Cancer in the News

Two separate articles about cancer hit the news recently, both of which elicited a strong reaction. One was about the occurrence of certain types of cancer often being due to chance rather than environment or lifestyle, and the other about cancer being the “best” way to die.

Reactions to the first article range from “dangerous viewpoint” “irresponsible” “garbage in, garbage out” “nihilistic” “bad science” to “smoke away” “time to binge” “told you so”. The article was published by researchers at John Hopkins University in Science, a top-tier peer reviewed journal. Although that does not automatically mean that the study is correct, it does imply that the study has been reviewed and vetted by people a lot more knowledgeable than myself and the typical commenter. It is irresponsible to dismiss a study as “garbage in, garbage out” or “bad science” simply because the implications do not fit one’s worldview.

Speaking of implications, what exactly are they? The typical strawman conclusion is that a healthy lifestyle doesn’t matter. However, that is not at all what the study concluded. The study stated that about 1/3 of the cancers studied could be attributed to genes and environmental factors. It did not look at all cancers (notably breast and prostate cancers), nor at other medical conditions, such as diabetes, which are very much linked to lifestyle. Not everyone gets cancer (much less the subset studied), not all cancers are incurable, and not all deaths are due to cancer. The “dangerous viewpoint” seems to be a kneejerk reaction to an imagined conclusion, a simplistic caricature of what the study actually says. Even at face value, putting the many obvious benefits of a healthy lifestyle aside, isn’t it worth it to improve one’s chances, even if the potential is a fraction of 1/3?

Reactions to the second article seem even more extreme, and mostly negative. Dr. Smith uses Mr. Bunuel, a well-planned end-of-life cancer case, to argue that compared to the other ways of dying, cancer is preferable. It gives the patient an opportunity to reflect and wrap up. Dr. Smith did not say that cancer is good, or that dying is good, a concept many of the commenters seem to be unable to grasp; he did make a case that out of all the different ways to die, cancer is less bad than the others.

We all must face death, and not enough of us have thought about it as carefully as we should. It is an event that greatly affects many, something too important to ignore because of a visceral aversion.  It’s not like we’re getting out of this alive.

Let’s see if an analogy can help take the visceral reaction out of the equation. If one were to be downsized from a company, would it be preferable to be given a month’s notice so one could tie up loose ends and handover work in progress, to be fired on the spot and escorted to the door immediately, or to gradually have your salary cut and be abused by supervisors until you leave in disgust?

End-of-life is not so cut and dry. Cancers, treatments, and circumstances vary widely, and perspectives are very different. A doctor is trained to be detached out of professional necessity, and it seems to be this perspective that most of the commenters find offensive. The commenters seem unaware that Dr. Smith has likely seen more cancer deaths than them combined, and a view from that perspective is probably worth considering with one’s brain rather than dismissing with one’s gut. I largely agree with this first portion of his post – I would choose time and manageable pain over sudden death.

I cannot agree with the last sentence, however. He states, “…. and let’s stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death”. Even in the context of his post, it is difficult to see how such a blanket statement could be considered reasonable. He specifically said not to waste money trying to “cure cancer” – not drugs with astronomical cost but merely extend suffering by a month or two, which would have been a more defendable position. Yes, a blog post is meant to be informal, but this is something that should have been taken out or properly qualified before hitting the “post” button.

Thought Experiment – Honest Deception

I had this idea about a decade ago, and actually seriously considered it for a while. Even though I’ve long abandoned it, it is quite interesting as a thought experiment as it exists in a moral grey space.

Background

I have been fascinated with placebos. It is explicitly designed to be ineffectual for the condition in question, yet it often induces an effect psychologically. Although the “Placebo Effect” is likely really due to the medical intervention and interaction, “Intervention Effect” just doesn’t sound as good. It is by nature deceptive, which is usually acceptable in a controlled trial; but in a real life doctor-patient relationship, it is difficult to get informed consent without sounding like a quack (except perhaps in this weird study).

I will share an anecdote about an ENT physician I know well. He owns and operates a clinic in a relatively rural area in East Asia. The clinic is extremely popular, with 300+ patients per day during cold and flu “high season”. As your incredulity sets in, the clinic record is over 500 patients/day (yes, for a single physician). This was decades ago, when clinics had their own pharmacies. There were several keys to success. One was managing expectations. For patients that came in after other doctors “failed” to rid them of their cold, he would tell them they would get better in a few days, and sure enough they would (duh). If the person just caught the cold, he would say it was more serious and wouldn’t be over for 10-14 days. The important part is that he would always give the patients a good dose of pills and capsules, which turn out to be mostly vitamins. According to his “market research”, the locals perceived the efficacy of the pills based on size (larger is better), color (more colorful the better, bonus points for two-toned capsules), shape (round is boring), and quantity. The pharmacy would already have cartons of individual combo packages of many large, colorful, shaped pills, which would be conveniently prescribed as “A” or “B” to save time. Not all placebos are created equal; back in those days, placebo discrimination was rampant.

Nowadays it is ethically questionable for placebos to enter a doctor-patient relationship, for obvious reasons.

Thought Experiment

Here is the thought experiment. It is difficult for a physician to take advantage of the placebo effect. Is it possible for a company to ethically sell placebos to the general public?

Currently there are already companies that sell pills with no active ingredients, but those pills are actually marketed as medicine. I consider those to be double placebos, with the giver and taker of the pill both receiving the placebo effect.

Imagine a company Obecalp Inc. It makes its pills and capsules, which contain no active ingredients, at FDA-approved GMP facilities. Aside from providing the medical field with placebos, it also has a consumer arm that sells to the general public. The consumer market is mainly for relatives of terminally or chronically ill patients with subjective symptoms such as pain.

The company provides full disclosure on its ingredients (or lack thereof). It also provides relevant literature and a summary of the latest research. Customers are explicitly told to expect that the pill will likely do nothing, and the placebo effect, if any, are likely to be for subjective symptoms only.  They are told that it may be detrimental to relationships since deception is involved, and should be used in addition to, and never replacing, proven treatments. In short, it requires informed consent.

The customers, not the doctors, would provide these placebo pills to their terminally or chronically ill relatives. This address several problems. It takes away the deception between the doctor and patient, and the accompanying financial dilemma (placebos must be charged the same as regular pills to deceive properly, even though they cost significantly less). It is by definition compatible with the principle of non-maleficence (“Do No Harm”), and may offer subjective improvements even without objective changes in the underlying condition.

Although arguably unnecessary, the company can address ethical issues about the price of the placebo by operating on a voluntary pricing model. That is, the company provides the placebos free of charge initially, and rely on the customer to pay whatever they think it is worth based on the outcome, perhaps with a suggested amount and a maximum cap (personal anecdote: I once used a voluntary pricing model at a garage sale, and people were confused without a suggested price).

I read somewhere that for controlled studies, placebo composition is not regulated nor is disclosure required; some are simply sugar pills, while others are designed to have the same appearance and even mimic possible side effects. For the consumer market this is obviously unnecessary. However, the company is free to provide a wide range of completely inert placebos in different shapes, sizes, and colors. The consumer can be confident that the pills are safe. It would be considered a “dietary supplement”, of which government approval is not required. Even the standard disclaimer “This statement has not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease” seems redundant but wouldn’t hurt.

What do you think? Could this Obecalp company ethically sell placebos to the general public?

Let's Break Homeostasis!

A common view on health, especially in Asian cultures, is that the root cause of maladies and diseases, especially cancer, is from an “acidic” body type, and that the key to good health and longevity is to achieve an “alkaline” body type through diet. This is often shared and spread on social media without second thought.

There are entire industries devoted to making products, such as alkaline water, based on this concept, along with countless internet memes and articles.

This view has been popularized by a Japanese doctor, who allegedly tested 100 cancer patients and found their blood to be acidic. The details are not known, however this sounds like a small retrospective cohort observational study. It is unclear if this study has been published in a peer-reviewed journal, or replicated independently, as I could not find it. Supposedly from this he infers causation and declares that an acidic body type is the root of all evil. Really? Assuming that his findings are true (doubtful for reasons to follow), an observational study by definition shows at most correlation. It cannot prove causation.

For example, say you look at a bunch of bad golfers, and you find that they share some common traits, such as poorly fitted, beginner clubs and a towel stuck in their back pockets. You look at the pro golfers and they all have pro clubs and no towels. It would be foolish to conclude that one is a poor golfer because of cheap clubs and tastelessly hanging towels, instead of other more plausible explanations such as luck, caddie, conspiracy, and minor details such as practice/skill level and hand-eye coordination.

OK, say the 100 known cancer patients all had acidic blood, and for some unknown reason were still alive. Since they were known cancer patients, most likely they were undergoing treatment (chemotherapy, radiation, etc.). It is possible that the acidic blood is a side effect from the therapy. It is also possible that the acidic blood was caused by the cancer, and not the other way around. Perhaps the instrumentation lacked calibration, or the author’s intentions were misaligned.

Let’s turn to an article oft attributed to and allegedly written by Dr. Kuo at the Veteran’s General Hospital in Taiwan. The claims are outlandish, but since it was reported by state run TV, it is likely that he actually did write this article. The claims are not automatically true because he is a medical doctor (argument from authority); nor are they automatically false because they do not fit my worldview. Each claim deserves to be looked at carefully and critically.

First the author commits the same logical fallacy about correlation and causation. Since this is the entire premise of the article, it should be dismissed. It’s like discussing the best strategy for surviving the zombie apocalypse.

The author claims specifically:

1. Acidic blood is the root of most diseases, based on information of unknown veracity and logical fallacy;

2. Clinical manifestations of acidic blood, without citation;

3. Four causes of acidic blood, without citation or reasoning;

4. Four categories of diseases causes by acidic blood, with no citation;

5. Six causes of acidic blood despite previously listing four;

6. Blood pH can be effectively influenced by food intake, with no citation;

7. People should attempt to increase blood pH level by eating specific foods;

8. Six categories of food from highly acidic to highly alkaline, without quantification;

9. Four types of people who are at higher risk;

10. Twenty three criteria to check if your blood is acidic (!) other than a pH test.

Let’s use the standard, universal definition of acidic being pH < 7.0 and alkaline being pH > 7.0. The central claim, of course, is that acidic blood is not healthy. Regular blood pH is between 7.38-7.42. Below 7.35, acidosis occurs, above 7.45, alkalosis occurs. To have acidic blood (pH <7.0) for an extended amount of time, would mean that your whole body acid-base buffer, i.e., homeostasis, is broken. It is technically true, however meaningless, that acidic blood is not healthy, since a termination event would likely occur quickly.

The truth is, everyone already has alkaline blood.

The clinical manifestations of acidic blood that the author states: “An acidic body type manifests itself in the following ways: dull complexion; athlete’s foot; lethargy; poor cardiovascular shape; obesity” are likely moot, as a dull complexion or fungal feet seem less important, especially when you are in a coma or dead.

To break acid-base homeostasis, it turns out, is not an easy task. One would think that bad things can happen if blood pH wanders outside of this very tight range; anybody that has taken chemistry knows that it doesn’t take much to alter pH levels. Wouldn’t it logically be easier to kill someone by injecting acid instead of, say, cyanide then? Actually, someone tried that. Enter Van Slyke and Cullen, who for some sadistic reason, injected a ridiculous amount of sulfuric acid directly into the bloodstream of a poor dog. The dog not only lived, but its blood pH level did not change by much. Presumably emboldened by this experiment, many others have proceeded to test the body’s acid-base buffer with a variety of acids and alkali, not only in dogs and cats, but in humans as well. All this happened in the early to mid 1900s, presumably before the time of IRB ethics reviews.  The body is really, really good at regulating blood pH levels.

It turns out, the easiest way to make your blood pH level higher, at least temporarily, is by hyperventilating. It is certainly more effective than the foods that the author claims, which are both inconsistent and have no prior plausibility. Whether you can keep hyperventilating constantly is a different story.

Out of curiosity, let’s look at some of the other claims.

Foods that are highly or moderately acidic: Egg yolk, cheese, white sugar, bread, tuna, chicken, cream, horse meat(!). I have strong doubts that these foods are in any way acidic, except for horse meat which I have not consumed, at least not knowingly. Even if you use the special pleading logical fallacy and say that these foods break down into something strongly acidic, it makes no sense because in order to do so, something strongly alkaline must be formed at the same time. It’s like pushing on the steering wheel to make the car go faster; it cancels out.

Foods that are highly or moderately alkaline: wine, grapes, egg whites, strawberry, carrots, lemons(!!!). Lemons are alkaline, so the author claims. Maybe that’s why I see all the heartburn sufferers instinctively reach for the lemon instead of the Tums at a frequency of well, exactly never. Perhaps the author really meant lemon-colored Tums; otherwise the thought that a scientifically trained medical doctor working in a top government hospital could believe that a lemon is alkaline would make me very, very depressed. And wary.

It is never made clear as to how these foods, when ingested in normal amounts can influence pH value of blood, after passing through your stomach, which is more acidic than Coke (pH 1.5~3), and then passing through your intestines, which is alkaline. Food is mostly digested and absorbed in the intestines, an alkaline environment.

How about some other claims. “Excessive intake of acidic foods result in acidic blood, which makes the blood sticky, causing poor circulation, cold hands and feet, stiff shoulder, and insomnia”. In other words, food affecting blood pH (not established with low prior plausibility) is further stretched to also increase viscosity of blood. Asserted as fact without citation or evidence, I did a quick search on the literature, and surprisingly did find a study from 2002 supporting the viscosity claim, but not the symptoms. No studies validated the premise of normal food intake having hemorheologic effects.

Let’s look at the 6 asserted reasons behind acidic blood:

1. Improper balance between acidic and alkaline foods.

2. Lack of exercise.

3. Psychological stress.

4. Acidic habits such as smoking and drinking.

5. Irregular daily routine.

6. Environmental pollution, especially water and air.

Let’s see….wine was touted as a highly alkaline food, but here it suddenly becomes acidic. I’m confused. Environmental pollution is a head scratcher, as the amount of ingested water necessary to influence homeostasis would probably be deadly on its own. And unless you’re living next to an active volcano, air affecting homeostasis is probably the least of your concern.

I am not saying that whatever the author is recommended is invalid. On the contrary, a lot of it is good, reasonable, common-sense advice on a healthy lifestyle. However, the pity is that a lot of this sound advice is given under the pretense of nonsensical, magical thinking. Sound advice should stand on its own, with evidence to back it up.

It is unnecessary to package it with misleading and factually incorrect medical conditions. An analogy can be made with say, murder. One should not murder, simply because it is morally unacceptable. Some claim that murder is unacceptable because a book from the bronze/iron age threatens that murderers will be tortured for an infinite duration, in a location with uncomfortably high temperature after death.  Convoluted, and simply unnecessary.

Health Freedom, continued

This is the raw dialogue between myself and BillyJoe7 on Dr. Novella’s excellent Neurologica blog.  I thought it was worth posting because I would like to expand a bit on the thought process behind it.  I apologize for the horrible formatting (blame Mycrowsoft).  It starts out with Dr. Novella talking about the standard of medical care, and ends with me shamelessly hijacking the topic.

  1. # Steven Novellaon 24 Oct 2012 at 11:32 pm

    raylider – that’s why I added “because of the tremors.” They are not a good reason to evacuate. That would mean it’s reasonable to evacuate every city after every tremor (or at least ones in earthquake areas).

    If a patient asks me, “should I get an MRI scan,” and the official evidence-based recommendation is no, I tell them no, not “it’s up to you.” They may have a tumor – anyone might – and that absolutely opens me up to lawsuits. But I’m relatively safe if I am following the science and the standard of care.

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  3. # raylideron 25 Oct 2012 at 1:06 am

    Dr. Novella,

    Thanks for the reply, but I have a further inquiry regarding the ethics of the following:

    “If a patient asks me, “should I get an MRI scan,” and the official evidence-based recommendation is no, I tell them no, not “it’s up to you.” They may have a tumor – anyone might – and that absolutely opens me up to lawsuits. But I’m relatively safe if I am following the science and the standard of care.”

    — Shouldn’t it be up to the patient? Yeah, the headache is 99% likely to not be a tumor. But if your prescription is to always not get an MRI, you will have a 100% chance of being wrong at least in the instance of the 1% chance that it is the tumor. I would guess the reason that you don’t say “it’s up to you” is because it’s not the patient’s money/resources to be commanding because insurance/government are paying. Given that the patient comes in with cash and their own money, shouldn’t it be up to the patient to decide whether he wants to investigate unlikely scenarios? Is it likely that it’s a tumor? No, it’s highly unlikely. Do you know for sure: no. Caveat: there are instances where unwarranted diagnostic tests are harmful by increasing the likelihood of a false positive, as in the case of a low prevalence disease and a test that isn’t specific enough, but let’s assume that was not a factor for the purposes of this argument.

  4. # raylideron 25 Oct 2012 at 1:08 am

    P.S. Can you clarify what opens you up to lawsuits? Saying “no” or saying “it’s up to you”?

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  6.  BillyJoe7on 25 Oct 2012 at 6:12 am

  7. Raylider,

  8. “Shouldn’t it be up to the patient?”

    No, it should not. Resources are limited. If everyone with a headache wanted, and got, an MRI, patients who have real indications for an MRI will be pushed to the end of a very long queue. They are the ones who are more likely to have a brain tumour and they will have a delayed diagnosis.

    “Yeah, the headache is 99% likely to not be a tumor.”

    Try 99.999%

    “But if your prescription is to always not get an MRI, you will have a 100% chance of being wrong at least in the instance of the 1% chance that it is the tumor.”

    Clearly, Steven Novella is not going to miss 100% of brain tumours that cross his desk.
    Obviously, if the headaches are accompanied by other suggestive symptoms, or if there are abnormal neurological signs, that would probably constitute a science-based ndication to do an MRI.

    “Given that the patient comes in with cash and their own money, shouldn’t it be up to the patient to decide whether he wants to investigate unlikely scenarios?”

    They would still be using up scarce resources (manpower, MRI machines), and some poor individual is going to miss out on his science-based indications for the scan or have a delayed diagnosis. If you think that is ethical, you have a different ethical sense than most doctors (I hope).

    “there are instances where unwarranted diagnostic tests are harmful by increasing the likelihood of a false positive, as in the case of a low prevalence disease and a test that isn’t specific enough, but let’s assume that was not a factor for the purposes of this argument.”

    Done.

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  10. # skeplankeron 25 Oct 2012 at 10:26 am

    Raylider and BillyJoe,

    If public resources are to be spent on an unlikely tumor expedition against the current standard of care, then it is clearly unethical.

    However, if the patient is sufficiently informed of the risks and benefits, false positives and negatives, and is still willing to devote his resources to get the optional MRI, unless a public hospital will bump a patient in need for an optional scan, I see no ethical problem with this.

    For example, in many parts of Asia, private MRIs are quite affordable and not uncommon. It is often less than a co-pay in the US (USD$200-$400 all inclusive, http://www.cth.org.tw/02department/depa02_5center8.html). Disclaimer: just an example, I am not associated in any way with this organization.

    On a tangent, I believe that a greater ethical problem arises when the cost of health care is artificially inflated due to an inefficient insurance system, and rendered inaccessible to millions as a result. When a health care provider will gladly accept self-pay for 1/10 of the price they bill the insurance company, something is seriously wrong.

  11. # raylideron 25 Oct 2012 at 12:23 pm

    BillyJoe7,

    “They would still be using up scarce resources (manpower, MRI machines), and some poor individual is going to miss out on his science-based indications for the scan or have a delayed diagnosis. If you think that is ethical, you have a different ethical sense than most doctors (I hope).”

    MRI’s are scarce? Why are they scarce? I don’t think a person who brings their own money is using anyone’s resources other than his own. It’s not as though a unit of MRI disappears because he used it. The patient traded his money, which can then be used to create more MRIs. It’s not as though when you buy an iPhone, there are less iPhones to go around. No, Apple uses the money to make more iPhones that are cheaper and better. So I’m not sure why that doesn’t apply to MRIs.

    May be I’m focusing too much on the hypothetical here, since we have a government controlled healthcare system and few people actually pay for their services. But given the exception when it is the patient’s personal resources at stake, it is absolutely ethical for him to trade his resources for other’s products. No one else is anymore entitled to someone else’s property.

    I’d say it would be unethical for the doctor to be the one that decides how to ration resources and place prices on other people’s lives. Yeah that’s great that the chance is 99.999 in the patient’s favor, but tell that to the family of the patient who went home with a tumor. The fact of the matter is, when the patient presents, the probability of him having a tumor is actually either 0% or 100%. And the 99.999 is the epidemiological figure derived from past populations, it does not apply to the individual. Also, it may be that in the case of the headache, the likelihood of a tumor is low, but the general cut off for most can’t-miss-Dx’s is what? 98%? You’re at 98% confidence that the patient didn’t have an MI, or PE, or whatever else? So you’re going to miss 2% out of every hundred and send them home? This happens all the time. Now, in the current system there is no other way, but I don’t see a problem with a person deciding how to care for themselves and using their own resources.

  12. # raylideron 25 Oct 2012 at 12:31 pm

    In fact, as you say “if every patient came in and got an MRI.” How AWESOME would that be? You would have tons of patients, paying out of pocket for MRI scans. The industry would boom, and the economy of scale would reduce the prices of MRI’s for everyone, while increasing quality.

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  14. # BillyJoe7on 25 Oct 2012 at 4:48 pm

    Raylider & skeplanker,

    You are talking about a different category or resources than I am.
    I’m not talking about personal financial resources, I’m talking about the world’s resources in time, money, and manpower.

    Not everyone can become a radiographer or radiologist. Of those who can, not all would want to be one. So there’s a limit already. Also governments, quite rightly, regulate to some extent how many go into the various professions. And there are market forces, but they don’t work as you suggest. If there is a siphoning off of a large section of they population into the lucrative fields of radiography, radiology, and MRI machine manufacturing (because everyone with a headache wants an MRI), there will not be enough farmers to feed us, carpenters to build our houses, and teachers to teach us how to do all these things.

    So there’s no choice. Radiographers, radiologists, and MRI machines are going to be rationed, whether we like it or not. The question is how do we ration them. The obvious answer, at least for readers of this blog, is based in science, not personal financial resources. It is also the ethical solution.

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  16. # skeplankeron 25 Oct 2012 at 9:14 pm

    BillyJoe,

    We are talking about the same resource, specifically the alleged scarcity of MRIs and radiologists. From my previous post, “For example, in many parts of Asia, private MRIs are quite affordable and not uncommon.”, the market forces have already brought the pricing down to an affordable level in those regions, where there had been, but no longer is, a rush of capital flowing into MRI imaging equipment investment, specifically self-pay private comprehensive health check-up clinics in Asia. The cost of a self-pay comprehensive 2-day health check was cut more than half to a bit over 1k as the number of clinics flourished. The public health system and resources were not impacted significantly as the clinics are private, for-profit organizations or branches. THAT is how the market really works. There have been no reports of people on public health care systems being denied MRI scans because the hardware and personnel were snatched up by private clinics.

    “A siphoning off of a large section of the population” is a strawman argument. A large section of the population woud also love to be the CEO of Mycrowsoft and make obscene amount of money. I’m sure most of them didn’t become CEO so they could be farmers and feed everybody to avoid extinction of the human race.

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  18. # BillyJoe7on 26 Oct 2012 at 6:22 am

    skeplanker,

    ” The cost of a self-pay comprehensive 2-day health check was cut more than half to a bit over 1k as the number of clinics flourished. ”

    A useless health check is still a useless health check when it is half-priced.

    Medical practitioners should be deciding what investigations should be performed. If there are clear evidence-based indications to do an investigation, it should be done unless the patient refuses. If there are clearly no evidence-based indications to do an investigation, then it should not be done and the patient should have no say in the matter. In the grey area between these two clear cut cases, then and only then should the patient have an input to the decision to do the procedure.

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  20. # skeplankeron 26 Oct 2012 at 1:05 pm

    BillyJoe,

    “A useless health check is still a useless health check when it is half-priced.”

    Your assumption is that a comprehensive health check is useless. Assuming it is a long shot (which arguably it is not), as long as the patient is properly informed, sometimes a hunt down a rabbit hole yields a rabbit.

    For example, a lottery ticket is a tax on those unfamiliar with the concept of expected value, and is one of the worst government-sponsored investments one can make. However, one should be free to squander funds on lottery tickets, despite what the mathematician recommends. Informed or not, it is the concept of free will. And in my opinion, this is exactly how CAM thrives minus the payout.

    “In the grey area between these two clear cut cases, then and only then should the patient have an input to the decision to do the procedure”

    I disagree with this viewpoint. In an extreme case, if Bill Gates wanted to buy an MRI machine and do MRI’s on himself, his dog, and dead fish, for any reason (health investigation, reclaim the Ig Nobel prize, etc.), nobody should have a say in how he spends his money, since an MRI machine is a commodity and not in short supply.

    Another distasteful example: People are free to purchase as many wasteful SUVs as they wish, and drive around in circles just for fun, even though this arguably wastes a limited resource (oil) and affects other (emissions).

    Unless one’s decision is clearly and directly affecting other’s well-being by depriving limited resources (e.g., monopolizing a resource), in my opinion one should have full agency of his own body, including how to utilize his available resources, and how and when to end his own life. It’s called freedom, and last time I checked, it was in the Constitution of the United States.

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  22. # BillyJoe7on 26 Oct 2012 at 2:31 pm

    Skeplanker,

    It is not my assumption. Routine health checks are not evidence based activities. In fact, the evidence is that they are not beneficial and do not save lives. On the contrary, they tend to lead to further useless chases down rabbit holes. The fact that occasionally a treatable problem is picked up is not a justification for their use.

    I don’t buy lottery tickets for that very reason, but if you want to buy one on a whim, go right ahead. But please do not waste limited medical resources on a whim. Medicine is not a commodity to be bought and sold on a whim, it is a scientific activity. Or it should be. Or don’t you support the purpose of this blog which is to promote science-based medicine.

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  24. # skeplankeron 26 Oct 2012 at 8:25 pm

    BillyJoe,

    “Routine health checks are not evidence based activities. In fact, the evidence is that they are not beneficial and do not save lives.”

    I would be interested in seeing this evidence. The following is the opinion of the NIH:

    “Regular health exams and tests can help find problems before they start. They also can help find problems early, when your chances for treatment and cure are better.”

    “Medicine is not a commodity to be bought and sold on a whim”

    I should stop buying aspirin then. Medicine, medical equipment, and medical services are commodities. You can buy it with money, and not have to rely on an authority to determine what is best for you or what level of care you must receive.

    “Or don’t you support the purpose of this blog which is to promote science-based medicine”

    I support SBM fully. But above all I believe in freedom.

    I believe that better education in critical thinking to be the long-term solution, which I feel is better than the Darwin way.

    This discussion is WAY off topic and I apologize to Steve for that.

    BillyJoe, if you want to continue discussion about health freedom, I suggest we do it here: http://notsofoulmouthedrant.blog.com/2012/10/18/health-freedom/

  25. (deleted)

  26. # BillyJoe7on 27 Oct 2012 at 1:01 am

    Skeplanker,

    The opinion of the NIH is not evidence.
    I’m not going to provide you with the evidence but, if you want to find the evidence for yourself, I will give you this reference as a starter:
    http://www.sciencebasedmedicine.org/index.php/re-thinking-the-annual-physical/

    And how is buying aspirin a whim?
    There is science-based evidence of benefit. Unlike an MRI for a headache.

    But health freedom?
    This is for health fraudsters to rip off the public without government interference.
    At least I know where you are coming from now.

  27. (deleted)
  28. # skeplankeron 27 Oct 2012 at 12:02 pm
  29. BillyJoe,

    From the first line of the link you posted:

    “Please note: the following refers to routine physicals and screening tests in healthy, asymptomatic adults. It does not apply to people who have been diagnosed with diseases, who have any kind of symptoms or signs, or who are at particularly high risk of certain specific diseases.”

    I agree with that disclaimer. However a blanket statement saying a health check is useless, or that further investigation of a symptom is useless, I cannot agree with. An MRI for a headache, depending on the nature of the headache, in my view can be possibly construed as “further investigation”. I reviewed Steve’s original post and it actually did not mention headaches specifically, so it was presumptuous of us I guess.

    I mentioned aspirin as an example to illustrate the fact that medicine is in fact a commodity, and in most cases if one chooses to procure more than is reasonably recommended, it can be wasteful but does not materially affect others, and one should be free to do so, however ill-advised.

    And the last point on fraudsters ripping off the public under the guise of health freedom, I would completely agree with that. My position is that even though I do not like, much less advocate, people being ripped off, people should have the choice to *voluntarily* be ripped off with informed consent. There is a subtle difference.

  30. (deleted)

  31. # BillyJoe7on 27 Oct 2012 at 3:56 pm

    Skeplanker,

    It seems your area merely confused by the terminology.
    A “health check” in medical parlance is a “routine physical”, and any test done as part of a “health check” is a “routine test”. Doing an MRI for a headache falls into that category. There must be additional symptoms or signs that lead to an evidence based decision to do an MRI.

    “people should have the choice to *voluntarily* be ripped off with informed consent. There is a subtle difference.”

    I think you’re confusing subtlety with confusion. (;
    I must remember that sentence:
    people should have the choice to voluntarily be ripped off with informed consent.

  32. (deleted).

  33. # skeplankeron 29 Oct 2012 at 1:24 am

    BillyJoe,

    I agree that there was imprecision when I used the term “health checkup”. It is not a “routine physical” but a “comprehensive screening test”, as “routine physicals” do not generally include the advanced screenng tests performed. I originally brought up the cost of this optional screening package to point out the fact that MRIs are neither scarce nor uncommon, and without explicitly saying so, implying that one could get an MRI scan even if insurance did not cover the expense. I argue that all this is irrelevant for the key issue that we differ on, which is whether a patient has the right to spend his own money on a medical procedure (specifically, an MRI test). You state:

    “If there are clearly no evidence-based indications to do an investigation, then it should not be done and the patient should have no say in the matter”

    My stance is that a patient should be free to do whatever he wants to himself, subject to limitations stated previously. In other words, if it on his own dollar, the patient should absolutely have a say in what treatments he gets or refuses, whether it is SBM or quackery.

    If a company is subsidizing the gasoline in an employee’s personal vehicle, which is recommended to run on regular, it would be unreasonable to ask the company to pay for premium. However the employee is free to believe in whatever woo he wants and fill up on premium, add in octane boosters, miracle fuel pills, and whatever useless additives money can buy, possibly causing damage to his own car, if it is on his own dollar. The same concept applies.

    That is “the right to be ripped off”. The difference is although neither of us think people should be ripped off, you think that people do not have the right to be ripped off, and I do. That is the subtle difference I am talking about, which hopefully is less confusing.

  34. (deleted)

  35. # BillyJoe7on 29 Oct 2012 at 6:46 am

    skeplander,

    If you support the science-based medicine promoted by this blog, then “health freedom” is out the window. Only medical experts can decide what is science-based medicine because only medical experts have the background knowledge, and the specific knowledge, and the working knowledge to make those decisions. To go with the decisions of non experts like patients against the advice of medical experts means giving up on science-based medicine.

    An additional reason why patients should not be allowed to use limited resources against science-based medical advice just because they can afford to do so, is because others with well-defined indications for testing for diseases that can be cured if diagnosed early, will end up with delayed diagnoses and worse prognoses.

    ” you think that people do not have the right to be ripped off, and I do”

    Yes, I’m no libertarian. People should be protected against fraudsters. Everyone, you and me included, is or has been at some stage of their life, vulnerable to being defrauded. I see no logic in assisting fraudsters by refusing to protect their potential victims.

  36. # skeplankeron 29 Oct 2012 at 8:42 am

    BillyJoe,

    I understand your viewpoint and although I respectfully disagree, I rest my case.

  37. (deleted)

  38. # BillyJoe7on 29 Oct 2012 at 2:02 pm

    skeplander,

    I think I understand your viewpoint as well, but I find it hard to respect it.

    Everyone for themselves is not even the law of the jungle.
    The law of the jungle includes reciprocal altruism and kin selection.
    I think we can do better than that.

I got too busy to continue on with the dialogue and I ended it.  However I do have some time now and will expand on it a bit here:

BillyJoe7:  “If you support the science-based medicine promoted by this blog, then “health freedom” is out the window. Only medical experts can decide what is science-based medicine because only medical experts have the background knowledge, and the specific knowledge, and the working knowledge to make those decisions. ”

SBM and health freedom are not mutually exclusive; that is a false dichotomy.  In a perfect world, medical practitioners are able to provide the best advice.  In the real world, medical practitioners are human, and can be spectacularly bad at assessment

BillyJoe7: “To go with the decisions of non experts like patients against the advice of medical experts means giving up on science-based medicine.”

First there is the faulty implied premise that getting an MRI scan (which is exploratory in nature) when evidence does not warrant it, is a decision that is *mutually exclusive* with SBM.  If it does not alter the course of treatment, it is simply wasteful and not mutually exclusive.  The conclusion does not follow in the MRI situation.  If a patient were to decide against taking life-saving drugs and favors prayer or magic, that is altering the course of treatment, and I concur that is giving up on SBM.

BillyJoe7: “Everyone, you and me included, is or has been at some stage of their life, vulnerable to being defrauded. I see no logic in assisting fraudsters by refusing to protect their potential victims.”

From a purely moral standpoint I agree with this statement.  I would also like to note that protecting people from their own stupidity is a noble gesture that is seldom well-received.  However, I am not against all forms of protection against fraudsters.  I am against an “absolute” protection in the form of an authoritative mandate, science-based or not.  In relevant terms per discussion above:

BillyJoe7 thinks that the patient does not have the choice to get an MRI, self pay or not, if the current guideline says it is unnecessary.

I think that once properly informed of the risks and benefits, the patient should be able to choose to undergo an MRI, if is willing to use his own resources and not materially affect others by doing so. 

The right to get an MRI should not be confused with the need to get an MRI.  For example, one should be able to get an MRI scan out of simple intellectual curiosity.  To mandate that one *must not* get one unless medically necessary even if using private resources, is not compatible with reality nor is it conducive to intellectual freedom.

Disclaimer: the context is different in that BillyJoe7 likely referred to the MRI for a headache, which is for diagnosis purposes.  My main point is that it should not be an authoritative mandate, for reasons beyond medical necessity.

BillyJoe7: “An additional reason why patients should not be allowed to use limited resources against science-based medical advice just because they can afford to do so, is because others with well-defined indications for testing for diseases that can be cured if diagnosed early, will end up with delayed diagnoses and worse prognoses.”

I agree if the premise of MRI resources were limited to the point where by getting an unnecessary MRI would deny someone in the immediate population that truly needed one.  That has been shown to be false.  People that would not be affected either way (remote villages) do not factor into the equation.

BillyJoe7: “I think I understand your viewpoint as well, but I find it hard to respect it. Everyone for themselves is not even the law of the jungle. The law of the jungle includes reciprocal altruism and kin selection. I think we can do better than that.”

Strawman argument.  I never advocated an “Everyone for Themselves” viewpoint.  I am not against some forms of regulation aimed at reducing quackery.  I am against absolute mandates that say “you must not do this because it is not compatible with our current understanding”.  I am ok with a regulation saying “this practice is not compatible with our current understanding, here are the risks of this unproven method, and if you choose to practice this on yourself, do it on your own dime”.

I fail to see the immediate relevance of “reciprocal altruism” and “kin selection” in this context.  In a Darwinian sense, those that choose to undergo ineffectual treatments will likely be not as successful in surviving and reproducing.  An authoritative ban may be a well-intentioned altruistic measure, but there is little reciprocation, and the social cost is difficult to measure.

I have two more analogies (I like analogies).

Tobacco, drugs, and alcohol.  Smoking is known to be hazardous, drugs have little social benefit, and excessive drinking is not conducive to well-being.  Banning tobacco and drugs, and banning binge drinking would be a science-based approach.  Yet that is not a socially acceptable option.  Most people would accept a warning label and education campaign.  Most would also accept regulation that limits its effects on others, such as second-hand smoke and public drunkenness, and driving under the influence.

Religion.   There is plenty of bigotry, intolerance, and hate in many of the prevalent monotheistic religions.  Yet it is stated in the Constitution of the United States, that people are free to worship any imaginary friend or friends of their choosing, as long as the practice is private and does not affect others.  Hence the separation of church and state, mosque and state, temple and state, FSM and state.

Freedom is not imposing one’s belief on others.  I stated “the right to be ripped off” just to make the point that I am willing to defend freedom, even if I do not agree with some of the consequences.

One thing I like about science blogs is that at least the conversations are more intelligent and the viewpoints more thought out.  Those who cannot formulate a coherent argument usually pick easier places to post their nonsense.

Any comments are welcome.

Health Freedom

Freedom is a topic more complex than most realize; certainly more than I had realized.  In the sense of freedom of choice, more freedom does not necessarily mean one will be happier (see work by Barry Schwartz), nor does it mean that one will necessarily make the best decision (Bounded Rationality by Herbert Simon).  However that is the topic of another post.  Here I write my thoughts on the specific topic of health freedom.

On one extreme of health freedom is the days of the snake oil, where anything can be sold to anyone with any health claim, a full “buyer beware” system.  On the other extreme is an authoritative mandate that all must prescribe to an official course, scientific or otherwise, where one cannot decide on one’s own fate, even life or death.  Clearly neither are reasonable options.

In the US the situation is somewhere in between, with drugs and supplements regulated to a certain degree.  The National Center for Complementary and Alternative Medicine (NCCAM) is responsible for investigating complementary and alternative medicine scientifically, and this blog post shows how I feel about it.

Not too long ago, before widespread use of the internet, mainstream healthcare consisted of two words – “Doctor’s Orders”.  The MD was the expert, the professional, the authority.  Not many people were informed, and far fewer people misinformed.  A good old fashioned PDR was all that was needed.

The information revolution that came with the internet changed the entire landscape.  All of a sudden information is at your fingertips (whether one can properly make sense of it or not is a different story).  Unfortunately the driving force of the internet, the search engines, are designed such that search results are ranked based on popularity; accuracy plays no role in the ranking.  A vicious circle forms – medically accurate sites are unpopular because few understand the language, and the interfaces apparently have been designed by sadistic dysfunctional underpaid trolls on drugs, while quackery sites rise quickly by virtue of being written in plain English, sleek, well-designed, and have no shortage of salient material including false promises, unsupported claims, logical fallacies, plenty of anecdotes and “user testimonials”.

Suddenly to the physician, faced with a barrage of semi-informed inquiries, dubious questions, and the occasional legitimate inquiry of the latest e-pub clinical study that he didn’t even know about, that PDR seems about as useful as an outdated Yellow Pages, and the CME seems woefully inadequate.

Nowadays it is far more common for the physician to present options for treatment and defer the actual decision to the patient.  When done properly this is a reasonable approach, however it is time consuming and often impractical.  More often than not it is a way to shift the responsibility and provide an easy out for the physician.  Options are not equally valid simply because they are presented side-by-side, and although the physician is professionally obligated and morally bound to present the best objective expert opinion, sometimes it is not practical to present the options adequately for the often under-educated consumer to make an informed choice.

The bottom line is, although truly horrible decisions can be made with real harm and danger, I feel that a mentally competent adult should be able to make any choice regarding his/her own health, regardless of intent, up to extreme decisions such as suicide.  What I also feel is that one should NOT be free to impose his/her choice upon another person, regardless of intent, through action or inaction.

For example, one should be free to choose if, when, and how to die, be able to refuse treatment of any kind, and pursue whatever medical experiments on himself.  However one should not be free to impose this on anyone else, for example, people under his care, children, elderly, etc.  Parents should not be given free rein to decide whether their kid should get a qi manipulation instead of emergency surgery, or to replace life-saving medication with homeopathic concoctions; that is what I consider child endangerment.  It should be considered reckless endangerment when people with HIV knowingly have unprotected sex (inaction), even if one believes that he is cured of it through whatever modality.  Unless a subsequent test shows that one is HIV negative and no longer a risk.

This is my stance on health care, on religion, and on life.  One should be free to choose to believe in whatever they wish, be it scientific methodology, religion, magic, conspiracy, fairy tales, ideology, whatever.  One should be free to act upon those beliefs, as long as the effect is confined to himself or to consenting and informed participants.  One should be able to believe in any monotheistic or polytheistic god,  but should not be able to blow up those who do not subscribe to the same view.

It would be easy to make a straw man argument that I should, by extension, oppose all regulation and advocate an anything-goes, buyer-beware snake oil system, which is not the case.  I am simply stating that people should be free to do whatever they wish when it comes to their own body, informed or not.

An informed decision is only as good as the information it is based on, and the process to come to that decision.  The information is only as good as the trustworthiness of its source, since few of us are directly involved in raw data.  The human mind has evolved not to think scientifically, and that is why opinions, reviews, and anecdotes influence our decision-making process more than it should.  Emotions aside, the reality is that it is difficult if not impossible to make an optimal decision on complex matters anyway, since we are limited by the information available, the cognitive limitations of our minds, and the amount of time to make a decision considering the cost of gathering and processing information.

I personally subscribe to the cautionary principle of “do no harm”, keeping in mind that inaction may be a better option than action considering the potential harm.  I consider evidence based on scientific merit only, and whenever possible I read and try to evaluate the methodology and quality of the underlying studies.  I try not to be influenced by anecdotes, testimonials, and personal biases, however that is self-delusional to a degree.  I will get a typhoid fever shot to protect myself if I know I will be served by Typhoid Mary, since it is quite clear to me that typhoid fever is caused by bacteria rather than “excessive heat/wind” or “imbalanced energy”.  To those that do not, hey, it’s a free country.  I promise not to judge, unless it presents a clear and present danger to others.

Drugs and Supplements

Most countries have the equivalent of the FDA in the US, which regulates medicine and supplements to a certain degree. In 1994 the Dietary Supplement Health and Education Act(DSHEA) was passed, under which dietary supplements fall under. Of course having multiple industries and large amounts of money involved is not conducive to the best outcome for the consumer, but that is the reality. In colloquial and tribal terms, Big Pharma and Big Supplement got their territories carved out.

The main difference between drugs and supplements is that, for drugs, pharmaceutical companies are required to scientifically prove efficacy and safety, and claims can be made for the specific use approved. For supplements, unless it is a New Dietary Ingredient (NDI), manufacturers are practically free to do whatever they wish. Technically there are recent requirements to adhere to cGMP (2007, to ensure production quality), however in reality there is widespread non-compliance. It is up to the FDA to prove that a supplement is unsafe, and so far it has only done so on one occasion with ephedra, and nowadays does little more than posting warnings on its website and hoping people read them. Regardless of whom is to blame for the apparent lack of resources in the FDA, the fact remains that this part remains mostly unregulated.

One of the rationales behind supplements was that supplements were presumed to be safe because of long history of use. The huge cost of double blind, randomized controlled studies are prohibitively expensive and time consuming, and seemed like overkill for innocuous supplements. However, in reality, naturalistic fallacy aside, most supplements are far removed from their original states, with the active ingredient extracted and concentrated beyond what could have been reasonably consumed traditionally – much farther along the dose-response curve than its original form. In other words, an unregulated drug. There is no requirement for efficacy or safety studies. The reason you rarely if ever see a “Contraindications” section for supplements is not because it does not exist, but because it is not required and often unknown.

Of course, many of the supplements, especially traditionally known vitamins and minerals, have been well studied scientifically and the pharmacodynamic and pharmacokinetic properties are well known. Others have evidence ranging from peer-reviewed studies to fake anecdotes.  This graph beautifully shows some of the supplements, uses and current significant studies or lack thereof; the ranking is somewhat subjective but useful as reference.

My viewpoint is practical and some would say pessimistic or depressing.  I believe that regardless of multiple negative scientific findings, short of outlawing a product, actual behavior will not be significantly changed, due to confirmation bias, cognitive dissonance, distrust or just plain stubbornness.  It only takes one small scale, poor quality preliminary study with bad methodology, cherry picked data with dubious funding and strong researcher bias to be touted as the next miracle drug, I mean supplement.  The fact that journals rarely publish replication studies, especially when it contradicts prior claims, does not help instill trust either.  It is a sad but true reality.

Surprising Thoughts on NCCAM

According to their website, the mission of the National Center for Complementary and Alternative Medicine (NCCAM) is to define, through rigorous scientific investigation, the usefulness and safety of complementary and alternative medicine interventions and their roles in improving health and health care.

In my view, NCCAM is more of a politically driven organization than a serious scientific establishment. The fact is that it has spent more than $1 billion on research with limited results, with positive results being from rather poor quality studies (size, blinding, methodology, etc.) and mostly on subjective reported results (pain).  The most celebrated recent headline grabbing meta-analysis on acupuncture (Vickers et al.) did conclude a very modest advantage on certain types of pain.  However from my understanding, the treatment efficacy when compared to placebo is only about 30-40% better than what you would get by randomly poking yourself with a needle or toothpick.  Honestly it is not what I would write home about but hey, everybody has different standards.

I surprise myself as I write the following, but this is how I currently feel:

Although it has been so far unproductive and arguably wasteful, contrary to what one might think, I actually have very little problem with the NCCAM’s existence, as long as it adheres to scientific methods. From a business point of view, this is simply a pet project, the cost of doing business. Their annual budget is less than $150 million, which is about what the US pays on interest alone on its national debt every 3 hours, in other words, petty cash. It is a relatively small price to pay to give a punching bag to a senator who has the view that “It is not necessary for the scientific community to understand the process before the American public can benefit from these therapies”. This statement makes the assumption that the therapy (bee pollen for allergy) is beneficial (not supported), is safe (not true, a 10 second search yielded this and this, ironically allergy-related), and needs no scientific evidence for the general public to use. Strangely enough, under DSHEA, bee pollen is a supplement and can already be used by the general public; you can take all you want, but simply cannot make claims that it can treat allergies. I find it sad and disturbing that someone with this thinking methodology is the chairman of the Senate Committee on Health, Education, Labor and Pensions.

Of course, there are moral implications. The layperson could take an investigation of a treatment (however implausible), hell, even the organization’s existence, and mistake it for an illusional, official endorsement. For example, if there were an official “National Center for Bigfoot Affairs” under the US Fish and Wildlife Service, it would not be unreasonable for the layperson to presume that Bigfoot existed.

I see it as part of the inefficiencies of the system.  For example, in a corporation, there are internal and external inefficiencies, key personnel get certain perks and privileges, pet projects, reciprocal back-scratching, you name it.  Yet often nothing is done about it, because the hidden cost of eliminating some of the inefficiencies far exceed the savings.  The savings realized by nickel and diming your employees to death are far exceeded by the price paid in lost productivity and loyalty.

Even though I have no problem with the NCCAM budget, it pales in comparison with the true cost, which is the enormous amount on money spent on CAM by the public under the misguided implicit endorsement of NCCAM.  I argue that the money would be spent anyway, with or without NCCAM.  I believe that most money spent on CAM is spent to feel good, to feel empowered, to feel that they are taking charge of their health, to feel liberated against Big Pharma, Big Government, Big Food, and Big Whatever.  The therapeutic value lies more in the patient/care provider interaction, a healthy dose of blissful ignorance, and reinforced by the act of spending itself (based on cognitive dissonance theory), rather than a measurable physiological effect.  Evidence-Based Medicine and Science-Based Medicine would likely disagree, but from a business, utilitarian, moral-free viewpoint, an immeasurable but nevertheless real benefit (unit of happiness, perception of pain relief) being traded for money voluntarily seems like a fair trade to me.

The real moral quandary is when people delay or forgo proven treatments due to their belief in CAM and cause real harm.  Too many of these happen unfortunately.  Although many can be considered Darwin Awards winners, many happen to babies, children, and those relying on help.  Those unable to care for themselves and most in need of help, through no fault of their own, are put in harm’s way by well-intentioned but ill-informed caregivers.  As tragic as the situation is, I callously argue that the existence, or lack thereof, of NCCAM would not likely significantly alter the situation.  The majority of decision-makers who chose the path to CAM-related serious harm and deaths likely possess a pathological mindset far too extreme to have their behavior influenced by the mere existence of a government organization.  A Taliban suicide bomber is unlikely to take off his bomb suit just because the Pakistani government opened up a National Center for Religious Tolerance.

In an ideal world, complementary and alternative medicine would be proven or rejected solely based on merit and high scientific standards.  In reality, CAM relies on a sympathetic governmental agency in which many would like to discount and discard the careful, rigorous examination process (not conducive to positive results) and treat opinions and anecdotes as data.  This is not an ideal world, and I settle for this.  I say let those that want to explore mysterious, unproven, implausible modalities do so.  If an effective therapy or modality emerges, great.  I await that day.

Intuition

Intuition, simply put, is a gut feeling.  It could be based on prior knowledge, pattern recognition, an unconscious reaction, even superstition.  It is useful in making quick decisions on the spot, say, when you are alone in the jungle and hear rustling in the bushes.  But in reality, it is a lousy basis for important decisions.

Let’s look at this example.

Imagine a fictional Foobar disease, which is always fatal, not common but not overly rare either, with an overall occurrence of 0.1%.  There is a test that is exceptionally sensitive (100%), which means that if you have the disease, this test will definitely identify it.  The test also has a very low false positive rate of 1% (99% specificity).

Out of curiosity, you take the test.  It turns out positive.  Ouch.

Quick!  Based on your gut feeling, what are the chances that you have this fatal Foobar disease?

95%? 90%?

No.

The correct answer is around 9%.  The approximate calculation is as follows (for exact calculations use Bayes’ theorem):

Out of 1000 people, only 1 will actually have the disease (0.1%).  The test, with a false positive rate of 1%, is expected to incorrectly identify 10 people as having the disease, along with the 1 person that actually has the disease.  Out of the 11 people identified as positive, only 1 will actually have it.

Counterintuitive, but true.

Now try telling that to the people that just tested positive for Foobar and blew their entire life savings at the casino.

When the US Preventative Services Task Force changed the guidelines for mammogram screenings, it was based on scientific evidence.  Same thing with prostate cancer screenings (PSA test).  The test intervals were lengthened (or eliminated) because there was no evidence that it actually provided actual benefit in the general (not high-risk) population.  The public immediately fired back, simply because it is highly counterintuitive: how on earth could someone oppose extra testing?  Conspiracy theories immediately surfaced and the issue soon became a political issue instead of a fact-based discussion.

It is unrealistic to expect everyone to look into and fully understand the underlying reasons, not because of intellectual laziness, but because those reasons often lie outside their realm of expertise.  Sadly enough, the most vocal opinions are usually shouted out by those that understand the least.  And although often treated otherwise by the media, volume does not equal correctness, understanding, controversy, much less consensus.  And as elitist as it may sound, I believe that knowledge is not a democracy, and public policy (especially on complex scientific issues) should be debated and guided by relevant experts, not by popular vote.

Scientists are generally the least confrontational and least vocal group, and politically have the least influence.  And let’s face it, the jargon-laden, carefully crafted, highly qualified statements that are spewed from their facial orifices don’t exactly appeal to voters.  So politically, are we doomed, in a Darwinian sense?  I’ll go out on a limb and say no, because although suboptimal, thankfully and ironically, ignorance is global.  Politicians everywhere are elected by popularity and not intelligence or expertise, and dictators do not rule because of oversized brains.  We are no worse off if everyone else is equally as bad.  At least that is my intuition.

* afterword: Putting the issue of limited resources and fairness aside, I am not opposed against extra testing, provided that the person fully understands the implications, risks, and what the test results actually mean, if anything.  I do oppose unnecessary testing, which I define as any test that will not change the course of action.  It makes no more sense to rearrange the deck furniture on the Titanic than it does to disinfect the death row inmate’s arm before giving him a lethal injection, or to order a Pap smear for a 90 year old.