"We have gone terribly astray in the last 30 years. What went wrong?"

The title of this post is from Jan Bellamy, noting that 30 years ago Claude Pepper's subcommittee on health and long-term care published a report trashing the then-$30 billion a year health quackery industry. That's everything from naturopathy to acupuncture to homeopathy -- all fraudulent, then as now. And yet, instead of getting itself stamped out, this fraudulent enterprise has only grown, not only in size but also in acceptance. Quackery has wormed its way into medical schools and prominent clinics, from Harvard to the Cleveland Clinic. It even has its own institute within NIH.

But it isn't just health care fraud. The prestige of science has been demolished in this country. One of our two major political parties has denial of climate science as a central plank in its platform. Measles cases in the U.S. are now at the highest rate in 20 years because parents refuse to vaccinate their children. Creationism is an open and influential political movement. And now we have this outrageous and moronic behavior by politicians from Maine to New Jersey, plus the loathesome Andrew Cuomo in between, over ebola virus.

Let me give you the 4-1-1. Upon initially infecting people, the ebola virus is at such a low level in the blood that it is undetectable. Rather, it infects internal organs. It produces no symptoms, and it is not shed in urine, feces, sweat, saliva or for that matter in blood. People without symptoms are not infectious -- we aren't just talking low risk, we are talking zero, as in zip, zilch, nada, nothing, not happening. Note that Tim Duncan's family lived with him for days, while he was symptomatic, in fact, and not one of them became infected.

The infectious stage of ebola disease happens when the person is very sick. That's when the virus appears in the blood stream and in bodily secretions in sufficient quantities to be transmissible. Ergo, a person who has potentially been exposed need only keep track of his or her temperature and note any possible symptoms of the disease, and present to a hospital as soon as they appear, and we'll all be safe. If you don't trust people to do that, you can have a public health worker visit them a couple of times a day. I can see justification for travel restrictions since you don't want to lose track of the person or have them come down with symptoms in a situation where an appropriate response is not close to hand, plus which a certain amount of irrational fear is inevitable and you don't want to burden authorities elsewhere with it.

But Chris Christie and Paul LePage are both claiming that they know better than Anthony Fauci, and the public doesn't believe him either. Listen up folks: scientists don't know everything, and indeed they are often wrong. But there are some things we do know. We know this.

Odds and Ends

Research Ethics: Poli-Sci profs at Dartmouth and Stanford sent mailers to voters in Montana, bearing the state seal, claiming to rate candidates in non-partisan judicial elections according to their ideological affinity Barack Obama and Mitt Romney. This is purportedly a research project to determine whether providing this information increases voter turnout.

Of course, leaving off the state seal, anybody is free to do this, but if the purpose is research you have a whole different kettle of ethics. First of all, while it might seem unobjectionable to increase voter turnout, we don't actually know ahead of time whether this will increase it or decrease it; we also don't know whether it will influence the results of the elections, and reasonable people can disagree about either the accuracy of the ideological ratings, or their relevance to fitness for judicial office. (The ratings were evidently based on the candidates' previous political contributions, and unspecified other publicly available information.) One would expect that in Montana, being linked to president Obama would be a disadvantage.

Research on human subjects must not predictably do harm, and there are lots of ways this can do harm. Toss in the state seal and dudes, what were you thinking? The Dartmouth Institutional Review Board is said to have approved this. Eww.

Elon Musk is only half smart: Apparently he fears the revenge of our robot overlords. Me, not so much. Here's the thing about artificial intelligence: actions require motivation. There is no reason why a computer program would desire, or for any reason strive for power or any action harmful to humanity. Computer programs carry out instructions. In order to interact with humans, they must be programmed to respond in particular ways to particular inputs. That is all. And, you can always just turn them off.

That said, we're nowhere near artificial intelligence. Watson is completely idiotic, it doesn't understand anything, it just makes predictions based on statistical associations with semantic content. I do work in computational linguistics and believe me, the way computers label speech acts and identify topics has nothing to do with understanding anything and they won't do anything with those labels other than print them out or create some sort of response to the human interlocutor which hopefully will be appropriate, such as listing the nearby pizza restaurants (when you actually wanted to know how to make a pizza). I am not afraid.

Chris Christie and Andrew Cuomo, however, are afraid, or more likely pandering to the irrational fears of voters as whipped up by Faux News. This crap just makes me plotz. Christie confined this heroic nurse in an unheated tent, with a porta pottie and no shower, having take-out food delivered by workers in moon suits. There is absolutely zero danger of her infecting anybody. Absolutely outrageous. The man is a clown.

Bizarre Obsessions

It's becoming something of a theme here that the obsessions of the forum are largely insane. For example, is Renée Zellweger really the first performer ever to have plastic surgery? So it would seem.

On to more serious matters, comes now the case of the son of a senior Canadian federal official, with a lengthy history of substance abuse and criminal offending, who was likely mentally ill if we can believe the reports that fellow residents of the homeless shelter where he was living that he was talking about the end of the world. This pathetic individual, acting entirely on his own, killed one person and was then killed by a security guard. He apparently claimed to have converted to Islam although I doubt he knew anything about Islam or had gone through any conversion process or ceremony. But this is the single most important thing that happened all week -- after all the other nothings that were even more important the day before.

Get over it folks.  

Yes, we Americans are weird

An essay in the new JAMA by health economist Uwe Reinhardt, which alas is for subscribers only so you pitiful rabble can't read it. He discusses the movement (much beloved by conservatives) to make people may more of their medical costs out of pocket, which Republicans call ""consumer-directed health care." Ha!

As Uwe informs, and as everybody should already know but hardly anyone does, in the civilized world health care providers - doctors, hospitals, nursing homes, pharmacies - are all paid the same amount for a given product or service based on published fee schedules. In countries where there are multiple insurers, they all pay the same price.

Here in nutso land, every private insurer negotiates with every provider, which means that different providers receive different fees from the same insurer, while simultaneously the same insurer pays different fees to various providers (or none at all if they can't come to an agreement in which case the provider is "out of the network.) If you don't have insurance, and couldn't get in on the negotiations, of course, you will be charged an outrageous amount. Also, too, Medicare and Medicaid don't pay enough to cover the full cost, which means costs get shifted onto private payers.

As wacky as this is, making people pay out of pocket just makes matters worse because a) many people can't afford their medical costs at all. If you have a high cost-share policy, you could end up spending more than $10,000 a year, which lots of people don't have. Second, telling people to shop for their own health care is ridiculous. There can be thousands of separate items on a hospital's or physician's menu of good and services, most of which are completely uninterpretable to almost everyone. And the only way we really know, or think we know, what we need or how much we'll benefit from a medical procedure is because our doctors tell us so. We can't meaningfully make our own choices as we can in markets for say, cheese. We know what we like and what we're willing to pay for it. In the case of medical care, not a chance.

There is no such thing as a "free market" in health care, and pretending that is like other goods and services is transparent nonsense.

We need universal, comprehensive, single payer national health care. Oh, have I said that before?

On the other hand, who cares about this?

Last month was the hottest September, globally, since record keeping began 135 years ago. 2014 will almost certainly be the warmest year on record. And next year will very likely be even warmer, with the developing El Niño.

But, Ebola. Migrant children. Benghazi! Are we all going to die? Yes.

Stupid Question

Now that the Ebola virus is extinguished in North America somewhere well short of the collapse of civilization, and there is even progress in Africa, will the wingnut politicians and pundits who took to Faux News and far right hate radio to fan hysteria and even accuse president Obama of trying to create an Ebola epidemic lose any credibility?

Why did I even ask.

Now this is truly getting ridiculous

A teacher in Maine has been placed on leave because she attended an educational conference in Dallas, 10 miles from Presbyterian hospital. Really. Bring on the killer asteroid, is all I can say.

Time to set some heads a-rollin'

I still maintain that ebola virus is a very minor public health concern in the United States, it is a very big public health concern in west Africa and possibly eventually elsewhere; and it is a very big threat to the global economy and to U.S. politics. But . . .

We will never persuade the American people or the ignoramuses in the corporate media that our attention and our resources should be focused on west Africa, not Kennedy Airport, if it does not appear absolutely and transparently true that our medical and public health infrastructure is fully competent to protect us. And no, it doesn't look like that. The medical director of Texas Health Presbyterian Hospital should be escorted to the door and banned from the premises, along with the director of emergency medicine and the director of infectious disease. Not only was Mr. Duncan sent home despite telling the nurse that just arrived from Liberia and having a fever of 103, we now learn that after he was admitted to the hospital upon returning, his care team did not wear full protective gear for two days.

Nurses all over the U.S. are now coming forward to say that they do not feel prepared, have not been adequately trained, do not have adequate equipment, that procedures and policies are not in place, and that they have not drilled. Again, the probability that any given hospital will encounter an ebola case is very small, but public perception of risk is what's at stake here.

Then there is whoever is head of the division at CDC responsible for telling nurses who have exposure liability that they can go ahead and use their round trip ticket to Cleveland. This is not a question of the actual risk to the public, although I must say that as this story has played out it is not in fact zero. But even if it were zero, the consequences are inevitable and unacceptable: schools closed, hundreds of air travelers terrified, money spent to sterilize school buses and an airplane, public health workers spending their days following people around in two states who ought to be doing real work such as tracing partners of people with HIV and STIs, tracking down sources of food poisoning, getting kids vaccinated. In other words we will have some additional cases of infectious diseases because of this.

Now it turns out that a pathology technician who handled some of Mr. Duncan's specimens is on a Caribbean cruise in Belize. Let me repeat myself: it is irrelevant if she or he is actually at substantial risk. This is so utterly, gobsmackingly boneheaded that it makes me shriek. The risk is obviously not zero and what the hell will they do if this person starts vomiting blood in her cabin, on a cruise ship, in Belize? And even if the risk is zero, how do you expect the public to react to this?

The authorities seem to be doing everything in their power to fan the flames of fear and build them into panic. A display of competency and enough excess caution to convince people that it's really enough are absolutely essential if this is not to turn into a disaster -- an economic and political disaster, which will gravely damage the U.S. and meanwhile prevent us from doing what must be done in west Africa, which only the United States has the resources to do.

President Obama is saying the right things, but the CDC is doing its utmost to sabotage him.

Update: Stupid crap like this, for example:

Syracuse University on Thursday disinvited a Pulitzer Prize-winning photojournalist who was scheduled to participate in an upcoming journalism program because he was recently in Liberia covering the ongoing Ebola crisis.

The dean of Syracuse's S.I. Newhouse School of Public Communications, Lorraine Branham, spoke to News Photographer magazine about the decision to disinvite photojournalist Michel du Cille. "He was disinvited because of concerns that were generated by some students that led me to believe that it would lead to even more concerns," she said. "So it was in the best interest of the students for me to withdraw the invitation."

 He left Liberia more than 21 days ago, BTW.


 

The secret history of the world

By now, you have no doubt heard all about the New York Times report on the exposure of U.S. military personnel to discarded chemical weapons in Iraq. It is indeed a scandal that the Bush administration and its military kept these incidents a secret, failed to provide troops with the information and equipment they needed to stay safe, and failed to properly compensate or care for the injured. Yeah, that's bad, but it buries the lede.

Of course the wingnuts are already screaming that there were too Weapons of Mass Destruction™ in Iraq after all, but obviously that isn't true. The last thing W would have done is to keep that a secret. As the Times story says, "The discoveries of these chemical weapons did not support the government’s invasion rationale." These weapons were manufactured in the 1980s and mostly buried after Iraq abandoned its chemical weapons program. They were no longer usable, although the residues were dangerous. But . . .

The real story is that the U.S. and European nations supported Iraq in its war against Iran, so they made sure Saddam had these chemical weapons. German firms provided manufacturing plants, and U.S. firms sold Iraq the chemicals to make mustard gas. European companies provided the shell casings and rockets. The U.S. was well aware that Iraq was using these weapons against Iran, weapons which the U.S. and its European allies were supplying. In case you don't remember, the president of the United States was St. Ronald Reagan.

But the false accusation that Iraq had a current Weapons of Mass Destruction™ program provided the rational for an illegal war of aggression by the U.S. The use of chemical weapons by Bashar al-Assad was a "red line" that would have triggered a U.S. air assault if Vladimir Putin hadn't arranged a way out. The point is, all of our political discourse is hypocrisy and lies. The Times occasionally does a service like this and reveals the truth, but it pretty much sinks without a trace in the public consciousness.

Another goodie from the Times today, the not always reliable Frank Bruni. Like I said.

Proportionality

Sorry for my absence, I needed a few days to clear my head and the muse just didn't inspire, not for this blog at least . . .

Anyway, it's something of a repeating theme for me that we humans just aren't very good at deciding what is important, or what we ought to be worried about more than something else. So, of course the ebola virus is worrisome. Lots of people have already suffered and died and many more will. But the attention it deserves is mostly because the incidence is increasing in the fairly restricted geographic region where the outbreak is occurring, and nobody can be sure how it's going to play out.

Here, Andrew Ross Sorkin reports on calculations by the world bank that the economic cost of the outbreak will be $32.6 billion by the end of 2015 if the virus spreads to neighboring west African countries, which they consider to be a worst case scenario. That's a lot of money no? Well yes, it's probably about five times as much as the U.S. will spend bombing Syria and Iraq during that period. On the other hand it's about 1/300 of the trillion dollars we spent on the previous Iraq war. (Of course the U.S. will bear little of the cost of ebola.)

Yes, people are dying. Many fewer than died in the Iraq war of course, but it is also true that more Africans are dying right now of malaria, TB, HIV, and diarrheal diseases than of ebola, by orders of magnitude. Even in the worst case scenario, that will still be true.

As Sorkin's story tells us, the biggest economic risks are from overreaction, not the epidemic itself. Impediments to international travel and trade, useless spending, fearful declines in investment -- those are likely to cost more than $32.6 billion.

So why the wall-to-wall media coverage? Well, for one thing it's novel. That's what the word news means, after all. But this is a cognitive bias that's costly. Buried on page A-14, and nowhere to be found on the web home page, the NYT tells us of a new Pentagon report detailing the national security risks of climate change:

The Pentagon on Monday released a report asserting decisively that climate change poses an immediate threat to national security, with increased risks from terrorism, infectious disease, global poverty and food shortages. It also predicted rising demand for military disaster responses as extreme weather creates more global humanitarian crises. . . .

Defense Secretary Chuck Hagel, speaking Monday at a meeting of defense ministers in Peru, highlighted the report’s findings and the global security threats of climate change.“The loss of glaciers will strain water supplies in several areas of our hemisphere,” Mr. Hagel said. “Destruction and devastation from hurricanes can sow the seeds for instability. Droughts and crop failures can leave millions of people without any lifeline, and trigger waves of mass migration.”

On the front page, however, we do have the story of the single person who was infected within the U.S., a nurse who cared for Thomas Duncan in Dallas. A single, identifiable person is much more likely to get our attention than the probability that even thousands of people who aren't identified, who are mere abstractions, will suffer or die. That's another dangerous cognitive bias. It's what led to the counterproductive reaction of the U.S. and Britain to the grotesque beheading of hostages by the self-styled Islamic State. Yes, we need to seek justice for those individuals but we need to keep the threat posed by IS in proportion and respond in a way that isn't going to make matters worse. Until those identifiable individuals were killed, that seemed likely to happen. Of course, that's why they did it.

That river in Egypt . . .

Is it really this deep? Remember Jahi McMath, who died last December but whose parents think she's alive because she's hooked to machines that keep her flesh from rotting? (Yeah, yuck, I know.) They're still at it, petitioning a court to have her declared un-dead. Her body is apparently now in a house somewhere in New Jersey, where somebody has paid to have the necessary machinery installed and for personnel to keep it running and keep most of her cells alive.

It is not puzzling, of courses, that parents cling to hope despite the vast weight of reality, as did Terry Schiavo's parents. What is puzzling is that their understandable delusions are incorporated into an ideological crusade by people who think that keeping corpses with dead brains in a state of pseudo-animation using late 20th Century technology is mandated by God. I somehow missed that passage in the Bible.

I remember during the Schiavo brouhaha a priest organizing Catholic teenagers to demonstrate with tape across their mouths with the word "life" written on it. Sorry folks, but this is not life, and if it were, why would you want it? It is, of course, possible to do this with just about everybody who dies, as long as their circulatory system can hold blood. I don't need to point out the reductio ad absurdum. (Terry Schiavo was not technically dead when she was disconnected from life support, but that's a distinction based on the new definition of death that had to be invented in the light of new technology. She was in a state that I would be happy to call death, and she would have been dead in any and every possible sense of the word far earlier if the machinery had not been available.)

What seems even stranger is that the people who take this bizarre position don't even believe that death is real. They think it's the greatest thing that can happen to you, that you go off to Paradise to be with Jesus. Why don't Jahi's parents want that for her?

The times they are a'changin'?

I was reminded by Adam Liptak's report on the Supreme Court's historic punt on gay marriage that in 1967, interracial marriage was illegal in 24 states. Not only that, but a majority of Americans supported banning it. The SC took that case, and declared the bans unconstitutional -- you know, that pesky 14th Amendment -- but honestly folks, that wasn't very long ago.

This is a salutary reminder for me because I've lived in something of a bubble as a New Englander from a liberal, well-educated family. I entered high school in the same year that the court ruled on interracial marriage, and although I wouldn't call Andover (also attended by George W. Bush) a hotbed of pinkoism in those days overt racism was definitely out of bounds and I can't recall encountering it. The black kids even had a bit of cachet as the Civil Rights movement was broadly inspirational in that cultural milieu.

As a community organizer in Philadelphia's poor white Fishtown neighborhood I encountered profound, grotesque racism, pretty much for the first time. So yeah, I knew it existed but that was a brief phase as I went on to graduate school and spent most of my adult life traveling in progressive circles and working in multicultural environments. So the real world out there, full of racists and creationists and homophobes is exotic to me. It's really hard for me to appreciate how commonplace ignorance and bigotry really are.

Ergo, I always struggle to understand why people vote for lunatics who believe, or claim to believe, in crazy ideas and are fully and publicly committed to working against those voters' best interests. It's sobering. On the other hand, who would have thought just 5 years ago that there would be majority support for same sex marriage in the U.S.? Racism has been very slow to fade, if it's fading at all right now, but for whatever reason, this particular form of irrationality is dying fast. Maybe there's hope for the rest of the reality agenda.

Bobby Jindal is still an idiot

He wants the U.S. to ban all flights from nations where Ebola virus has been found and, he says:

[T]he Obama administration keeps saying they won’t shut down flights. They instead say we should listen to 'the experts.' In fact, they said it would be counterproductive to stop these flights. That statement defies logic. How exactly would stopping the entry of people potentially carrying the Ebola virus be counterproductive? This seems to be an obvious step to protect public health in the United States.

 Okay doofus, it's time for you to listen to an expert. In the first place, the Dallas patient arrived on a flight from Brussels. I don't even know if there are any direct flights from Liberia or Sierra Leone to the U.S., but even if there are, it's easy enough for people to take connecting flights, even to travel over land to Lagos or wherever. So it would be pointless. Furthermore . . .

In order to combat the epidemic in west Africa, it is necessary to bring in personnel and supplies. Airlines obviously can't fly in if they can't fly out. It is also important to limit the economic collapse in those countries, and to limit fear and civil unrest. Closing them off from the outside world is about the worst thing we can do. Furthermore . . .

As you presumably know if you are conscious, there have in fact been several people in the U.S. with Ebola. We bring our citizens here when they contract it. Not a problem. Mr. Duncan's contacts are being carefully monitored. It wouldn't be surprising if one or two of them do come down with the disease -- particularly his family members who he was living with -- but it will stop there. The screwup at the hospital that allowed him to go home will not be repeated.

So again, Ebola is a problem in poor countries that lack medical and public health infrastructure. It is not a threat to become an epidemic in the United States or any other country -- even a middle income country like Mexico or Brazil -- that has the resources to deal with it properly. So please stop pissing in your pants.

Oh yeah, about the conference . . .

I'm not going to bore you with any of the specific presentations (okay, except for mine) but I will try to give a sense of the overall state of research into communication in health care. Yes, this is a scientific field and we do empirical research, as rigorously as our usually quite limited funding will allow. But it's impossible to separate facts from values.

The goal of health care is to make money improve patients' well being. But that presumably means different things to different people. Do you want to live as long as possible or enjoy yourself more? Do you want to take a chance on surgery that will probably fix your arthritic hips and let you get back out on the golf course, but might just possibly go wrong and leave you worse off? And so on, including many even more complicated and stress inducing situations.

Furthermore, your doctor might think that you will unambiguously be better off if you take some course of action, but for various reasons of your own you don't do it, one possibility being that if you take pills you will have to think of yourself as sick but you don't want to be. Is it the doctor's job to use our research to manipulate you into doing what the doctor thinks is best? To take a more concrete example, I feel that my orthopedic surgeon somewhat downplayed the pain and disability I would endure after thumb arthroplasty, but I'm not mad at him. I now feel that it was worth it in the long run but I might not have gone through with it if he'd been totally honest. Of course he also had the ulterior motive that he gets paid to do surgery.

The fact is that most patients will never understand the biomedical reasoning behind treatment decisions, and even if you strip the decision down to relative probabilities of understandable outcomes, most people don't really grasp the concepts of mathematical probability and they have all sorts of cognitive biases. A 90% chance of a good outcome and a 10% chance of a bad outcome are evaluated very differently, even though they are of course identical.

So, the value now is "shared decision making," which even has a standard presentation as SDM. The doctor is supposed to be the expert the probabilities of various outcomes of various courses of action, and the patient is supposed to be the expert on what she values the most among that landscape of probabilities and so we decide. But that is merely aspirational, Nobody knows how to accomplish it consistently in the real world in a meaningful way.

It's only over the last 20 or 30 years that we have even had this aspiration as the standard in medicine. It used to be that doctor knew best and we were supposed to follow doctor's orders. As you can imagine, it is a very complex problem to establish the relationship between features of clinical communication and outcomes because, pretty much by definition, what constitutes a good outcome is undefined going in. We can arbitrarily say it's life expectancy, or quality adjusted life years, or some specific reduction in some pre-specified symptom. But if we don't get there because the patient chose a course that didn't maximize that outcome, is that a failure? And asking people to evaluate decisions retrospectively is not very helpful; we have powerful cognitive biases in doing that.

So, we have to start by trying to measure what people understand after a clinical encounter, whether they feel their questions were answered, and how confident they feel in their ability to make choices that affect their health. Then, if we can define a patient centered good outcome, we can eventually find out if it's achieved --but we might have to follow them for years, and that costs a lot of money, and they aren't giving it to us, yet, for this kind of research.

I'll tell you exactly what I'm doing anon.

I am sterdam

The headline of this post is the ridiculous slogan of the tourist board. Nobody even knows what it's supposed to mean. (No, it doesn't mean anything in Dutch.) But that's about the only thing I have to complain about.

The single most notable feature of Amsterdam is not, in fact, that it's Waterworld, which it is. It's that on dry land, everybody gets everywhere by bicycle. There are wide, perfectly maintained bike lanes everywhere, that interweave skillfully with the streets and wide sidewalks. The traffic lights are set up to safely direct bicycles, pedestrians and motor vehicles. The actual volume of traffic is in that order. There is a continual torrent of cyclists everywhere: school kids, blue collar workers, guys in business suits, old folks, families with their kids, every conceivable category of human getting to work, to school, around town on errands. The style is to sit up very straight, and nobody wears a helmet. Also, nobody is fat.

Such few cars as there are include plug-in electrics, and there are charging stations on the street. Yep, you can grab one of the regular parking spaces and plug in your car. There is also a fantastic network of street cars that goes everywhere, frequently, and knits together the whole city. So the air is clean, there is no traffic congestion, and it's easy and safe to cross the street. The stream of cyclists however is a bit scary.

I'll have more to say about the city, and the conference. For now, however, I'll say this. It seems the deepest fear of conservatives in the this country is that we'll end up like Europe. Check it out, folks: it's actually better.