! Essentially, that's saying "Goodness forbid that people be rewarded for doing good in the world!" Immanuel Kant might have been the worst of the lot when he took this to its logical conclusion and said that the only way you could be sure someone was doing a moral act is if it was actively unpleasant for them to do it, and they did it anyway out of a sense of duty. Got that? Abrahamic morality at its finest! So if you help an old lady across the street and you get any satisfaction at all out of having done a good deed, you were just being selfish. Only if you quiver with loathing for this worthless old creature but force yourself to do it anyway, only then are you being moral.

Forgive the rant there, but this is one of the major enduring legacies of Abrahamism and one which well-intentioned secular people still have trouble with. In this context, the point is that just receiving financial compensation for alleviating suffering reflects in no way on the morality of the act, because that depends on the fact of whether or not the person got better. Bottom line, healers at all levels of the healthcare enterprise are doing what they do for some reason that Kant would have called selfish, and later philosophers would have called their utility - whether they're taking money, getting satisfaction from the deed itself, increasing their academic credentials - and that's all fine, because it incentivizes the alleviation of suffering. It's worth noting the qualifier "necessary". If the pursuit financial reward (or personal satisfaction, or academic prestige) interferes measurably with the outcome - you're not alleviating suffering, or lying about it, to get more utility for yourself - then, obviously, there's a problem. Because humans are not perfect, that's why things like FDA and ethics boards exist.


a.) Companies/the gubmint/etc. do not actively surpress new drugs, but they might de-prioritize ones that won't make much money. So if that's the argument being made about dichloroacetate, then yes, that's plausible. Every year, every large company investigates and sets aside hundreds or thousands of molecules, because they think they found better ones; no doubt in almost every case there are patients that would have benefited more from one of the discarded ones, but we live in a world of limited resources. Furthermore, if a compound can't be patented companies will probably not choose to pursue it, because they'd be paying (on average) US$900,000,000 to get it to market, and then they'd have to somehow make that back to break even, without a patent. If "sustainability" is important to you, then that's about as unsustainable as you can get - ot would be a donation to public health. Fortunately, FDA has special rules that encourage companies to develop drugs for diseases with small numbers of patients.

b.) It takes a long damn time to get new drugs to market. Yes, it's hard. Partly because there is a monstrous standard of proof for safety and efficacy before you can start selling a new medicine. Jumping through all those regulatory hoops takes a long time and is extremely expensive, and it's just not feasible for anything other than a massively well-funded institution like a corporation. There is always a push-and-pull from patient advocacy groups and companies that want to ratchet back the regulation and get faster+easier+cheaper = more drug approvals, and other groups that not unreasonably don't want to sacrifice drug safety.

c.) It's worth pointing out that by far the worst abuses in medical research in terms of both morality and absolute numbers have been committed by people acting within governments (American, German, Russian, Japanese) rather than within private companies. Of course human beings in any context are capable of immoral behavior, but to put a fine point on it, if we want to prevent such tragedies in the future we're better served by examing history rather than Hollywood thrillers.

No comments: