Morality and Reason

I'm not quite buying into the hype - it remains to be seen what benefits to humanity will ensue from research using embryonic stem cells. But, while we can argue over the appropriate allocation of scientific resources, I am very happy to see that the new administration will not allow irrational ideology to stand in the way of scientific investigation.

There is of course a difference between ethics and facts, and we can't have productive discussions if we don't keep them straight. So you might say to me well, if somebody believes that human life begins at conception and zygote or a blastocyst are human beings, that's just their belief, you can't argue with it. In this case, however, I can, because such a belief is illogical and traps anyone who holds it in inconsistency and absurdity.

The embryos in question under the ban president Obama just lifted are left over from in vitro fertilization. If they aren't used for research, they will be destroyed anyway. Ergo, if destroying them constitutes "destroying innocent human life," the bishops and evangelical fundies should be far more vociferous in their opposition to IVF than they are to stem cell research, because far more embryos are created and destroyed for purposes of IVF. If they are used in stem cell research, there is at least some benefit, but either way, innocent human life is destroyed. But the bishops and fundies aren't opposed to IVF, aren't clamoring to outlaw it, don't even discuss it. Why not?

Second, it doesn't require IVF to destroy zygotes and embryos, it only requires nature. Most of the human embryos that are created by doing what comes naturally never develop into babies. In fact most of them never make it to become fetuses. Most of the time, the woman never even knows she was pregnant, or she may only suspect it due to a late period. If these lost embryos are indeed innocent human life, then this is by far the greatest public health catastrophe on earth, and we should be redirecting all of our scientific resources away from diseases that afflict people who have already been born, and toward ending this horrific holocaust. But I have never heard anyone calling for an end to the slaughter.

Finally, it is very difficult to justify the position that a microscopic ball of slime with no nervous system is a baby. This supposedly "ethical" position is in fact a mystical, irrational belief, specifically that upon the fusion of gametes, an unobservable, non-material entity called "God" endows the slimeball with a non-material, unobservable entity called a "soul," and it is this soul which makes a human being, not the capacity to experience or to think. Since there is no evidence for the existence of a soul, nor can there be any such evidence in principle since it is by definition outside of the observable universe, nobody ought to believe this. It's just a bunch of made up words that don't mean anything.

The really good news? The percentage of Americans who tell a pollster they have no religion has nearly doubled since 1990. And I'm linking to Fox News just so they can suck on it.

Let 100 flowers bloom

Whoo, I don't know how people like Revere and PZ Myers do it. I'm in the middle of two proposals, three papers and a conference presentation, and I'm supposed to be reading transcripts and analyzing data (ha!), and here I am trying to do a blog post every day. Why did I get involved in this scientific research biz anyway?

Well, in the middle of all this NIH finally puts out the money to stimulate us all. It's like the neighborhood candy factory exploded and we're all falling over each other trying to scoop up the sweets. One of the tasty treats is $200 million worth of "challenge grants," for 2-year projects of up to $1 million each. There's a long list of stuff they want done, from "Mechanisms and measurement of human thermogenesis" to "Building trust between researchers and communities through capacity building in Environmental Public Health," to "Vascular networks in engineered tissues." Our piece of the pie, if we are lucky enough to get one, will have to do with enhancing physicians' clinical skills.

Other money will pay for equipement and laboratories, bring in new fellows and expand existing projects, and pay for a lot of comparative effectivness research to make health care better and cheaper.

The official point of all this is to create jobs but it's also going to create an avalanche of scientific knowledge. It's all going to hit us at once a couple of years from now and then we'll have to digest it and apply it. A lot of it is basic science that will take a long time to pay off, some of it is clinical science that can lay the groundwork for trials that will lead to real payoffs in just a few years, some of it is translational work that has the potential to improve health care very quickly.

It's all happening in haste and maybe it isn't the best way to do things, but this is a major investment in work that can make our lives better, that nobody but the government would ever pay for. That, my friends, is socialism we can believe in.

¿Tienes preguntas? ¡Tenemos respuestas!

Yes, I certainly think that the average person is capable of understanding the basic issues underlying the need to reform our health care system. Where the dollars come from and where they go is certainly a good place to start -- one problem that Victor Fuchs mentioned which I didn't note yesterday is that people tend to think of employer provided insurance as a free lunch, without realizing that it actually reduces their wages.

But a lot of the key information does get repeated in public, constantly, by reform advocates, and it doesn't sink in. One obvious and compelling point that doesn't seem to get much traction in the public consciousness is the enormous administrative waste created by the patchwork system of private insurance. Medicare spends only 1/10th as much on adminstration. But people are so conditioned to think of government as inefficient and wasteful that this incontrovertible fact just doesn't compute -- it doesn't fit into the pre-existing frame.

The people have had sand thrown into their cognitive gears by Republican politicians and the hairhats on TV who support and enable them. While average people can certainly understand the issues, the clowns on CNN and ABC evidently cannot, and of course Fox News lies on purpose. (ABC also employed John Stoessel, who I would actually classify as the biggest liar of all.) The right has succeeded in infesting our discourse with meaningless rhetorical tropes that effectively substitute for facts and arguments. Free markets™, Big Government™, Rationing™, Socialism™, Free Choice™, and so forth, don't actually mean anything. But all you have to do is say them and people think you've successfully categorized a proposal as good or evil.

Now, as for Electronic Medical Records. There is what I will call the radical proposal, and there is the moderate proposal.

The radical proposal actually has a lot of advantages and on purely technological grounds it would provide the best infrastructure for a true health care, as opposed to disease care system. This proposal is that your medical records are not located in your doctor's office, and the hospitals and other places where you are treated. They are located on a web server in Palo Alto with backups in Tuvalu and on your own thumb drive if you wish. They belong to you. You control access. You can give the passwords to your primary care doc -- and presumably you would need to -- but you could if you wished make some parts off limits even to him or her, though I would not recommend it. You authorize your PCP to provide access as needed to other providers, to the portions of the record which are relevant for them. The payer -- probably an insurance company for now, but we can hope some day it will be otherwise -- automatically gets sent billing information, including whatever diagnostic info they require, but that's all they get. The doctor doesn't even need to send them a bill.

So, if you're on a trip to Las Vegas and a slot machine falls on you, the docs there can get access to your records and find out all about your drug allergies, medication needs, and history of pulling over slot machines onto yourself in order to generate lawsuits. Small physician practices don't need to buy any software or systems because the software resides on the server in Palo Alto. All they need is a web browser. (I recommend Firefox, and it's free.)

Nobody can write anything in the record that you don't know about, and you can write your own comments disputing anything you don't like, and/or petition to get things changed. Nobody without the passwords that you control can get access to the records, except perhaps in carefully defined emergency situations.

Sounds utopian, right? Not going to happen, at least not any time soon. And I don't have to spell out for you the huge privacy and security concerns this would raise. Perhaps they are insurmountable, perhaps not.

So what we will get instead is every institution having its own, stand-alone system. There will be various competing off-the-shelf systems, and some big academic medical centers will have proprietary systems built just for them. They may or may not be able to talk to each other and exchange information easily. That's very difficult because they won't all use the same information architecture so there will have to be all sorts of software written to convert info and move it around. And small practices will still not be able to afford it or use it efficiently if somebody else buys it for them.

So we'll see.

As for preventive medicine, yes there are some procedures, notably some immunizations, which are or can be cost saving. Having doctors counsel people about smoking cessation isn't very effective, but it doesn't cost much either so it may have a net saving. But screening procedures, prophylactic statins, stuff like that, may be cost effective, meaning that the money spent is worth it, but that's not the same as cost saving, meaning the net cost is actually less. And right now, except for the autism nuts, we have near universal immunization, so there isn't much potential left there. We'll have to look elsewhere for savings.

Victor Fuchs pretty much nails it

Victor Fuchs is a health care economist who among other distinctions wrote a famous book called Who Shall Live, which Prof. Fuchs discusses here. This week in JAMA (subscription only, but here's the opening paragraph. A big razzie to JAMA for making this closed access.) he discusses the prospects for health care reform. Since everything he says is the pretty much the same as what I have already said here in recent weeks, he must be right.

Fuchs says, first of all, that the Clinton effort failed because, while a majority supported reform of some kind, proponents never got behind a single plan but rather divided their energies, while opponents were united; and that the public never properly understood the issues. Both true. Alas, the situation is really no different today. Also true.

Given that we are in a period of economic decline, Fuchs argues that controlling costs has to be a salient goal of reform. Hey, I just said that a few days ago. Fuchs makes the following points about cost containment:

• The best shot for a quick knock down of costs is reducing administrative expenses. These are what insurance companies provide, and also come along with means tested programs. Universal coverage will pretty much pay for itself if it eliminates this waste. (However, as the wise professor is surely aware, the insurance companies aren't going to sit still for that. We will without a doubt see an encore by Harry and Louise or their modern descdendants.)


• Long term, we need an equivalent of the UK's NICE. How often have I said that? As I also noted a couple of days ago, conservatives -- pretending to stand for freedom but in fact standing for drug and medical device manufacturers who fatten their campaign coffers -- call efficient and effective medicine tyranny. This is utter nonsense, but will the people listen to Victor Fuchs, or the idiot talking heads on teevee?


• Ultimately, cost containment requires establishing global budgets (as the UK does for all health services and Canada does for hospitals, although Fuchs doesn't mention it). Yes, but just wait for the screaming and yelling about rationing. Again, will the people get this, or will the hair-hatted phonies on teevee scare them with images of sending Grandma off on an ice floe?


• More emphasis on preventive medicine may be good for our health, but it won't save money. Hey, didn't a blogger we all know just talk about that?


• Electronic Medical Records aren't cost effective for small physician practices, although they may have a payoff in large systems. See above bullet.

Fuchs also draws attention to the likelihood of adverse selection torpedoing a proposal to offer a Medicare buy-in to people age 55-64. Maybe a good point, on the other hand that would not be a problem if we had mandated coverage, because the Medicare buy-in would likely be the best deal for everyone. Of course, it would also set the insurance companies on the slippery slope to oblivion -- a good thing, but here come Harry and Louise.

So, the bottom line is, good public policy will be very tough politics. Let's not waste time in yacking about it, however. Organize!

A time to worry

I don't know about you, but reading the NYT these days is making me very, very nervous. The global economy is cratering and the situation is completely out of control, with economic stress already bleeding into social unrest in eastern Europe and very shortly, I fear, in many other places.

The situation is quite unpredictable and I'm certainly not going to tell you where I think we'll be six months from now, let alone in five years. But we all know where the last Great Depression ended up. Fortunately, here in the U.S., just as in the 1930s, we aren't seeing the far right get any traction from this and right now, it seems to be setting the stage for a somewhat more just social order in our country. Whether that political momentum will be sustained if people are hungry and cold two years from now, despite Mr. Obama's best efforts, remains to be seen, however.

For me the greater worry is in what had been viewed as the emerging democracies of Europe and even, potentially, in central Europe where we thought "never again" was a slogan we could believe in. I'm also greatly concerned about political stability in the Middle East, not because I think there is some Islamofascistocommunistoterroristo threat to the United States, but because that balck goo under the sand will pull us all into the maelstrom, and of course the people of the region could suffer even more than they have already.

Interesting times, for sure.

Knowledge is Evil

That appears to be the new conservative slogan. As I mentioned a few days ago, the economic stimulus act includes money for comparative effectiveness research -- figuring out which treatments work best, and at what cost. I also mentioned that, to the loyal opposition, learning this information is the line of march to tyranny. WaPo's Steven Pearlstein, who is not exactly Vladimir Illyich Ulyanov, follows the bouncing meme through the echo chamber from the Washington Times to Betsy McCaughey to Matt Drudge to Rush Limpbag to the WSJ.

It seems that if we actually know that one procedure or drug works better than another, or that it costs a million dollars to get a small increment of benefit, the government will deprive us of our God given right to choose the worse option, or to misallocate our resources and get less for our money. The term for this particular form of totalitarian oppression is "rationing."

Of course, the real force behind this ostensibly principled, ideological stand is the drug and medical device industry, that wants to keep selling us its most expensive products whether or not they work, or work any better than the cheap ones. But as ideology, it is probably more idiotic than most of what conservatives "think." We currently ration health care by giving it to some people and not to others. Poor people and old people, oddly enough, can have the most expensive treatments, for the most part with little restriction. Medicare currently has some standards for what it will pay for, but they are based on whether a treatment is considered experimental, not on its cost effectiveness.

The taxpayers subsidize this privilege, and you might think that would upset the Loyal Opposition,but apparently it does not. Nor are they upset by the coverage limits many middle class people face who are lucky enough to have insurance, that already deprive them of some care based solely on price, without any consideration of value. It is obvious that there is no rationality behind the demonization of rationing, it's just yelling and screaming unencumbered, as Click and Clack would have it, by the thought process.

Here's a simple thought process. We live in a world of scarcity. The bounty we enjoy is not infinite. If we spend a million dollars to extend a sick person's life by one month, that is a million dollars we do not have with which to do something else -- perhaps, for example, prevent a thousand people from getting sick in the first place, or cure them early and easily. If we are able to properly understand that choice, then and only then can we make it.

Will that make us less free? Only if you equate ignorance with freedom. And it is true -- if you are ignorant, you do not need to concern yourself with difficult choices, and you do not have to know what you are giving up. You are free to believe in falsehoods. And that is indeed the essential ideology of conservatism.

Just some thumb sucking about where medicine is today

When I first began to study medical sociology in the late 1980s medicine was just beginning to undergo a cultural shift that ultimately led to intense self-reflection.



The probability of doctors doing more good than harm didn't really become substantially positive until around mid-century, with the development of antibiotics and other important advances. Finally having a truly effective science of medicine was exciting and in some ways, too seductive, because it led to an era in which medicine was highly reductionist, breaking down the organism into separate pieces and systems and largely ignoring the psychological and social dimensions that are part of an entire human being. Hospitalized people were referred to as "the cirrhosis in room 2010" or "the COPDer in 817." Doctors and patients didn't talk with each other, the doctor just said, you have this and that, take these pills, or maybe didn't even bother to say you have this and that. There was a spate of widely read books that analyzed medicine as an instrument of social control -- Intimate Adversaries, Medical Nemesis, The Second Sickness, Disabling Professions -- and as unengaged with the humanity of patients -- The Discourse of Medicine, the Silent World of Doctors and Patients. None of these were saying that physicians were bad people or didn't want to benefit their patients, but they were saying that the culture and structure of the medical institution were in one way or another defective. Illich came at it from a religio-philosophical perspective, Waitzkin a leftist political perspective, Dundas Todd a feminist perspective, Zola the perspective of disability and the stigma of illness, Mishler and Katz a broader socio-cultural perspective, but one way or another they were all seeing the relationship as too one-sided, as imposing its own values and goals on the people who came in contact with it, to their detriment or disservice.



Fortunately, during the time I have been studying these issues there has been a large and sincere reaction to these criticisms within the profession. Academic medicine has honestly struggled to come to terms with the nature of the physician-patient relationship, the appropriate scope and boundaries of medicine, and how medicine should engage with individual patients, communities, politics and society. But we still have a way to go, both because the old culture is still somewhat entrenched and glaciers don't melt overnight, and also because we just don't know enough about how to heal people instead of livers and stomachs and immune systems. Social science is slippery, because there are too many moving parts -- every person is different even though we're also all the same. But anyway, I do believe that the practice of medicine is getting somewhat better, even as it is becoming more difficult and trying to climb uphill against growing challenges.

I'll continue to try to sort through it all here.

Astonishing breakthrough!

>MGH investigators confirm fundamental laws of physics, conservation of mass is shown to apply to the human metabolism!

Yes folks, it turns out that your body works the same way as my garage. I put in firewood, and I take firewood out and burn it. If the amount of firewood I put in is more than the amount I burn, there is more and more firewood in the garage. If the amount of firewood I burn is more than the amount I put in, there is less and less firewood.

Nineteen people with doctoral degrees have collaborated to prove that if your caloric intake is more than the calories you burn, you will get fatter, and if the amount of calories you burn is more than your caloric intake, you will get thinner. It does not matter whether the calories are in the form of carbohydrates, protein or fat, just as it does not matter whether my firewood is oak, maple or birch.

Well duhhh. The problem is, very few people are able to stick to a weight loss program. Only about 15% of the people in this study had real success, and they tended to gain weight back after a year or so. People found it easier to stick to diets that consisted of food they like to eat, but it's also a good idea to eat a healthy diet.

So that's all there is to it folks. That's all there ever was to it. That's all there ever will be. Eat what you like, just don't eat too much of it. But if you have a weight problem, it won't be easy.

Now can we stop spending money to prove stupid stuff that we already know?

Talk is cheap

Here is the section on health care from the president's speech last night, and my profound comments.

For that same reason, we must also address the crushing cost of health care. This is a cost that now causes a bankruptcy in America every thirty seconds. By the end of the year, it could cause 1.5 million Americans to lose their homes. In the last eight years, premiums have grown four times faster than wages. And in each of these years, one million more Americans have lost their health insurance. It is one of the major reasons why small businesses close their doors and corporations ship jobs overseas. And it's one of the largest and fastest-growing parts of our budget. Given these facts, we can no longer afford to put health care reform on hold.

Mad props to the prez for emphasizing cost as the key to the problem. It's not the whole problem, of course -- but we can't achieve universal coverage, high quality, and the best health outcomes if we don't wrestle the cost monster to the ground. Furthermore, this seems to be good politics -- people are worried first and foremost about the economic catastrophe and lost jobs, and by putting health care into that context he gives us the best chance to get something major done.

Already, we have done more to advance the cause of health care reform in the last thirty days than we have in the last decade. When it was days old, this Congress passed a law to provide and protect health insurance for eleven million American children whose parents work full-time.

Certainly, I was in favor of expanding S-CHIP. But, that really doesn't get us anywhere. When you get into the weeds of eligibility, coverage limits, sliding scales and what not with S-CHIP as with the rest of the patchwork of federal, state and private plans, the mind boggles and the tongue ties trying to sort out the perverse incentives. Expanding our current dysfunctional disease care system adds a small modicum of justice, but no common sense.

Our recovery plan will invest in electronic health records and new technology that will reduce errors, bring down costs, ensure privacy, and save lives.

Hoo boy is this ever a can of worms. Electronic medical records systems have a lot to be said for them, but ensuring privacy is not on that list. They create huge privacy problems. Those may be solvable but at considerable cost. EMRs can indeed reduce errors but the biggest payoff comes from a universal system in which an individual's record attaches to the individual, not a provider institution, and is accessible from everywhere, by all providers. Whether we will see anything like that in my lifetime is questionable, and it poses the greatest challenge for privacy. We may get a patchwork in which more and more physician practices and institutions, not just academic medical centers, use their own proprietary systems, but getting these to talk to each other is a nightmare. For small practices, EMRs are just not cost effective, because of the initial capital costs and learning curve, so they'll need substantial subsidies. Fully integrating behavioral health, nursing homes, specialists -- oy. Electronic order entry systems -- a subset of the whole EMR concept -- can reduce prescribing errors, but beyond that, using EMRs to reduce medical errors will require a huge investment in decision tools and has considerable potential to backfire, if we end up substituting one-size-fits all rules for sound physician judgment. Can we really save money this way? I don't think so.

It will launch a new effort to conquer a disease that has touched the life of nearly every American by seeking a cure for cancer in our time.

We now know that there is no such thing as "cancer," that is a term for innumerable different diseases characterized by abnormalities in cellular gene expression that cause abnormal tissue growth. There will never be "a" cure for cancer, though we are slowly, sloggingly making progress against various specific manifestations. Unfortunately, as we grow older, genetic abnormalities accumulate in our tissues, so even if we do manage to cure one cancer, the longer we go on living, the more likely we are to get another one. So cancer is never going to go away, and even worse, the more treatments we develop for more and more different kinds of cancer, the more money we are going to spend using them. Expanding cancer research might be something people want to do, but it sure as hell isn't going to save money.

And it makes the largest investment ever in preventive care, because that is one of the best ways to keep our people healthy and our costs under control.

Yes to proposition A -- some preventive measures are helpful in keeping people healthy -- but no to proposition B -- preventive medicine does not save money. I wrote about this recently, and there are two recent articles -- one in JAMA by SH Wolfe (Feb. 4), the other by Louise B. Rusell in Health Affairs -- but unfortunately they are both subscription only (booo!) so I can't let you read them. I mention this only so you don't have to take my word for it. Basically, with few exceptions, you have to spend money, even if it's a small amount of money, on a whole lot of people in order to prevent disease, and it usually ends up costing more than it saves. That doesn't mean it isn't worth doing -- it's often cost effective, but that doesn't mean it's cost saving, it just means we don't mind spending a few bucks to prevent disease.

Cost saving measures are available, but for the most part they aren't preventive care -- i.e., they don't happen in the doctor's office. They are public health measures, like tobacco control and promoting better diets and physical activity. But the president didn't mention the words "public health." Maybe next time.

This budget builds on these reforms. It includes an historic commitment to comprehensive health care reform - a down-payment on the principle that we must have quality, affordable health care for every American. It's a commitment that's paid for in part by efficiencies in our system that are long overdue. And it's a step we must take if we hope to bring down our deficit in the years to come. Now, there will be many different opinions and ideas about how to achieve reform, and that is why I'm bringing together businesses and workers, doctors and health care providers, Democrats and Republicans to begin work on this issue next week.

Okay, so we're going to do something, it's just that so far, we don't have even a hint of what it's going to be. I know we aren't going to get what we really need right away, so I am going to judge the proposal which emerges on one criterion and one criterion only: does it create a path toward universal, comprehensive, single payer national health care? If it makes that even harder to attain, I'm agin it. If it's neutral on that objective, it isn't worth doing. If it takes us a step closer, I'll take to the streets to support it.

I suffer no illusions that this will be an easy process. It will be hard. But I also know that nearly a century after Teddy Roosevelt first called for reform, the cost of our health care has weighed down our economy and the conscience of our nation long enough. So let there be no doubt: health care reform cannot wait, it must not wait, and it will not wait another year.

Definitely: if we're going to do something good, let's do it right now, before the wingnuts have a chance to get up off the rug. For the next few months, nobody will care how loud they scream about socialism and big government. Now's the time.

Meanwhile, here's David Leonhardt, explaining why conservatives are completely, utterly, abysmally wrong. Not that this will get through to anybody.

The annals of crime

I was reading some interviews a colleague in New York did with people with HIV and I came across something I hadn't heard about before -- crooked pharmacies that buy up antiretroviral drugs from street brokers. My friend sent me this article that lays out the whole thing. It talks about drug addicts who sell their meds, but the interviews also mention people sending money home to poor relatives in the Dominican Republic, or people who can't afford the rent.

Now for sure, one should never be surprised by the limitless prospects for human depravity. But it seems to me the police could stop this dead tomorrow if they wanted to. Do an undercover sale, bust the broker, get him to turn on the pharmacy, and Bob's your uncle. Put two or three of those pharmacists out of business and in the joint, and the rest of them will get the message right away. It's not like narcotics dealing where the market is bottomless: there couldn't be more than a couple of dozen scumbags on the buying end. Any New Yorkers want to yell and scream at the Mayor about this? Of course, it's only killing junkies and desperate poor people, so who really cares?

Molecules and substances

Ana notes, quite correctly, that trust is an important variable in speech act theory. I would go considerably further and say that the elucidation of speech acts is contingent on many dimensions of the relationship between the interlocutors, including not only trust but the rights and privileges the speaker accords the interlocutor, and presumes for himself or herself; the degree of regard or affection (or its opposite) from one to the other; the degree of intimacy and the location of boundaries; and shared history and context between the two.

Many speech acts speak for themselves, but sometimes any or all of those factors can be part of the determination of how to classify a speech act, or greatly affect its import. An example I commonly use is "It's cold in here," which looks like a statemetn of fact but is unlikely to be the kind of speech act we call a representative, because if the interlocutor is in the same room, she or he already knows the temperature. If this is said over the telephone, it might be a representative, but otherwise it could be an expressive -- e.g., a spouse complaining that the other keeps the thermostat too low, or simply a request for sympathy -- or a request to turn the thermostat up, or perhaps to cuddle. We would need to know a lot about the relationship and history of the interlocutors to accurately conclude what is intended.

Fortunately for my research team, physician-patient interactions are highly ritualized, bounded by cultural norms regarding the respective roles, and largely -- though by no means exclusively -- limited to a finite universe of subject matter. We can usually deduce the parameters of the relationship -- such as trust, regard, etc. -- from speech acts which are not problematic, and so have a basis for properly classifying those which may be more difficult. To the extent that norms and conventional boundaries are violated, or the relationship has a large load of history or unusual degrees of personal feeling, we can observe that from the data.

However, I don't know that we can always do this and we may be fooling ourselves a bit. In spite of the vast amount of research that has been done on physician-patient communication, there has been very little which concerns how doctors and patients view their ongoing relationships and how these develop and change over time, as opposed to breaking down invidivual encounters. Of course, encounters with specialists or in urgent care are often one-time or few time events. But other Dr-Pt relationships are extensive and intimate, within certain boundaries and in patterned ways. This is something I would like to understand much better.

Shovel-ready science

I just got off of a conference call with the acting NIH director, wherein he briefed what I presume were 6 gazillion panting scientists about what's going to happen with the $10.4 billion NIH got from the stimulus bill.

NIH will end up with about $800 million for comparative effectiveness research, half of it looped through AHRQ for some reason, which is actually a fulfillment of an Obama campaign promise, as you may recall -- and, bizarrely, a bete noir with a large segment of the right that actually thinks it's a violation of your freedom for you and your doctor to know which treatments work better. Weird, bizarre, and very very strange.

Other money goes for construction programs, like building and fixing up labs -- $1 billion of it to external institutions, i.e. mostly colleges and universities. Maybe Harvard can finish that new stem cell research center after all! (Those of you who don't live in the Athens of America probably don't know that they had to put it on hold because they lost all their money at the dog track.)

The part I really care about -- $8.2 billion -- is to fund actual scientific research. Yay! The director will get an $800 million slush fund to do with as he pleases, it seems. Of the remaining $7.4 billion (believe me, it goes fast when you start spreading it around), it must all be used for projects that will be completed within 2 years and won't create out-year commitments. That's a weird criterion for research, believe me. No large-scale trials or epidemiological studies will be funded, we've all got to scramble to think up stuff we can do fast.

Some of it will go to existing applications that were approved as scientifically meritorious but didn't make the pay line. Rats, I don't have anything in.

Some of it will go as supplements to current projects. That we can do. One idea is to create more post-doctoral fellowships for out-of-work Ph.D.s That will create some job openings on the back end for cab drivers.

Some of it will be for new programs, in what are called NIH Challenge Grants. The solicitations will be out soon.

This is all great -- we're all feeling like kids in the candy store right now -- but it is also quite bizarre. There will be this 2-year torrent of money and then slam, the spigot will be off. Will all those nerds be back in the cab in 2011? Just wondering . . .

Help me out here . . .

I'm having a bit of an ethical dilemma, which is causing me writer's block regarding a proposal. Does it matter why people choose to accept a physician's recommendation for treatment? In particular, is it somehow just wrong if they have misconceptions about their disease or the way the treatment works, don't accurately understand all of the risks or how things might go wrong, or are basing their decision on factors that probably ought to be irrelevant? In other words, how strong should be our commitment to the official doctrine of informed consent?

Here's some background. I interviewed a whole lot of people with HIV about their treatment decision making, i.e. whether or not to take antiretroviral drugs (ARVs). A few of them said they just did whatever their doctor told them to do, and they really didn't want to be bothered to learn a whole lot of scientific stuff about HIV and ARVs. That seems fine to me, if that's what they want, I'm not going to tell them they are supposed to be better informed.

Most of them, however, said that they based their decision on information. They often said they attended educational workshops, read magazines, talked with their doctors and health educators, used the Internet, etc., and came to an informed decision. But then as I continued to interview them it turned out that they didn't actually know, well, much of anything. They often didn't even know what classes of drugs they were taking. (At the time, there were three major kinds of ARVs, called nucleoside analogue reverse transcriptase inhibitors, non-nucleoside analogue yadda yadda yaddas, and protease inhibitors. The first two block the action of an enzyme that writes the viral genome into the host cell's DNA, but in different ways; and the latter blocks an enzyme that cuts the long polypeptide products of the viral genome into their constituent proteins.) They didn't know anything about the possible side effects of the drugs, except for side effects they had actually experienced; they often thought that drug resistance was a change in their bodies, rather than an adaptation by the virus; and some of them had no concept of viral replication. One woman said that viral load was a measure of how many babies the mother virus was having.

Now, is this wrong, as long as they were taking the meds and keeping themselves comparatively healthy? Sometimes their doctors had talked with them in metaphoric terms, such as virions being "enemy soldiers" and needing to keep our soldiers -- the ARVs -- in the field so they couldn't take over. That's complete bullshit, of course, but it seemed to work. Of course, it may turn out that people who have a better understanding adhere better in the long run and otherwise do stuff we like such as not risking transmitting the virus or becoming reinfected -- which is bad because they might acquire a drug resistant strain. But if I can't prove that, should anybody care? Scientifically accurate knowledge was available to these folks, but evidently not in a form they could understand, or maybe they didn't really make the effort but felt satisfied with whatever ideas did get into their heads.

Is that malum in se? Should I be given taxpayer money to figure out how common it is, and how to explain things to people better? Or would you rather I be stimulated in some other way, as long as the people are taking their pills?

Flacked!

Tobacco Free Kids wants me to tout their new report on tobacco industry marketing to women and girls. Done. (Warning: Gigantic PDF. You might just want to go to the TFK home page to get the short version.)

There. I guess I'm easy.

They're still around. And they're still evil.

FDA = Feckless Drug Administration

The Office of Inspector General of HHS recently released a report on the FDA's oversight concerning financial conflicts of interest on the part of investigators involved in new drug applications. (H/T to Bridget Kuehn, the JAMA public affairs reporter, for bringing this to attention.) You may be vaguely aware that when drug companies submit studies to support approval of new drugs, they are supposed to tell the FDA when the researchers were in their pay or stand to benefit from approval. Yeah, right.

42% of marketing applications were missing financial disclosures - sometimes because they were just missing, and sometimes because the sponsors claimed a "due dilligence" exemption. That means they called the researchers twice and sent them two letters, and didn't get an answer, therefore they don't have to provide any disclosure. Uh, since they're the ones who paid the people in the first place, they probably already know. Duhh. But if you don't want to disclose, all you have to do is ignore the requirement, and you're exempt! Gee, do you think that's too easy?

For some reason, the companies and investigators do sometimes disclose financial conflicts of interest, but most of the time, the FDA didn't do anything about it. Sometimes the sponsors submitted information to indicate that they had tried to minimize resulting bias, but the FDA doesn't try to assess the validity of such claims. The bottom line is that although independent research finds that about 25% of clinical trials investigators have financial conflicts of interest, only 1% of investigators listed in approved marketing applications include a disclosure. Not only that, the FDA doesn't even require a complete list of investigators in the first place.

That the drug approval process is deeply corrupt is not news, but this crosses the line from tragedy to farce. Maybe we should all just try to stick to aspirin for the time being.

What's next? A cure for baldness?

After my recent rant about the hopeless state of chronic tendinitis, I have to point out that it appears doctors may be onto a possible cure. What's slightly weird about this, however, is that the story appears on the NYT's sports page, even though they happen to have a perfectly good health/science page on the same day.

In a nutshell, the idea is to bombard the afflicted tendon with the person's own platelets. Simple enough. However, we haven't had any corporations funding the big clinical trial for this, instead we have professional sports team docs trying it out on their multi-million dollar charges. Presumably that's because there aren't big bucks in it for Pfizer. Come to think of it it's not clear that there's anything here that's patentable.

This is rather reminiscent of how a lot of important technology doesn't get developed until somebody decides it would be useful for war fighting. Antibiotics, your Intertubes, the Global Positioning System, all came out of military research. Will platelet-rich plasma therapy make it from the NFL to poor saps like me? We'll just have to wait and see. But one more reason why we need to get basic clinical science research out of the private sector and organize it in the public interest.

The stupid designer

Richard Dawkins, of all people, writing in Free Inquiry (Feb/March 2009), summarizes Darwin's Big Idea as:

Given sufficient time, the non-random survival of hereditary entities (which occasionally miscopy) will generate complexity, diversity, beauty, and an illusion of design so persuasive that it is almost impossible to distinguish from deliberate intelligent design.

Ahh, no professor. You have had an astonishing, and quite uncharacteristic brain fart. It is, as you well know, quite easy to distinguish the products of evolution from deliberate intelligent design.

Consider one familiar species, Homo sapiens. Among the innumerable design flaws in this generally splendid product are:

• The baby's head is too big for the birth canal. Prior to modern obstetrics, it was all too common for women to die in child birth.


• There is a vestigial tail, that serves no purpose except to produce excruciating pain if you happen to fall on it -- and it is located precisely in a place where that is likely to happen -- but only to a creature that walks upright on its hind legs.


• There is a narrow pouch extending from the entrance to the colon, which serves no evident purpose except to become infected. Prior to modern surgery, infection and perforation of the vermiform appendix was a frequent cause of death.


• The spine has a structurally defective curvature at the bottom, causing no end of unpleasantness.


• The respiratory and alimentary entrances to the body go through a common portal, leading to frequent accidents in which ingested material gets stuck in the trachea, resulting all too often in untimely death.

I could go on and on, but you get the idea. With a tweak here and there, we could do much better. Evolution, however, had to work with what it had, which was mammals with small heads, that walked on four legs, that evidently had some use for an appendix and a tail, and which didn't talk so that the trachea could be more effectively closed off during swallowing.

Understanding human evolution is very helpful for public health and medicine. For example, it provides insight into the kind of diet and lifestyle which is most likely to prolong good health and vigor, and into the immune system with all the good it does, and the harm as well when it turns against us in Type 1 diabetes, multiple sclerosis, rheumatoid arthritis, etc.

One of the great joys of atheism is that we do not have to contend with the problem of evil. This is the ruination of every theologian, although they swaddle it in sufficient sophistry to stifle its intolerable screams. If God made everything and saw that it was good, why did he make our bad backs and our deaths in childbirth and our treacherous autoimmunities? What a jerk! If he was smart enough to design smallpox, we were even smarter to eradicate it.

The fact is, we do have all sorts of flaws, some of which we're learning how to fix, at least partially, but others of which we still have to live with. That can be a drag, but at least now we know we don't have to take it personally. No intelligence did this to us on purpose, it just happened. And fortunately, unlike the designer, we actually are intelligent, so we can do something about it. Isn't that good news?

Evolution in the News

Yes, Darwin Day is over, but since today is - well you know, a certain date and day of the week - I'll pretend it's still yesterday.

Two interesting news stories today, both with an evolutionary theme. Nicolas Wade reports on progress in reconstructing the genome of Neanderthals. There are some misconceptions about these creatures -- they are not our ancestors, or a more primitive version of Homo sapiens, but rather a closely related species that diverged from our direct line. They lived in Europe, and went extinct about 30,000 years ago after Homo sapiens arrived in the area.

It is possible, sadly, that we outcompeted them or even massacred them. Neanderthals had a static culture which was not as technologically sophisticated as that of their contemporary H sapiens, so that could certainly have been the story. People have speculated whether the species interbred and the conclusion from this work so far is, apparently not. This is all very interesting and will no doubt ultimately yield further insights into human evolution but I just want to comment on a truly weird element of this story, which is that some scientists are speculating about the possibility of resurrecting the Neanderthals.

The idea would be to construct a complete Neanderthal genome by making the appropriate modifications in H sapiens genes, inserting the chromosomes into a chimpanzee ovum and then implanting the embryo in a chimpanzee mother, on the grounds that using a human ovum and surrogate mother creates greater ethical problems. This is actually not possible using current technology, but if Bill Gates wanted to fund a project, it could probably be accomplished. I certainly doubt that Bill would be interested, but there are plenty of wacko rich people out there so you never know.

Whether or not you think the whole idea is unethical, or just grotesque, as a thought experiment it is definitely entertaining. For starters, if someone were to do it, would we owe the Neanderthals the same respect and rights we grant to H sapiens? Okay then, why don't we give the same respect to chimps? They're only slightly more distantly related. We don't know whether Neanderthals could talk, but is that the criterion? African gray parrots can talk, and they can learn to communicate with humans using syntax.

The other major genetic breakthrough of the day, also reported by Mr. Wade, is the sequencing of the genome of all 99 strains of the cold virus. There's good news and bad news. You want the good news first? Okay, there is a region which has been strongly conserved by evolution, in other words all the strains have this in common. Evidently it's necessary for the virus to be successful. That means it could be a target for an antiretroviral drug that would be effective against all cold viruses.

The bad news? No drug company is likely to undertake an effort to develop such a drug. Since colds are just a nuisance for most people, we just wouldn't pay big bucks for it, number one; and number two, it would only take a few doses at most to do the job, so the market wouldn't be large enough for them to make money charging low prices. They're much more interested in drugs that don't cure people, that you need to keep taking forever; or drugs for life threatening conditions that they can charge tens of thousands of dollars for, e.g. cancer chemotherapy.

That does not mean that there wouldn't be a net benefit to society from development of a cure for the common cold, however. So here's one more reason why we need to completely change the drug development process. New drug development should be publicly funded, based on calculations about what's best for the public. Then the government can license the meds to manufacturers. How's that for a plan?

¡Gracias a Dios!

A special court ruled Thursday that parents of autistic children are not entitled to compensation in their contention that certain vaccines caused autism in their children. "I must decide this case not on sentiment, but by analyzing the evidence," one of the "special masters" hearing the case said in denying the families' claims.

This largely disposes of the problem from a legal standpoint. These families had claimed that MMR vaccine and thimerosal combined caused their children's autism; other claims are based on one or the other agent alone, and logically, if the court ruled against these families, the remaining cases are hopeless.

I'm afraid, Mr. Robert F. Kennedy Junior, that you're going to have to find another class action lawsuit to pursue. Not that you aren't wealthy enough already.

As for these families who struggle with their children's autism, of course they need more support and resources. If we had a sufficiently just society in the first place, people wouldn't have to pursue frivolous lawsuits in order to try to get the help they need.

Let Freedumb Ring

Darwin Day is a day of celebration, but here in the U.S. it's also a day of national shame. PZ Myers disparaged this graphic from The Economist as being plagiarized, but regardless, it tells the story: "In 2008 14% of people [Americans] polled by Gallup agreed that “man evolved over millions of years”, up from 9% in 1982." The graphic actually shows more like 35% of Americans agreeing that the theory of evolution is "true," but it evidently reflects a different wording of the question.

In any event, either way we're barely ahead of Turkey and absolutely last among the wealthy and well-educated countries in the percentage of people who accept the theory of evolution -- and not just by a little bit, either. The country just ahead of us is Greece, and there a majority believe in the obvious truth. From there the majorities become overwhelming.

We're fortunate to have people like PZ who are willing to spend a good part of their days arguing with idiots, but it doesn't do much good. This is clearly not a matter of evidence and logic, or it would be long over. So we need to ask why, in the United States of all places, so many people cling so fiercely to long discredited myths and fables. I have mentioned some possible psychological reasons -- that the idea that we just sort of happened, and there isn't any higher purpose to it all, is somehow unsatisfying to people. But of course people's psychology is the same everywhere, so the discrepancy has to do with our culture.

And that seems paradoxical since we're famous for inventiveness, figuring stuff out, exploration and discovery. For that matter we have the world's largest and most fruitful scientific enterprise, universal literacy and a high level of formal education. Just what is going on here?

Of course the earliest European settlers included a large percentage of religious fanatics, but they were not a dominant influence by the time of the founding of the U.S. The important political leaders in the late 18th Century, those known as the Founding Father, were, in fact, strongly influenced by the Enlightenment and were probably too secular in their outlook to successfully run for high office today. In other words we somehow regressed.

I think the main issue is one of identity. Christian fundamentalism and rejection of science are a way for people to assert a regional and cultural identity -- and indeed this does correlate with the Confederacy, and former frontier states where people may have felt that people in the more developed northeast looked down on them. Secularism and humanism are a threat, not so much to people's existential equanimity, as to their pride of heritage. The divide almost rises to the level of separate ethnicity, we can almost be seen as two nations.

So the coincidence that today is the bicentennial of both Darwin and Lincoln has got to be particularly galling to the losers of the War of Northern Aggression. If my analysis is correct, then we need to try a different approach. Not that I'm entirely sure what that might be.

I control the top line . . .

So I might as well use it. Yes Rachel, I do support space exploration, although for the time being I favor only robotic exploration. The cost is trivial compared to the money we squander on war and preparation for war; and the rewards it brings in understanding our world are immeasurable. Ultimately, once we have gotten our problems here on earth under control, then indeed I think it will be a profoundly rewarding new stage in our development as a species for us to establish ourselves beyond the home planet. That may have to wait until after our own lifetimes, but I kind of hope to live to see it.

(And I hope you'll start up your own blog, since you now have an account.)

As for Mr. Hardy, I'm sure he is very committed to his ideas so I don't expect to dissuade him. Nevertheless I think his comments are interesting for a number of reasons which I will, for now, allow to speak for themselves. Based on my cursory look at Mr. Hardy's web site, it appears he is a proponent of what we call a "steady state" theory of the universe, which maintains that the universe has always existed in essentially its present form. This was quite the controversy in my youth, but ultimately the so-called Big Bang theory, which I prefer to call Initial Singularity, won out.

Mr. Hardy is quite correct that as we look out into space, we look back into time, and therefore the galaxies we see in the distance are long gone from their apparent locations. Cosmologists obviously understand this, in fact its an essential component of their understanding, so I'm not sure what the intention is in raising it.

As for the other assertion, that according to the consensus theory the light of distant galaxies must shine out beyond the boundaries of the universe into nothing, that is actually a common misconception. Modern cosmology is difficult to understand, but I tried to address this very confusion with the balloon analogy. The universe may be finite, but it has no boundary. It is fundamentally wrong to think that we are somewhere near the center and so distant objects must therefore be near the edge. There isn't any edge, except in time, i.e. the beginning, the IS. And there is no center either. As I said, all observers perceive themselves as being at the center, including those on the edge of our observable universe, which perceive us as being on the edge. Again, think of the two dimensional creatures on the balloon. They see a circular universe, but they are really on a sphere. Within their two dimensional world, the sphere has no boundary, you just go around and around.

So, one reason that people deny some scientific findings is that they are simply counterintuitive. Evolution has equipped us with some intuitive physics which work well for hunting and gathering on the African savannah but which turn out not to be quite accurate when we do sophisticated experiments or study conditions normally inaccessible to our experience, such as very small, very large, very hot, very cold, etc. It may require some long, deep study to understand how scientists arrive at conclusions which they then present to the general public in simplified or even somewhat allegorical form. It does require a certain trust of the whole enterprise to be persuaded, and I agree that is trust the scientific establishment does not earn 100% of the time. This is why the democratization of science is so important.

More of that deep philosophy

Darwin died before we discovered the universe. He figured out the basic idea of how life on earth developed. He knew that the earth was very old by human standards -- far, far older than the biblical story would suggest -- and that life had existed for a very long time before humans came along. That knowledge alone radically altered our place in the world, but it took 20th Century cosmology to completely destroy any idea of the centrality of humanity.

Creationists, obviously, don't just reject Darwin, they reject cosmology as well. I haven't noticed them objecting to the theory that there are billions and billions (and yes, Carl Sagan did to say that) of stars in the galaxy (about 200 billion to be exact) and billions and billions of galaxies in the observable universe, because, well, they can't. Look through the telescope! Those facts alone would seem very much to undermine the belief that humans are important to the creator, but the fundamentalists seem willing to ignore that problem and limit their objections to the claim that the universe is billions of years old, and much older than the earth.

Here is some of what I understand about the cosmologists' universe. By the "universe" they usually mean the observable universe, but there are some vexing metaphysical problems underlying that usage. It is certain that in some sense, the observable universe is not everything that exists, but what does it mean to say that something exists if it can never interact with us in any way?

Here's how we know this: we can only see a radius of a little over 13 billion light years, the distance light has traveled since the origin of our universe in what is misleadingly called the Big Bang. Actually it should be called the Initial Singularity, the IS, but Sky and Telescope wouldn't accept my suggestion for some reason. The expansion of the universe is not limited by the speed of light, because it isn't "going" anywhere. So at the edge of the observable universe, galaxies are actually falling over the horizon -- disappearing from our universe.

From their point of view, it is we who disappear. Every observer in the universe, no matter where they are located, perceives their own location as the center. Got that? It works because the universe is not a sphere, it is a hypersphere. Think of a two dimensional universe consisting of a spherical surface, expanding like a balloon. The galaxies are dots on the balloon. Light rays that appear straight to the flatlanders are actually great circles bending across the surface. So, no matter where your dot is, as you look out you see a circular area, with your dot at the center. We cannot visualize hyperspace, but it works the same way.

So the universe could be infinite in volume. Or maybe not. There is no way to know. But it is finite in time. Nevertheless, from the standpoint of a human lifetime, that is an enormously large finitude. Was the universe created by some sort of intelligence? You know what, it might have been. It could even have been a committee, or a corporation, or a child playing with a toy science kit, or perhaps it was some sort of industrial accident, or a natural disaster, in a predecessor universe. We have absolutely no idea. Maybe we'll get a better idea some day, maybe not.

But whatever the explanation for the creation, it had nothing, and I mean zip, zilch, nada, bupkus, zero, to do with us. We are a minor contaminant in a microscopic layer of slime on a grain of dust on a tiny island in a vast ocean. Less than that. Believe me, that ocean was not created for the sake of that slime.

Is that depressing? Is it terrifying? Not to me. If we are nothing, that means we have no place to go but up. We can become something. We already have, in a way -- we're the creatures whose minds can ecompass the immensity of the universe. Now let's get out there and explore it. What could possibly be more meaningful than that?

Economics 102

NYT's Michael Moss runs down peanut buttergate for you, and yeah, it's pretty gross. Peanut Corporation of America (that's the true grandiose name of this flea-bitten, fly-by-night sleazedog operation) knew it was shipping out contaminated product, but they weren't required to notify Georgia state inspectors or the FDA when they got positive tests for salmonella. Georgia has 60 inspectors for 16,000 food handling businesses, and the FDA doesn't inspect plants in Georgia at all -- it has delegated the task to Georgia, as it has to most states. And you know how they feel about Big Government down in Georgia.

Now here is yet one more reason -- an obvious, trivial reason -- why the Free Market™ ideology taught in Economics 101 is complete nonsense. Actually there are two or three reasons all wrapped up in this single example.

• Reason One: Consumers can't make "rational choices" or "maximize their utility" if they don't know what they are buying. You have no way of knowing whether the food somebody sold you is contaminated with salmonella unless somebody you know you can trust tells you so. And the only way you know you can trust said somebody is if they're working for you, and the only way that can happen in this situation is if a) said somebody is the government and b) the government agency really does work for you and not the businesses it regulates.


• Reason Two: There is a whole chain of purchasing from farm field to your oral cavity. That means that the potential social costs and benefits of all of those transactions along the way are not captured by the transaction because that salmonella is going to land in your blood stream, not the blood stream of the buyer. As a matter of fact, the penultimate customer may be a school or hospital cafeteria, for example, and the person who gets sickened or killed by the food may have nothing directly to do with any transaction pertaining to that item at all. This is called "externality," which economists treat as an exception but which is actually ubiquitous and is a feature -- probably the dominant feature -- of every economic transaction, without meaningful exceptions.


• Reason Three: The market provides no accountability for fraud or negligence in most cases. The only reason we know where this particular salmonella outbreak came from is because the government -- in this case the CDC -- investigated, and they were lucky enough to be able to figure out the source. But in other cases, it might be impossible. No government, no accountability.

So, what do we have to do in order to insure a safe food supply? It turns out it's not just the Chinese, it's us. We have to increase government spending on food safety. We have to effectively regulate businesses. In order to do those things, we need a functional democracy that works for people, not for economic elites who want to take advantage of us. We need to expunge shallow libertarianism, free market fundamentalism, and as a matter of fact the very term "free market," which is a fraud, from our political discourse.

Sermonette

As I promised a few days back, my own contribution to the celebration of Darwin's birthday will consist of some reflections on how the world we have discovered with our senses and our reason is meaningful for us, and hospitable to our happiness. People who reject science in the name of religion say that Darwin's world has no moral foundation and leaves us stranded without purpose. That is simply a failure of understanding and imagination.

In fact, the universe I know, as an atheist and a humanist, is far more grand and wondrous than the cramped, impoverished world of creationists. Best of all, it opens up far more vast vistas of meaning, and infinitely greater prospects of purpose. Creationists find meaning only in a ghost, an invisible, incomprehensible entity that exists outside of the world. For me, meaning is right here, inside me and all my friends and all the world's people. What could possibly be more exciting and rewarding than to be like Copernicus and Newton and Darwin, and discover the universe for ourselves? How wondrous we find ourselves, to know that we arose from the workings of physics and chemistry and probability, acting over billions of years, and here we are with the astonishing capacity to understand, to experience, to choose.

Morality does not come from God, after all. It is part of our nature. It arose because we succeeded in the world as social animals, so our mutual regard and love are part of how we work, part of what evolution made us.

So here we are. We got here by chance, we won the lottery. Hooray! We can look around, discover where we are, become whatever we can accomplish. We are not limited by what has been given to us, we are not beholden to any creator, we are not commanded by any law but our own. How joyous that should make us! We are free.

In coming days, I will say more about how I believe we should use our freedom.

Oh yeah, the rest of the world . . .

It's too soon to tell, of course, what regime change in the United States will mean for the less developed countries. We've been pretty much obssessed with our own problems lately, and I would expect that foreign aid will be an even tougher sell than usual. Still, if we were wise enough to recognize that cutting taxes on the wealthy and deregulating financial markets is not the path to prosperity after all, and that war is not peace and slavery may not be freedom, perhaps we'll be wise enough to realize as well that we have to live on this planet and that what happens in those remote places matters to us after all.

During the campaign, Barack Obama advocated increasing funding for the President's Emergency Plan for AIDS relief by $1 billion over five years, and doubling overall foreign assistance -- to $50 billion a year -- over time. He also called for cancelling the foreign debt of the world's poorest countries. Under the current circumstances, I would be surprised to see all of this happen, although the latter is certainly a possibility. You can't get blood out of a stone anyway. But Obama has already used his executive authority to get some of the ideologically driven nonsense out of the aid we already give -- specifically by ending the ban on funding organizations that offer abortion-related counseling and referrals. Presumably the ban on needle exchanges programs and the favoring of "abstinence only" sexuality education will also go overboard.

We'll be keeping a close eye on policies toward global relief and development. I've written before about the controversies over HIV and other disease-specific programs, vs. investing in broad health care and public health infrastructure. In the long run, what we do to develop renewable energy technology and reduce use of fossil fuels here will also have a big impact on the world's poor, as will global trade policy -- and that includes our agricultural policy which is terrible not only for small American farmers and American consumers, but for poor farmers around the world as well. I'm not counting on the Democratic Party to fix that last one, however, not while the midwest is a major political battleground and Archer-Daniels-Midland and Monsanto are big political players. But we're watching them anyway.

Patriotic Song

I'd rather forget him entirely, but as the famous political philospher Juju Santeria once said, Those who fail to ridicule the past are doomed to regurgitate it, or something.

The tune should be obvious.

Dear Chimpy ‘tis at you,
I hereby throw my shoe,
It’s thee I dis.
You’re the election thief,
The idiot in chief
You’ve screwed us up beyond belief
On thee I pis.[1]

You claimed to speak for God
While on the laws you trod,
You hypocrite.
You lie just like the sod
Your syntax it is odd
Your cowboy accent is a fraud
You’re an upper class twit.

At oversight you sneezed,
Your greedy friends to please,
And the economy crashed.
Iraqis you did croak,
You’ve left our grandkids broke,
You treated war like one big joke
At the journalists’ bash.

You tortured prisoners
Appointed Hizzoners [2]
Far right extreme.
For the polluted air,
Taxes that are unfair,
And inept cronies everywhere,
God save the Queen.[3]

Your place in history
Will be no mystery:
You are the worst.
Upon your neck we’d hope
To find your head but nope,
You’d nee -eed a-a proctoscope[4]
Of fools you’re first.

[1] Unless of course you happen to be on fire.
[2] Okay, it's a bit of a stretch, but rather clever in a groan-inducing way, don't you think?
[3] Whoops, wrong song! heh heh.
[4] Sorry about that.

Preventing our way out of bankruptcy?

Health care reform has been pushed to the back of the room while all wait to get stimulated, but it's still on the program here. As I have mentioned from time to time, there is no serious cost containment in any of the proposals coming from the Obama administration or congress right now. The president (and it is at least a relief to be able to type that word without pain) has said that more emphasis on prevention can save health care spending, but is that really true?

Steven Woolf in the new JAMA reviews the issue. Unfortunately it's subscription only, but I largely agree with him and I can summarize it more quickly for you anyway.

If we spend money on preventing illness, we might end up saving money on medical treatment down the road, but is that really the only reason to do it? In fact, while it is unquestionably true that if fewer people smoked, more people ate a healthy diet and were physically active, the air was cleaner, etc., we would spend less money treating cancer, heart disease, and diabetes. However, it does not follow that every dollar spent to achieve those ends will save more than a dollar plus interest, since we're looking toward the future, in eventual health care spending. Interventions directed at a large population will be successful with only a percentage of individuals, and so the cost-benefit calculus is uncertain. The fact is there are few interventions that really save money in the end.

When it comes to preventive medical services, per se, there are really very few interventions that ultimately save money, and a lot of them, such as universal childhood immunization, are largely in place. There probably isn't a lot of room left to save money by investing in prevention -- certainly not enough to reverse or substantially slow the growth in health care spending.

However, that is not an argument for not doing more prevention. We don't spend money in order to save money, we spend money in order to get stuff that's worth it. And better health and longer life are worth spending money on. The issue is not just investing more in prevention -- it's allocating health care spending efficiently. As Woolf points out, insurers pay for many services that cost more than $100,000 per quality adjusted life year (QALY -- I've criticized the concept previously but we need some way of comparing benefits of various interventions); but there are services that cost much less that aren't universally utilized. For example, colonoscopic screening for cancer is estimated to cost less than $25,000 per QALY, but most people don't get it. Other preventive services cost even less. However, they still have a net positive cost.

Therefore, if we spend more on screening and prevention, in general we will end up spending more in total, not saving money, although we will prevent suffering and disability and extend lives. If we want to actually save money, we have to spend less on less cost effective services, and reallocate the spending to others that, while they still have a net positive cost, give us more for our money.

This means -- drum roll please -- we must have rationing. The so-called Free Market™ does not allocate health care resources in this way, and generates almost no public health resources at all, because they are public goods. The best way to achieve the rationing we need, from which we will all benefit (and I'm not one who believes that a terminal cancer patient actually benefits from $150,000 worth of chemotherapy that yields three months of sick and suffering life) is to have universal, comprehensive, single payer national health care. Yeah, socialism. There, I said it. When it comes to health care, capitalism is what ails us.

Power Play

Okay, so I started to write the book, and much to my surprise, it turns out to be about conflict in a setting of unequal power. Here are some of the distinctive features of the physician role vis a vis the patient role:

• Physicians want to invade our privacy, and they have cultural authority and license to do so in ways that just about nobody else does.


• Physicians have license to invade our bodies, to see us naked, to touch and enter our most intimate orifices, and even to cut us open and dismember us. No-one else in the world has such license.


• Physicians judge our behavior.


• Physicians try to control our behavior.


• Physicians control the prescription pad; they alone decide whether we have access to most medications.


• Physicians may have power over our very sustenance, as by certifying for disability or worker's compensation.


• Physicians may control whether our insurance plans will pay for us to see specialists.


• Physicians can ask a judge to have us imprisoned in a mental hospital, and will almost always get their way.

Under the circumstances, it is a considerable credit to the profession that most people say they like their doctors, and that we generally willingly submit to the indignities and infantilization inherent in medical care. We place immense responsibility on physicians not to abuse these privileges, and most of them do their best to earn our trust. Nevertheless, it is very difficult, when handed such direct power over people, always to wield it harmlessly, let alone for the maximum good. However benign and cooperative the relationship appears on the surface, there is always a power struggle going on underneath. Medical ethicists talk about the physician's obligation to be beneficent, to grant patients autonomy, and to respect persons. Yet those principles are often in conflict with each other, and with the physicians' own experience of being locked in combat with disease -- a combat in which the person who has the disease, or the risk for disease, is an uncertain ally or even an enemy.

So Collaboration, Conflict and Power, with a suitable subtitle. How's that?

Are you illiterate?

So, NIH is putting a lot of vigorish out on the street, some of which I may just try to collect, to study what they call Health Literacy, by which they mean "the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions." According to NIH, not having enough of this stuff is a serious problem, apparently affecting 90 million adults in the U.S. -- This according to the program announcement I'm reading now. For those of you who have never checked out how the NIH gives away money, you might want to check it out, these are your tax dollars at work.

I think this particular cause is a good one -- we do need to figure out how to help people better understand information that affects their health, including being able to come to the right choices about treatment for them, as individuals. But I do have a problem with the "Health Literacy" frame, which is that it locates the problem in the average patient or citizen who is presumably too dull or ignorant to figure out which end of the fork to hold. While that description does indeed apply to Don McLeroy, D.M.D., I think for most people who don't necessarily grok all the stuff their doctor is thinking when he refers them for a throgsneckbridgectomy, the locus of the difficulty lies elsewhere.

Figuring out how to communicate technical and specialized information effectively to people who might want to know it because of its relevance to their own health is important, and I certainly want people to do a better job at that. But this is really a two way street. The kinds of information that matter in providing health care, treatment decision making, and managing disease aren't just the stuff the doctor learned in medical school that is just way too complicated for you. It includes a lot of stuff you know or care about that the doctor doesn't know and doesn't know enough to care about. The goal should not be to get you to do what the doctor wants you to do, but you're too stupid to know is good for you. The problem is how everybody can work together to come to some sort of a consensus about what is good for you, or to agree to disagree in an open and honest way.

I'm sorry that this is all a bit abstract, but I'm too busy today to anything more than bloviate. Still, if anyone wants to add some concrete examples that seem to be in order I'll be delighted to hear them.

Idiocracy

Ed Doerr, in Free Inquiry magazine, quotes Don McLeroy, creationist and chair of the Texas State Board of Education:

If science is limited only to natural explanations but some natural phenomena are actually the result of supernatural causes then science would never be able to discover the truth - not a very good position for science. Defining science to allow for this possibility is just common sense. . . . Then the supernaturalist will be just as free as the naturalist to make testable explanations of natural phenomena.

Now you see, what we have in this country is a political discourse which is not built around competing interests, or values, or intellectually respectable analyses of the state of affairs. Of course those exist and they are what actually underlies much of politics. But they are hidden behind arguments between people who use information and reason to reach conclusions; and people who are total idiots. Bill O'Reilly, Rush Limbaugh, Glenn Beck and Samuel J. Wurzelbacher flaunt ignorance and bigotry as virtues. Among Republicans, it counts as evidence against a conclusion that it is held by smart, well educated people.

As for Doctor (yep, he's a dentist) McLeroy, he undertakes to lecture the scientific establishment on the correct way to undertake science when he clearly hasn't got the slightest idea of what science is or which end of his alimentary canal is which. As a scientist, I hereby invite him to propose any testable explanation he likes for natural phenomena. Problem solved.

Hard Times All Over

Brandeis University, which bestowed a degree upon me, may be on the verge of making an even bigger mistake. Colleges everywhere have seen their endowments hammered, and that is creating some real pain in academic programs and other areas. Brandeis has bigger problems tham most, however, in part because it is a relatively young institution that didn't have all that big of an endowment in the first place, but also because many of its major donors had entrusted their money to Bernie.

I don't know how much it's been in the news nationally, but around here it's a very big deal that the trustees, at the urging of president Jehuda Reinharz, voted to sell off the collection of the university's Rose Art Museum. They think it might be worth $300 million, which would more or less replace the lost funds, but as you can well imagine this is not sitting well with anyone. Meanwhile, the Carl and Ruth Shapiro Foundation, an important benefactor of many cultural, charitable and health care institutions in the Boston area, has cancelled all new grant making for the year because Bernie stole half of their endowment.

The Madoff victims are particularly poignant, and it is particularly obvious that they were robbed, however the truth is that we've all been robbed, mostly by people who aren't going to jail and who in fact are walking away with the loot. All of the gains in the financial markets for several years now have been illusory, the product of pretending that borrowed money was income -- in other words the whole thing was a giant Ponzi scheme. One of the saddest consequences of all this is that it will just increase inequality. It will make higher education harder to afford, it will cause tens of millions of people to lose their health care and quite possibly spiral down into disability and life long poverty, it will make poor kids poorer and send middle class families into poverty. The charitable institutions and state agencies that provide a safety net will be collapsing just as they are most needed.

President Obama has branded his legislation as an economic stimulus, but it's more than that. It's a two-minute drill to save our asses and give us a chance to play again next Sunday. It is really frosting my pumpkin that the punditocracy is saying the Democrats will be held accountable for "failure" if we don't have a strong recovery by 2010. Believe me, if we just manage to hang on to social decency through 2010, it will have been a success.

Changes

Note the new e-mail address in the sidebar, which is now preferred. (The old one will still work for a while.) As ever, my employer is not responsible for my offensive ravings.

Now let me say a bit more about this evolution thing. As you all know if you haven't slept through the winter, this year is the 200th anniversary of Charles Darwin's birth and the 150th anniversary of the publication of On the Origin of Species. Massive blog swarming is planned, along with other festivities, and the inevitable counterfestivities. So we can expect this thing to heat up. In fact, we're already getting very close to the birthday, on February 12. You can definitely expect me to participate.

So here's a bit of warm up. There are two main reasons why people don't accept the overwhelming evidence for evolution and the complete adequacy of evolution to explain the phenomenon of life on earth. One is that they were indoctrinated as children to believe otherwise and it's just very difficult for people to overcome the beliefs stuffed into their heads by their parents and other authority figures. All we can do about that is expose people to more and better information.

But the second reason is that a lot of people just find the real world we have discovered since the 19th Century to be unsatisfying. They don't want to live here, it doesn't feel good to them to believe that they are what they really are, and so they cling fiercely to a fantasy. This problem does not have to be intractable. It turns out that once you understand it, humanism can be a perfectly satisfying philosophy after all. So one of my contributions to the birthday party will be to serve as a positive spin doctor. I hope I can spin you into ecstasy as well.

A Time to Worry

Somebody should ask James Dobson and Rick Warren why the Intelligent Designer has taken to designing antibiotic resistant bacteria. I'll be particularly interested in His reasons for designing vancomycin-resistant Enterococcus faecium. The Lord works in mysterious ways.

What I do

In response to C. Corax, unfortunately there are some weird rules to the science game -- rules which may be undemocratic, but which I have to play by. In particular, I'm not allowed to go public with research results until they have been published, except in a limited way at academic conferences. That means we've found out some stuff here that I think is interesting, but I can't tell you about it or I might get in trouble. In fact it would be helpful to get some feedback from a broad audience, and would undoubtedly improve the interpretation and applicability of results, but that would be violating the privileges of the secret society.

So let me at least tell you more generally about my interests.

I originally became interested in what is generally framed as the problem of cross-cultural competency in medicine, and the broader issue of how language and culture shape people’s understanding and engagement with their health and health care, and that of significant others. These interests developed largely for reasons of personal history, but the subject also happens to be of topical importance, complex, and intellectually interesting.

I quickly recognized that the cross-cultural situation just adds a layer of complexity to what is already a very problematic kind of encounter, and that the problem of cultural competency is often misconstrued. So here are a few observations I made early on that are central to my current perspective.

In 1996 I had the opportunity to audiotape 150 pediatric visits, mostly in primary care but also a few pulmonology (all asthma), lead clinic, and growth and development specialty visits. About 2/3 of the families in the set are Latino, with every possible language situation: Dr and mother (or the occasional aunt or grandmother and a couple of fathers) both speak English fluently; mother gets by on less than great English; mother and Dr both speak Spanish fluently; Dr gets by on less than great Spanish (but probably thinks he’s Cervantes); there’s an interpreter (a bad one, in 100% of cases); and in one case, the 12 year old sister of the sick infant interprets. There is also a case in which a Haitian physician and Cape Verdean mother communicate with each other in broken Spanish.

The journal articles which have come out of this data set all concern interpretation; unfortunately I haven’t had the time or resources to turn my numerous conference abstracts on other subjects into articles. But here are the bullets:

Cross-cultural competency was oncen understood as being all about people’s culturally specific health beliefs and practices – the weird voodoo and herbal concoctions of those colorful, primitive exotics. Providers are always getting dragged off to these workshops where an expert will tell them all about mal de ojo and Santeria. Pish tosh . . . and that is now generally recognized.

These practices and beliefs obviously do exist, but learning about them has next to nothing, or maybe less than nothing, to do with becoming a culturally competent provider. After all, quite a few suburban WASPs who played on the same college golf team with the doctor gobble potions they buy at the GNC, have the nuns pray for them, wear copper bracelets, or chant. Providers can always ask about that stuff if they think it’s important.

The real problems of cross-cultural competency are just a crust on the standard casserole. The language barrier is a huge issue of course, and interpretation is at best a necessary evil and hardly a solution – of which more anon. But setting that aside for the moment, cross cultural encounters differ in degree, not in kind.

My observations – as yet informal, so let’s say hypotheses – are that cross cultural encounters are often relatively ineffective due to the following characteristics:

• Misalignment of expectations about role relationships and interaction styles. For example, Latinos often perceive that Anglo doctors are “cold,” overly businesslike, and unfriendly. I don’t know about medicine, but in social services and behavioral health we often run into boundary issues – the clients want to invite the therapist to the family barbecue or the baptism.

• It may seem paradoxical, but this does not imply an expectation of lesser social distance. On the contrary. Providers may be unaware of the extent to which their cultural authority inhibits people from providing intimate or embarrassing information, asking questions, or indicating that they do not understand something.

• Non-comprehension of people’s lifeworlds. Providers don’t appreciate, and don’t think to ask about people’s social, economic and physical context and how it may interact with adherence to medications, life style recommendations, appointments and follow-up, etc. This includes the specific issue of individualism vs. family and community in treatment decision making and self care. (Hint: the dominant Anglo culture assumes these are essentially issues for the patient as an individual.)

You’ll notice right away that patients don’t have to be exotic for these problems to apply, one way or another.

Also notice that I haven’t said anything about health literacy, comprehension of scientific theories of disease and treatment, or remembering and following complex instructions, and that’s because none of that has anything to do with whether a situation is cross-cultural or not, assuming we get past the basic issue of communicating with people in a language they understand. It helps, obviously, when patients have more formal education, but I have found that even well-educated people whose education doesn’t happen to include a lot of biology and biomedicine can be pretty much at a loss when it comes to etiological and therapeutic theories.

It’s important to remember, however, that in general, people don’t know what they don’t know. We can observe from the outside that people’s understanding of how their doctors explain their diseases and treatments is not well aligned with what their doctors actually think, but people very seldom complain that their doctors say things to them that they do not understand. By and large, they either think they do understand, or it goes right over their heads without their really paying attention. Their complaint, if any, is likely to be that they weren’t told anything at all, the doctor never mentioned that. The concerns of “health literacy” and instrumental understanding are pretty much etic to patients. Most of the time, they’ll fill in the blanks with a story that satisfies them, rather than decide they didn’t understand something.

So, what do patients take away from their encounters with their physicians, and vice versa? (Note that the question of what physicians understand about their patients is not as commonly asked.) How do treatment decisions really get made, what communication strategies result in better mutual understanding, more success by both physician and patient at managing disease, and better lives for people?

A second broad interest concerns the social production of health, of which medical care is not such a huge part after all. Call it health equity. Justice if you will. Again, I tend to see it through a frame of culture and ethnicity but that's just an extra layer, you don't have to be a foreigner or a minority group member to get screwed, one way or another. My first graduate degree is in environmental policy (which is how I learned that economics is a crock) and I'm trying to understand how communication in the clinic and people's life worlds are connected.

Finally, there is still that problem of language. How does language construct reality, what are the limitations of interpretation -- ultimately meaning simply cannot be entirely the same in different languages -- and how can language barriers be minimized in clinical practice?

So those are the areas in which I believe I am some sort of expert, but that doesn't mean I know more than you do about them. It just means I know about them in a particular kind of way. We all experience our own lives, our own health, our own encounters with the medical institution, and we know all about those subjects. So I intend to do research in a way that is still fairly unconventional, and that is in partnership with people who used to be treated entirely as subjects: what we call participatory research. So I'm hoping that all of you can be participants as well.

More on Democracy and Science

Dennis Overbye, in a very well-written essay, argues that a healthy scientific enterprise is the mark of a healthy democracy. He uses as his counterexamples Communist China and the Soviet Union, but he opens by invoking the past 8 years and the elation we all feel at the restoration of science to its proper place of honor in this country.

Overbye sees science itself as an essentially democratic and democratizing exercise, and I agree that in the long run it has proved to be so. Nevertheless I have long argued here that science as actually practiced is much less democratic than it ought to be, and that many people -- probably most Americans, in fact -- see it as exclusionary and even oppressive. Rank and file creationists don't cling to their beliefs because they are an inferior breed, but they feel scorned by an establishment they perceive as arrogant and hostile to their values. In other words many on the scientific side of the divide do look down on them, or at least on the leaders and champions they respect.

For the cause of science to triumph, we must continually struggle to bring more people inside, and we don't invest enough in doing that. The academy is insular and obssessed with hierarchies of rank and title, degrees, institutions, journals, and awards. People won't be convinced by scientists who insist on speaking a private language of exclusion, strutting about in their glorious professorships, and not letting your kids into their university. Writing for popular consumption and speaking to a mass audience actually earns you demerits at Harvard and has even done some famous professors out of a job. Paul Starr and Cornell West come to mind.

I pledge to work to build a research institute without walls. It doesn't make any sense to study physician-patient communication entirely from the physician's side. We're going to bring in patients as full partners in this enterprise, not as research subjects but as participants who contribute equally to the scientific product. It may seem less than obvious how to go about that in biology, or physics, or cosmology, but I believe it can be done. Of course hard won expertise and exceptional talent are essential to good science, but arcane knowledge and membership in exclusive societies do not contribute to making the right choices about what questions to ask and what sense to make of the answers. Those are the rightful domain of everyone.

If they can send a man to the moon . . .

The other day a guy got on the elevator with me, and I saw from his badge that he was Doctor Umptyump, Rheumatology. So I asked him, "Can you cure my medial epicondylitis?" That's how you say tendinitis in the elbow in doctorese.*

"No, but I can inject it."

"I understand that just makes it worse in the long run."

"Yep, it's not a good idea. You should just live with it. That's what I do."

If you look this up (it's not actually tennis elbow, it's the opposite ligament, on the inside of the elbow, but same idea) the book says that with a few weeks rest, it will ordinarily resolve. Sometimes, and sometimes not. It can also be chronic and quite intractable, as my new friend the rheumatologist obviously knows. And there's not a damn thing medical science can do about it. (The injection he referred to is a cortisone injection, which will knock down the inflammation, but can permanently weaken the tissue. Sometimes athletes have it done so they can get back in the game but it's not a trade off that makes sense to me.)

The larger point here is that medical advances have largely missed some of our most prevalent annoyances. They still can't cure or prevent the common cold, osteoarthritis, or chronic tendinitis. I don't think that colds have much of an impact beyond being a nuisance, but the musculoskeletal deterioration we tend to suffer as we grow older does cause people to become less physically active and so can contribute to bigger problems -- such as diabetes and heart disease, not to mention depression. UI don't intend to slow down if I can possibly help it, but not everybody's pain threshold is as high as mine. Just a little hint for the good people at NIH.

*I once saw a podiatrist because I had suddenly developed a very stiff big toe. He said, "Oh, you have hallux rigidus." I said, "What's that?" He replied, "That means a stiff big toe." I wasn't paying for a Latin lesson. And no, there was absolutely nothing he could do about it except teach me how to say it in Latin. It's osteoarthritis.