Turning it upside down

It is frustrating that current events have pushed Stayin' Alive to be mostly about Gettin' Dead lately. Like most people, I prefer to think about life rather than death and to devote the bulk of my political and intellectual energy to making life better. Death must be accepted, and learning how to accept it is essential to having a good life. But enough is enough.

A few weeks back I discussed the "rule of rescue." Quoting Jeff Richardson and John McKie in Social Science and Medicine (2005):

The "Rule of Rescue" -- the imperative people feel to rescue identifiable individuals facing avoidable death -- is closely related to the preference for helping the more severely ill, except that it applies to identifiable individuals rather than an entire category of anonymous individuals (those who are worst off) and the context is typically dramatic and unexpected. It is because an individual is identifiable, and in dire circumstances, that there is a powerful urge to rescue . . . . The priority accorded to identifiable patients in immediate peril is not based on the magnitude of the (health related) utility gains expected to result."

What this means in plain English is that people's ethical instincts lead them into a logical contradiction. It would be unethical not to do everything possible, to spend whatever it takes, to rescue a person in dire circumstances. By the same expenditure, we could prevent any number of persons from ending up in those dire circumstances in the first place, yet we don't do it, and we say that is because we can't afford it.

I have written before about those 29,000 children under five years of age who die every day from readily preventable causes -- contaminated water, measles, malaria, HIV. I don't see crowds of evangelical Christians demanding that Congress do something about this, standing outside the offices of the World Bank and the WTO and the IMF and AID chanting and praying, railing about the Culture of Death that allows this to happen. Yet I recall from my Bible studies that Jesus said, whatever you do to the least of these children, you do to me. So in fact what we are seeing in this country today is not a revival of Christian belief or Christian ethics at all -- it is a passion play, a drama enacted to appeal to a primitive impulse which drowns out reflection, overwhelms ethical reasoning, and aborts ethical action.

That's easy for me to say, but I am profoundly disturbed that I have not seen any visible, assertive, public movement by Christians to have an adult discussion about the ethics of public health and health care. To my Christian friends I have to ask, "Are you actually afraid of these people? Why don't you speak out?"

A Final Repudiation

I confess: a long time ago, in a galaxy far, far away, I worked for Ralph Nader, as a lowly but proud peon helping to lobby Congress for consumer protection, environmental protection, progressive taxation, all that good stuff. Ralph appeared to be for real. He lived modestly, almost ascetically. He did nothing but work.

Now, he wasn't exactly into grassroots organizing. Congress Watch, where I worked, set up so-called "Congress Watch Locals" to lobby their Reps on Ralph's issues, but then the locals started trying to promote their own issues and Mark Green (yep, that Mark Green) who was then Director of CW started complaining about "the tail wagging the dog." Ralph wasn't exactly into organizational democracy either. He made all the decisions and he told everybody what to do. He even fired a guy for trying to start a union.

Still, I always figured he was on the right side of the issues. But then, like most people who don't want to be ruled by murderous thieves, pathological liars, and religious fanatics, I was fairly annoyed with him for his pointless, egomaniacal 2004 presidential campaign.

Now Ralph, you're in the dumper. The crusader for safe tires and comprehensible airline pricing has issued a joint press release with, get this, Wesley J. Smith of the Discovery Institute, calling upon "the Florida Courts and Governor Jeb Bush to take any legal action available to let Terri Schiavo live. A profound injustice is being inflicted on Terri Schiavo, Nader and Smith asserted today. Worse, this slow death by dehydration is being imposed upon her under the color of law, in proceedings in which every benefit of the doubt and there are many doubts in this case, has been given to her death, rather than her continued life."

If you just ate poison, and you need an emetic, you can check it out here

Oh yeah -- what is the Discover Institute? It's a front for creationists. I don't know how to explain WTF is going on here, but you might want to ask Jessie Jackson. Brother Jessie just got done putting Michael Jackson on his radio program, where he compared himself to Nelson Mandela and Martin Luther King, Jr. Now he's down in Florida doing joint appearances with Randall Terry. Is there something in the water?

Christian Ethics

Michigan Preparing To Let Doctors Refuse To Treat Gays

(Lansing, Michigan) Doctors or other health care providers could not be disciplined or sued if they refuse to treat gay patients under legislation passed Wednesday by the Michigan House.

The bill allows health care workers to refuse service to anyone on moral, ethical or religious grounds.

The Republican dominated House passed the measure as dozens of Catholics looked on from the gallery. The Michigan Catholic Conference, which pushed for the bills, hosted a legislative day for Catholics on Wednesday at the state Capitol.

The bills now go the Senate, which also is controlled by Republicans.

From proud parenting

Now, in my checkered past, I was involved in teaching a course at a medical school located, to my eternal shame, in the Sodom of America, the People's Repulbic of Massachusetts, where we covered that old-fashioned stuff like medical ethics. Yup, even a godless, science-based profession like medicine has ethics, even though they aren't those divinely inspired, bible-based ethics.

For example, doctors aren't allowed to exile people with skin diseases to the desert, where they must rend their clothes and cry "unclean, unclean!" (Leviticus 13, 43-45). Doctors are actually supposed to treat them! (I know, I know, it's sinful, and I repent my satanic teaching.) Doctors aren't allowed to stone homosexuals to death either -- they actually have to treat them just as if they were normal human beings, no matter what the Bible says.

But fortunately, the good Catholics of Michigan have taken the God inspired, Bible believing initiative to stop the liberal culture of death from forcing pious, God fearing physicians to commit the mortal sin of saving the lives of homosexuals and thereby thwarting the will of the omnipotent ruler of the universe. I tell you brothers and sisters, the Kingdom is at hand!

The Liberal Media

Q: What product do newspapers and TV news producers sell?
A: They sell eyeballs to advertisers.

And I'll bet you thought they were in the business of selling information to you!

This fundamental misconception leads to a lot of dashed expectations and consequent frustration and anger. But when you see things as they truly are, you'll feel better. Errr, maybe not.

Your local TV news, cable and broadcast network news, are in exactly the same business as the people who bring you My Big Fat Obnoxious Boyfriend, WWE Smackdown, Celebrity Fear Factor, and the Spice Channel. Come to think of it, not only are they in the same business, they are the same business. They may be in a separate division, technically, but they are evaluated in exactly the same way -- how much profit do they generate for their corporate owners. So why should we expect the content to be any different?

And why should we expect them to spend money on unnecessary frills like people who actually know something about a subject who can report and write critically on the events of the day? That would just be a major downer anyway -- who wants to watch boring shit like that? It's easy, and cheap, to just go out and find the stuff that sucks in those eyeballs -- dramatic conflict, violence, tawdry sex, maudlin sentiment, gross outs, horror, schadenfreude. Even better, there are plenty of people out there who create and produce stories for you absolutely free of charge. Just go out and film them.

Public policy is boring, but political conflict is dramatic. It gives us suspense, tales of vengeance, the elevation and destruction of the famous and powerful, a team to root for and a team to throw your beer cup at. Statistical abstractions like life expectancy and morbidity rates are guaranteed four bowlers, but the story of a struggling, damaged woman and a divided family, that has potential!

So, in between Michael Jackson's porno magazines and the war or the basketball game, take your pick, we get Robert Schindler as Jeremiah crying that we have abandoned God and instituted state sanctioned murder of the weak and useless. Jeremiah is surrounded by a grand spectacle of berobed priests and monks, crowds collapsing in a fervor of prayer, the President of the United States flying to Washington in the middle of the night to rescue the imperiled damsel, and most important, Jeremiah's got film of his own! There she is, gazing beatifically into her mother's eyes. And the liberal secular humanist culture of death conspiracy is determined to sacrifice her to Baal, abetted by activist judges who have hijacked democracy.

On the other side, you have a talking head lawyer explaining that the courts have carefully considered the facts of the case, with repeated appeals and reconsiderations, and have determined based on credible medical testimony that Ms. Schiavo is in a condition called a Permanent Vegetative State. Possibly you have a physician or neuroscientist explaining the cerebral architecture and the relationship between various structures in the brain and specific faculties. But Jeremiah has a neuroscientist of his own of course -- nominated for the Nobel prize!

It's not the TV newsreader's job, and it's certainly way outside his expertise, to sort out whether one of these doctors is legit and the other is a quack. I mean anyway, the guy's been nominated for the Nobel Peace Prize in Medicine! And it would just be a major bring down to have some bunch of egghead neurologists debating the technical issues here. It's much more fun to show people yelling at each other!

Last night my local TV news featured 10 minutes of the Schindler's and the circus of piety outside of the hospice. Nothing else. Why is that? Because everybody else has shut the fuck up and is trying to respectfully leave the poor woman and her husband alone. So the Schindlers and the monks are the only material that's out there to film. It's obviously not the job of the news media to supply an answer to Robert Schindler telling the world that his daughter is "alert and responsive, and she's fighting like hell," even though anybody who has the slightest familiarity with people in her circumstances can tell you that she is now in a profound coma. We're in the entertainment business. Reality -- real reality, as opposed to reality TV -- is a drag.

What This is Really All About

In joining the recent feeding frenzy, every pundit discernibly to the left of "Reverend" Fred Phelps -- and that includes not just the blow-dried bloviators of the corporate media but independent Internet pals such as Tectonic Josh Marshall and recovering economist Duncan Black -- has felt compelled to cover butt by going on about horribly difficult and excruciatingly complex is the morality of end of life, and how respectfully we regard the sincere and compassionate motives of the protestors in Florida and most of the members of Congress who voted for the special legislation yadda yadda yadda but rule of law yadda yadda yadda private matter political grandstanding yadda yadda yadda.

Actually no. Only a tiny minority of people actually believe that society is morally obligated to use elaborate technology to preserve the biological functioning of people who lack conscious awareness and have no hope of recovering it. This group of bizarre deviants happens to include the morally vegetative Pope and the megalomaniacal Randall Terry, among other exotic species, but as a voting bloc, it trails fervent believers in alien abduction.

The Terri Schiavo controversy was not about moral principles, but about reality -- plain old fashioned facts. Her parents claimed that she was not, in fact, in a persistent vegetative state, that she responded to them, and had hope of recovery if she were to receive (unspecified) therapy. Her husband believed otherwise. The courts adjudicated this issue by referring, not to ethical debate, but to physicians who convinced judges, on at least 19 occasions, that Terri was not aware, was not responsive to her surroundings, and could not recover. The physician witnesses supplied by her parents were quacks who no-one could take seriously, whose mystical beliefs were irrefutably contradicted by radiological evidence that Terri's cerebral cortex had disentegrated.

Also at issue was what Terri's personal wishes had been about what should be done if she were to end up in such a state. Again, although her parents claimed she would have wanted to be kept "alive," the courts determined, based on a factual record, that at the time they said she expressed those wishes she was 11 or 12 years old; and that as an adult, she had said otherwise.

Bill Frist and Tom DeLay, in arguing for the Schindlers' case, did not refer to moral principles but to their conclusions about reality. Frist notoriously diagnosed her condition by looking at the edited videotape supplied by the parents, not by reference to the Bible. The Schindlers' latest appeals were not based on ethical arguments, but on their claim that certain noises Terri had emitted -- specifically "mah wah" -- meant, according to their Star Trek Universal Translator -- "I want to live."

There is actually little or no fundamental debate in this country about the ethics of terminating life support for people who lack functioning cerebral cortexes. Although most people, I would venture, don't really know what a cerebral cortex is or anything about how the architecture of the brain is related to the specific human faculties, they get the basic idea of the difference between vegetative functions and human consciousness.

The reason there was a controversy in this case that largely fractured along religious lines is that many in the religious right believe that others -- liberal believers and non-believers -- are morally depraved, and therefore capable of starving to death a conscious human being who had expressed a desire to live. They therefore accepted a false version of reality.

The protesters who attempted to enter the hospice in order to bring Terri food and water obviously did not know that Terri was incapable of swallowing and that the feeding tube was surgically implanted in her stomach through her abdominal wall. No doubt they were also swayed by the video, supplied by her parents and played in an endless loop on television, in which Terri's mother places her eyeballs in the path of Terri's vacant gaze and so simulates eye contact. The failure of the corporate media to ever get around to explaining the facts of the case -- and I acknowledge a few exceptions, about which more later -- allowed this travesty to take place. I have promised to flame the media, and I will keep my promise. But today's subject is truth.

Back to the Mountaintop

I'll be away from your internets for a couple of days, trying to compose a flame worthy of the contempt I feel for our putrid, stinking excresence of a corporate "news" media and the vile, hypocrite politicians who know how to make it stink exactly the way they want it to.

Meanwhile, here's a great site with a boatload of information about health care and health care policy, a link to a toolkit for people (I assume that's all of you!) who want to work to save Medicaid, and even good graphics:

Community Catalyst

Today's poll question: Is Jeb Bush guilty of a crime?

Right to Life

Nobody bit on my thought experiment, so I guess it's up to me. What would it mean to base public policy on the principle that every person has a sacred and inviolable right to life, not just embryos and people without functioning cerebral cortexes, as the moral values people would have it?

Logically, it means we would have to allocate society's resources to bring about the maximum possible life span for everybody. If a death can be prevented, we have an obligation to do whatever it takes, that's our principle. If it applies to Terri Schiavo, it applies to everybody. Of course, resources are not infinite, which means if we take one action some other possible actions must be foregone, so it gets complicated fast, but there are some obvious places we can begin.

A crude measure, but one that proves we aren't doing what we are morally obligated to do as a Christian nation, is called premature death. That's just the loss of years of productive life due to death before age 75. Now, some people are going to die before age 75 because of congenital conditions that we have no technical means of preventing, but even deaths from so-called Acts of God -- hurricanes, earthquakes, etc. -- can be reduced by investing in stronger buildings, warning systems, etc. Most of those premature deaths are readily preventable, anyway -- eliminate smoking, obesity, bad diets, preventable infectious diseases; screen everybody for high blood pressure, breast and colon cancer, etc.; and reduce social inequality, because people with less education and less rewarding work die sooner.

So let's take a look at the years of potential life lost per 100,000 population, adjusted by the age structure of the population, on a state-by-state basis. Which states rank the worst, according to CDC? They seem to have a red hue -- Mississippi is at the bottom, 10,713, followed by Louisiana, Alabama, South Carolina, Arkansas, Tennessee, West Virginia, Oklahoma, Georgia, Kentucky -- oh my, here comes a blue state at last, Delaware, but then there's North Carolina, Nevada, Missouri, Alaska, purple New Mexico, blue Maryland, then Florida, Indiana, Arizona, Wyoming. You get the idea. The top-ranked states are Minnesota (at 5,595, just about half Mississippi's rate) New Hampshire, Hawaii, Iowa, Vermont, Massachusetts, Utah (the Mormons walk the walk, they don't smoke or drink), Washington, Connecticut, Maine, California . . . . Ohio, for those who may be wondering about the purplest of the purple is ranked, yep, 25, right next to Pennsylvania and Illinois. Hmm.

So all those folks with the moral values ought to start worrying about their own sacred and inviolable right to life. Something is killing them, and their preachers and political representatives aren't doing anything about it. I feel a moral values crusade coming on . . .

You can check out your own state's ranking on this and all sorts of other indicators at United Health Foundation

The World Within

No, I'm not talking about anything mystical. Assuming you are an adult of approximately normal size, almost three pounds of your body weight consists of the microorganisms that inhabit your body. That's less than 2% by weight, but it's more than 10 times as many microbial cells (mostly bacteria) than we have human cells. And by the way, I'm assuming you are free of any infectious disease. These organisms aren't making us sick, they just live inside us. And as a matter of fact, many of them are keeping us alive.

We aren't just organisms, we're ecosystems. Our microbial inhabitants are busy competing, cooperating, eating each other, recycling each other's waste, and of course eating us, feeding us, and modifying our insides physically and chemically, for better or for worse. I'm inspired to note this now by a review of "Microbial Inhabitants and Humans: Their Ecology and Role in Health and Disease," by Michael Wilson, in the new JAMA. The reviewer, Dr. David Haburchak, writes that "After reading this book, I have haunting thoughts of burned-over forests inside patients to whom I have administered broad-spectrum antibiotics."

Indeed, your host took antibiotics for an ear infection a couple of years back and ended up with an extremely unpleasant candidiasis infection of the throat -- commonly called thrush -- because the antibiotics wiped out the symbiotic ecosystem that normally keeps me safe and allowed the malevolent fungus to move in.

There are a bewildering variety of complex ecological regimes on our skin, in our eyes, sinuses, mouths, throats, stomachs, intestines, bloodstreams, urinary tracts -- including the notorious helicobacter pylori that cause stomach ulcers in some people, but protect us from gastroesophogeal reflux and from esophogeal and stomach cancer. One more thing to think about the next time your doctor gives you a prescription for antibiotics.

A Radical Thought Experiment

Suppose we grant that human embryos and human bodies that lack a functioning cerebral cortex have a sacred and inviolable right to life. Now suppose we were to extend that right to people who have been born, who possess conscious awareness and moral capacity.

What would be the consequences for law and public policy, including regulation and taxation? How would these policies accord with current conservative beliefs in general?

The Soft Tyranny of Expertise

Senate Majority Leader William Frist, M.D., says that Terri Schiavo is aware and responsive, based on his viewing of an edited videotape made by her parents. Frist's pronouncement is an egregious breach of medical ethics, and I am surprised there has not been much more public condemnation from his physician colleagues.

Frist is saying that the dozens of neurologists who have examined Terri Schiavo, including the ones who have been taking care of her, who have testified under oath in the course of 19 separate court hearings, are all either incompetent, or are part of a conspiracy, of unspecified motives, to murder her using a campaign of lies. But of course, that is essentially the position of all of the members of Congress, GW Bush, and the legions of the holy who are demanding that government compel her doctors to keep her heart beating.

In this case, the next of kin wishes to end futile treatment, so the law is clear enough, though other family members refuse to believe the physicians' conclusions. But in other cases, such as a recent one in Boston in which a woman with ALS, completely paralyzed and unable to communicate, was kept "alive" in Massachusetts General Hospital at her daughter's insistence for many years. Her physicians went to court to try to get a court order allowing them to terminate life support; eventually the parties reached a settlement.

The fact is that the medical institution -- which is the sociologists' name for all of the people, organizations, roles and norms which deliver medical services in this country -- has evolved some practices and rules regarding the end of life, with involvement of the courts and some legislative participation but far less public discussion and debate than was necessary. The result is the Schiavo mess, which proves that a significant part of the public does not understand and is not comfortable with the regime of law and practice which has emerged.

I believe Terri Schiavo's doctors even if Bill Frist does not, and I believe that Michael Schiavo is doing the right thing. But that is beside the point. It is natural for people to want to believe that their loved one is responding to them and is not really gone. And it is easy for them to interpret her random and reflexive movements as somehow meaningful. The state of being awake yet unaware is entirely unfamiliar, and just does not seem plausible to them. But it is plausible if you know something about the architecture of the brain and how different parts of the brain are associated with different components of human behavior and experience.

According to radiologic findings, Terri Schiavo's cerebral cortex has disintegrated. That means she cannot possibly have any cognitive ability, understanding of her surroundings, or conscious awareness, at least not as humans ordinarily experience it. But other parts of her brain can still keep her breathing, make her eyes move, cause her to grimace. Does it really make sense that she smiles because she is feeling some sort of bliss, given her condition? Of course not, but her parents desperately wish to believe otherwise.

So I understand at least part of what is troubling to some people. They are very uncomfortable depending on a new priestly caste, people with medical degrees who have been admitted to what is to them, largely secret knowledge and assigned special titles and powers, to make ultimate decisions. They don't want to be told that their child's or their parent's or their spouse's situation is hopeless, they don't want someone to perform mysterious rituals and then tell them that the end has come when they are still capable of believing otherwise.

And perhaps there is a slippery slope here. Actually we may already have fallen down it a long way. The physicians' expertise is real, but our bodies and our lives still belong to ourselves. If we are powerless, we expect our close kin and loved ones to stand up for us, even if remote and august personages in white jackets are declaring us beyond help. At the same time, the physicians' expertise is a resource, a source of power for us in making, hopefully, the right decision. How can we democratize that resource, coopt the power for ourselves and our loved ones, without destroying it? After all, the whole point is, they know more than we do. That's why we pay them.

Dying for Pfizer

Last week's New England Journal of Medicine has three research reports on COX-2 inhibitors, all of which find that they approximately double the risk of heart attacks and strokes, and editorials on the subject by God-Editor Jeffrey Drazen and by Susan Okie. This story has gotten plenty of coverage in the corporate media, (and it's been a bit of an obssession here as well) but there's full tale hasn't been heard by most people.

The FDA first approved COX-2 inhibitors in 1999, at a time when there was in fact no evidence that they offered any benefits over aspirin. Remember that the idea was that they would do the work of aspirin-like drugs (called NSAIDS) without the risk of gastrointestinal side effects. In 2000, two studies came out on the long-term safety of COX-2 inhibitors, one of which showed benefit while the other did not. But the one that showed benefit also showed an increased risk of heart attacks compared with people who took an NSAID. But no trials had been designed to look for adverse effects of these drugs -- obviously. The drug companies pay for the studies, and they were interested in getting the drugs approved and on the market. Instead of following up on the question of cardiovascular risk, the companies started testing the drugs for new uses -- prevention of colon cancer, and management of postoperative pain.

Meanwhile, the companies -- Merck and Pfizer -- launched an advertising blitz. We all remember the buff old folks winning the ballroom dancing competition and practicing their martial arts technique. They sold more than $5 billion worth of COX-2 inhibitors every year for the next five years. Then, in late 2004, Merck noticed that people in an ongoing clinical trials who were taking Vioxx were having about twice as many heart attacks and strokes as the control group. It took an independent review panel to tell Pfizer that it's Celebrex was doing the same thing. Both companies fought to keep the drugs on the market, and won, but they were forced to stop the advertising.

Where was the FDA in all this? The FDA's drug approval process is paid for by the drug companies. It is focused on getting drugs approved and on the market, not on protecting the public. FDA scientist David J. Graham told a Senate hearing in November that the FDA was incapable of protecting the public. When he confirmed that Vioxx increases the risk of heart attacks, his superiors ordered him to change his conclusions, which were "inconsistent with the FDA's position on the drug's safety."

He refused. He went public.

The lesson? Science works, the truth is out there. But people, motivated by greed, will lie. And if you're feeling too stiff to play golf or clean the house today, take two aspirin.

God and Mammon

Thanks to those who have responded to my question below, and I'm still interested in hearing more of your thoughts on this.

I still have a hard time understanding how so much of the spiritual fervor of a large segment of American Christians has gotten channeled into such idiocy -- here are some snips from the CBS news coverage of the Schiavo affair:

Outside the hospice - where scores of demonstrators supporting Schiavo's parents have maintained a steady vigil - there was a shout of joy when news of the House bill's passage came. Among those cheering was David Bayly, 45, of Toledo, Ohio: "I'm overjoyed to see the vote and see Terri's life extended by whatever amount God gives her."

snip

A crowd of about 50 people prayed and sang outside the hospice. One man played "Amazing Grace" on a trumpet, as a pickup truck pulled a trailer bearing 10-foot-high replicas of the stone Ten Commandments tablets and a huge working version of the Liberty Bell.

The most interesting part, however, is the advertising that appeared with this story on the CBS web site:

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These people actually paid CBS to make sure their ads would appear with the story. Now I'm starting to remember something very important about the Christian right: it's big business. Pat Robertson, Jerry Falwell, and innumerable of their buddies are fabulously wealthy. The Left Behind books are the biggest thing in publishing. Mel Gibson made a fortune off of his sadistic snuff film. Throughout the country, "Christian" cable television stations consist of nothing but fundraisers, 24/7, and the cash flows in like rivers, and the lucre like a mighty stream. The preachers drive Cadillacs and wear thousand dollar shoes, while the poor saps who pay for it all are darning their socks and eating hamburger helper.

The alliance of the Republican Party with the Christian right is just part of its alliance with big business. It's all the same. Sell 'em sugar water and fat fried in trans-fat for food, sell 'em fear and sleaze for entertainment, sell 'em empty spectacle and lies for news, sell 'em superstition and hatred for religion. The profits are what matters, so long as a tithe goes to the Party.

Down from the mountain . . .

I've been up in my cave contemplating the ultimate, now I return to the world of humans to find that this Terry Schiavo thing has become inexpressibly disgusting. I must now resort to asking my readers for help. I have some theories about what is really going on here but I'm failing to convince even myself.

Of course the Republicans in Congress are using the issue to favorably impress the right-wing evangelical Christians who are a key constituency. They are mostly hypocrites and some of them may even feel a little bit guilty about what they are doing. No, I take that back. But what is baffling is why tens of millions of Americans now interpret Christianity as calling for society to expend vast resources, without any consideration of limit, on preserving the metabolism of entities that possess human DNA but not human minds. I see photographs of them prostrate with emotion, weeping and shouting, their earthly vessels nearly shattered by the power of the spirit that possesses them, as they make this demand on all of us. In their view, it is never time to die, and this state of affairs they call Human Life -- a cramped, impoverished, vacuous interpretation of what it means to be human -- is as sacred as their angry, vengeful, intolerant God.

Yet they care not one whit that millions of poor, vulnerable, people -- children most numerous among them -- die every single year who would have full lives, full capacities, meaningful futures, if these holy and compassionate people would just spend two dollars on them. In fact, they cheer lustily as their tax dollars are used to drop bombs on living, healthy human beings. Where do these people find their belefs? Obviously not anywhere in the Bible, where modern medical technology is not contemplated. Until the latter part of the last century, people in Terry Schiavo's condition would all have died within a few days, there would be no possibility of keeping them in a quasi-living state for 15 years. That seemed okay with God up until recently. What is making these people think as they do? Somebody help me.

Waxing Philosophical

Or maybe just waxing my moustache.

Here at Stayin’ Alive, we’ve talked about science, ethics and politics. I realize from my spirited, profound and sometimes mildly painful discussions with the crowd in the blogroll (look down and to the left), that I’m going to have to take some time to put them all together. What seest the cold, unflinching Cervantean eye when turned upon the philosophy, ethics and politics of science?

Too much for one day, or one post, to be sure, but for starters, I’ll offer a credo. There are different categories of questions, different kinds of things about which people may have beliefs. Etymologically, “science” is derived from a word simply meaning knowledge, or wisdom, but in modern parlance it has a narrower meaning. Capital “S” Science is an enterprise based on the metaphysical position that the truth is out there – that people find themselves in a universe which they can successfully explore and come to understand through the application of their senses and their reason. Scientific knowledge as such, in the strictest sense, is not controversial among scientists, but that is not to say that there are not many scientific controversies, often very bitter. So that is one of the most important distinctions that I wish to clarify.

I will talk another time about exactly how it is that we distinguish among what we know, what we think probable or possible, and what is utterly mysterious. And I will talk about what it means to know something. Right now, I will jump to another crucial point. What we know or might be able to know scientifically is not all that humans have to talk about. Knowing something about what is does not in itself answer questions about what ought to be or what people in general or someone in particular ought to do. Science can contribute to those questions by providing a factual basis on which to argue them: whatever our ethical principles, we can’t apply them unless we accurately understand the situations under consideration. One of the important tools of science, logic, can also be applied to ethical discourse, but that doesn’t make ethics a branch of natural science. Science also does not settle questions about aesthetics or artistic talent, which depend on the responses of our individual and variable minds to particular stimuli, and about which we can therefore disagree without any logical contradiction.

Since ethics and meaning come from somewhere outside of Science, Science is vulnerable to criticisms about how it should be conducted, and is open to debate about what we ought to make of the results. To take a concrete example from this site, drug companies invest billions of dollars to develop slight variations on existing drugs, at little or not real benefit to the public health, so that they can maintain their patents and protect their profits – which in turn is only possible because of aggressive and dishonest marketing of the new compounds. Those dollars might be much better spent on more innovative research, but investors don’t like the risk involved. Scientists who lend their talent and prestige to this enterprise, instead of doing work that would be of real benefit to the sick and suffering, are doing perfectly good science, but their lives are badly spent.

Even so, we now have these Cox-2 inhibitors. It turns out they increase the danger of heart attacks and strokes, and they relieve pain no better than aspirin. But, there are some people who can’t take aspirin-like drugs because they make their stomachs bleed. If they have arthritis, they might want to take Cox-2 inhibitors in spite of the risk. Scientists are the people who debate whether these drugs should still be allowed on the market, what should be on the label and package insert, whether and how they should be advertised, and how physicians should be guided in prescribing them (or not). But those really are not scientific questions. The scientific facts about the drugs must be properly understood for those discussions to happen appropriately, but the answers depend on our values, in complex ways. (I.e., it’s not just about how we evaluate risk, but how we feel about liberty, paternalism, the obligations of physicians, etc.)

And then there is Terry Schiavo. There are Scientific Facts about her condition, which some people prefer not to believe. But even if everyone did accept the same reality, they might still disagree about what ought to be done.

The Dialogue blog is where I get to talk about what all this has to do with metaphysical questions such as God. Here, I just want everyone to keep the issues straight: What is, what ought to be, what it all means. Related, but distinct.

Gonzales? Bolton? WOLFOWITZ?

Upcoming Bush appointments:

Secretary of Education: Paris Hilton

Presidential Science Advisor: Jerry Falwell

SEC Commissioner: Bernard Ebbers

Secretary of the Army: Lynndie England

Chair, Equal Employment Opportunity Commission: David Duke

Chair, Federal Communications Commission: Rupert Murdoch

Director, Office of National Drug Control Policy: Rush Limbaugh

Undersecretary of State for Human Rights: Saddam Hussein (hey, all he needs to do is say he's born again and the slate is clean!)

Remember, you read it here first.

What we have here is a failure to communicate

My friend with the missing ascending colon (let's call him Ernie) has another problem. His father (Bert) recently had both knees replaced, and he had a tough time recovering from the surgery. He became delirious (he has some dementia), and he had a mysterious fever. They did a CT scan of his head to see if he might have had some new stroke damage (a small but distinct risk from surgery), and they did a chest scan to look for pneumonia.

Ernie was in the hospital room with his mother Phyllis while Bert was raving and trying to yank out his IVs. As might be expected, she was freaking out pretty well herself. A new kind of doctor -- a "hospitalist," who only takes care of people while they are in the joint -- came in. After wrestling with Bert for a while and finally shooting him up with enough Atavan to knock him into next week, the doctor told Ernie and Phyllis that the chest scan showed a lesion on his lung and lesions on his adrenals that looked like metastases. This information registered on Phyllis like a production of King Lear in Albanian. Ernie went down the hall with the hospitalist and they agreed that Phyllis was in no shape to digest this information. "There's no hurry," said doctor Incognito, "you can deal with it after things have settled down."

Ernie later mentioned this to his siblings. His brother called Phyllis, and she spoke with Bert's primary care doctor, who told her he'd looked at the scan and there was nothing to worry about. Ernie could tell from the way the story came back to him that the doctor was talking about the head scan only. How could an internist decide that the radiologist's report was wrong anyway? Finally, at his sister's urging, Ernie called the doctor. Thanks to HIPAA (see my post of July, 2006, in other words I'll get around to it eventually), the doctor didn't call Ernie back, but called Phyllis, who called Ernie to ask why he'd called the doctor, and Ernie told her, who called the doctor again, who finally called Ernie. The doctor had never heard of the chest scan before, but he had immediately accessed the radiologist's report over the Internet (and believe it or not, the radiologist had been in Australia in the first place!) and now he was, in technical terminology, ape shit. He had already scheduled a PET scan and a visit with an oncologist. He was mostly concerned with figuring out who to blame so he wouldn't get sued.

We still don't know whether Bert has metastatic lung cancer, or whether the two months delay in finding it would have made any difference at all. But we do know that failure to get information from point A to point B is a very common problem in medicine and an important cause of medical errors. Despite the movement toward managed care and the important role of the primary care physician in coordinating services, the medical system is inexorably growing more fragmented as technical specialization increases. In the old system, doctors had "admitting privileges" in hospitals and attended their own patients there. No more. And oh yeah, your radiologist is in Australia -- unless you're in Australia, in which case she's probably in Yemen.

Who Are You? (doot doot, doot doooooooo)

One of the biggest challenges we have when it comes to eliminating health disparities is understanding just who the heck it is who suffers from them. We know that socioeconomic status -- income, education, job status -- has a lot to do with health, and we also know that disparities by race and ethnicity remain even when we control for SES. There is a major problem, however, with this "race" and ethnicity concept.

I'm sure that readers have picked up from the zeitgeist, even if they haven't come across the specific history, that in the U.S. there is an official system of racial classification. It was actually promulgated by the Office of Management and Budget in 1997 as the Revised Minimum Standards for Classification of Race and Ethnicity, and became binding on all federal agencies as of January 1, 2003. It replaced an earlier standard called Statistical Policy Directive 15.

First, people are classified by the so-called "ethnicity" question, which is simply, "Are you of Hispanic origin?" Then they are classified by "race," and we all have exactly five choices: White; Black or African-American; American Indian or Alaska Native; Native Hawaiian or other Pacific Islander; and Asian. More specific designations are allowed, but must "roll up" into these categories.

CDC has proposed a standard scheme for racial/ethnic identification consistent with these standards. The system attempts to map various nationalities onto "races." For example, certain African nationalities are listed as sub-races of "Black," European countries as "white" sub-races, and various Middle Eastern countries including Iran, Egypt and Israel as sub-races of a separate white sub-category. Filipinos are a sub-category of "Asian" race. Many nationalities, such as Brazilians and South Africans, are omitted, perhaps because it is obvious that they can't be plausibly mapped onto a "race." Two sub-national groups -- Scots and Assyrians -- are also included as "white" sub-races. Under "Hispanic" ethnicity is a list of predominantly Spanish-speaking countries of the Americas, regions of Spain, and Basques.

This, to put it in technical terms, is completely nuts. Race is a discredited concept with no biological basis. It is a social construct which continues to be important as a source of discrimination and historical inequity, but it does not map onto nationality. Nor does it make any sense, for any purpose, to organize people according to a multilevel racial system in which Arabs, Israelis and Iranians are sub-sets of a "white" race while Pakistanis are sub-sets of an "Asian" race that includes Filipinos (who live on islands in the Pacific and whose native language, Tagalog, is related to Polynesian languages) and Japanese. People who happen to come from predominantly Spanish speaking countries are not the only people on earth who possess ethnicity, nor is there any particular ethnic commonality between Catalonians and Mayans, both of which are "Hispanic" according to the CIPHER scheme.

Among the bizarre features of this procrustean system:

• Pashtuns who happen to be in Afghanistan are white. If they step across the border into Pakistan, they are instantly transformed into Asians.
• People who write "Dominican" in the "race" field are automatically classified as Black. I once had a Chinese-Dominican Research Assistant whose last African ancestor probably lived about 300,000 years ago.
• "Black" and "African-American" are used interchangeably. This habit once caused the New York Times to proclaim that every heavyweight boxing champion since Sonny Liston has been African American. Former World Champion Lennox Lewis is a subject of Her Royal Highness Elizabeth II.

I could go on. Come to think of it I will. The "Hispanic" category is a label imposed by the dominant, anglophone culture on people from many countries who didn't become "Hispanic" until they set foot in the USA. If you look separately at the health status of Mexicans and Puerto Ricans, you will immediately discover that they are as different as "Black" and "White" populations. "Asian" is a completely meaningless category in terms of language, culture, history of immigration, social status, and health status. In some data systems, people are allowed to pick from a limited menu of subsets of Hispanic and Asian, but numbers are usually reported with these subsets conflated. Arrrgh.

There is a very simple solution. Everybody, not just "Hispanics," regardless of "race," should have access to the full menu of ethnicities. Ethnicities should not be conceived of as subsets of races. You can pick Xhosa, or Ibo if you like, or South African or Nigerian, if that's how you prefer to identify yourself. Pick a race if you want to. The ethnicities can be aggregated for analytic purposes in whatever way makes sense for the question you are studying.

Done.

Well duhhhh. . .

From the Commonwealth Fund:

March 10, 2005—The Medicaid spending reductions included in the House and Senate budget resolutions are likely to weaken health care coverage for low-income Americans and increase the ranks of the uninsured, according to two reports released Thursday by the Center on Budget and Policy Priorities.

Read all about it

The Real Malpractice Crisis

When he isn't out trying to destroy Social Security or conquer the world for the God of Leviticus, the Leader of the Free World has found time to try to solve a crisis nearly as grave as the crisis facing Social Security, the Medical Malpractice Crisis. It seems that premiums for certain specialties have gone up recently and this is annoying all those obstetricians who aren't able to practice their love, as Mr. Bush so memorably put it, on the women of their communities. As usual, the solution proposed by the Resident is completely unrelated to the problem. He wants to put a low limit on punitive damages in medical malpractice suits.

Blogging works best when it's short and pithy, but life is complicated sometimes. To make a very long story short, the volume of malpractice suits and the size of jury awards has not increased in recent years. Premiums have gone up because insurance companies lost money on their investments. The real problem with medical malpractice is that it does not effectively further important public goals: improving the quality and safety of medical care, and assuring that people who are harmed by medical intervention or failure to intervene appropriately are compensated and taken care of. Far from an epidemic of "frivolous" lawsuits, we have a system that gives no recourse at all to most injured people. Frivolous lawsuits don't make it to a jury at all, that's what judges are for.

The problem is that malpractice law only compensates people for injuries caused by negligence or malice on the part of physicians. Medical errors kill tens of thousands of people every year and seriously injure untold numbers, probably in the seven figures. But that doesn't mean all thsoe doctors were negligent or incompetent. Medicine is complicated and inherently risky. There are risks associated with every sort of intervention, which can only be weighed against the potential benefits, which involves value judgments as much as it does math. Sometimes you're on the losing end of the risk equation, but it isn't anybody's fault. And sometimes doctors make mistakes, because they are human. A doctor who makes a mistake in a situation of complexity and uncertainty, who is not impaired, who is paying attention, and who is trying to do what's right for a patient, is not negligent, and in principle at least cannot be successfully sued, although in these situations obviously we encounter situations of moral and legal ambiguity that in our system, we ask a jury to resolve. What's wrong with that?

The main thing that's wrong is that there are millions of people who have been disabled or disfigured, lost years of work or education, lost loved ones, had their entire lives deflected into caring for a permanently disabled child or spouse, who get exactly nothing -- zero, zip, nada, bupkis -- because the medical error or the acknowledged risk that caused the injury was not negligent and did not constitute malpractice. That doesn't mean it wasn't preventable, however, or that people could not have done better. Meanwhile, the threat of a malpractice suit causes doctors and institutions to behave furtively and defensively when mistakes and injuries occur, instead of dealing with the facts openly and making an effort to learn from tragedies and improve systems to make tragedies less likely.

A good friend of mine entered the hospital through the ER some years ago, with symptoms of acute appendicitis. He was diagnosed with exactly that based on a clinical examination. (Actually, he had to endure a parade of residents and medical students sticking their fingers up his ass before the Chief Resident was prepared to give him the news.) They told him he would have his appendix out. 8 hours after entering surgery, he awoke dehydrated and in agony, minus half of his colon. The surgeons had seen a mass on his colon which they assumed was cancer and performed surgery for colon cancer. The mass was a diverticulum, which could have been excised in a relatively minor procedure. He spent almost two weeks in the hospital, lost a semester of graduate school and most of six months worth of income, had post-surgical complications including a month-long bout with pneumonia, and ultimately was left with symptoms of irritable bowel syndrome which will be life long. And oh yeah-- the hospital sent him a bill for $25,000 in excess of what his insurance would pay. Several different lawyers told him not to bother even thinking about suing. Many people with far worse injuries are in the same situation.

The malpractice crisis isn't about greedy lawyers. When people win large malpractice awards, it's because their doctors were negligent or incompetent and the people were severely injured. Fortunately, that doesn't happen very often. Unfortunately, injuries caused by medical intervention happen a lot. The crisis is about a system that is not designed to produce either justice, or public welfare, or better medical practice. But that is much too complicated for our politicians and corporate media to even discuss.

FDA Wins Major Award!

While the nation's most notorious drug dealers -- you know, Pfizer, Merck, GlaxoSmithKline, and the rest of the gangs -- were meeting in Boston to give themselves prizes for the best Direct to Consumer Advertising, my friends at Community Catalyst and Health Care for All were down the hall giving out their own awards.

The FDA got the "Asleep at the Wheel" prize, although personally I think that gives them too much credit. They aren't negligent, they're co-conspirators.

The judges couldn't decide on the "Performance Anxiety Award," so it was shared by Pfizer, Lilly, and GlaxoSmithKline for their competing stiffening agents. Merck and Pfizer also shared the "Speak No Evil" award for their Cox-2 inhibitors.

For more on the Bitter Pill awards, plus lots more, you can visit Community Catalyst. Check it out, lots of good stuff.

What we don't know can sure as hell hurt somebody

It's hard to keep up with all the outrages these days, but some of the world's leading public health experts have reminded us of one of the biggest. The U.S. and the U.K., occupying powers in Iraq, have made it clear that they have no interest in counting the civilians who have died as a result of the invasion of Iraq -- not even the ones shot dead or blown up by British and American troops.

Klim McPherson, currently at Oxford University, is first signatory. Writing in the British Medical Journal, he says:

Counting the dead is intrinsic to civilised society. Understanding the causes of death is a core public health responsibility. The government's white paper on public health emphasises the vital role of assessing the impact on health of all public policy. This is well recognised, and yet neither the public nor public health professionals are able to obtain reliable and officially endorsed information about the extent of civilian deaths attributable to the allied invasion of Iraq. Estimates vary between tens and hundreds of thousands. . . .The policy being assessed—the allied invasion of Iraq—was justified largely on grounds of democratic supremacy. Voters in the countries that initiated the war, and others—not least in Iraq itself—are denied a reliable evaluation of a key indicator of the success of that policy. This is unacceptable. Instead the UK government's policy was first not to count at all, and then to rely publicly on extremely limited data available from the Iraqi Ministry of Health. This follows US government policy; famously encapsulated by General Tommy Franks of the US Central Command "We don't do body counts." Its inadequacy was emphasised after the publication of a representative household survey that estimated 100 000 excess deaths since the 2003 invasion. The government rejected this survey and its estimates as unreliable; in part absurdly because statistical extrapolation from samples was thought invalid. Imprecise they are, but to a known extent. These are unique estimates from a dispassionate survey conducted in the most dangerous of epidemiological conditions. Hence the estimates, as far as they can go, are unlikely to be biased, even allowing for the reinstatement of Falluja. To confuse imprecision with bias is unjustified.

The full text of the statement, whose signatories also include Victor Sidel, founder of Physicians for Social Responsibility, may be found here. I have nothing to add except that this situation tells us all we need to know about the "moral values" of our current leadership.

Flying Under the Radar

One of the toughest challenges for the resistance to the invasion of the moneysnatchers is that the sheer overwhelming scope and scale of the current assault against the American people makes it almost impossible to pay attention to much of what the moneysnatchers are doing. While we are preoccupied with defending social security and plotting revenge on Joe Lieberman for the bankruptcy bill, they're plotting to get away with murder on the next block.

The administration proposes capping federal funding for costs incurred by states for Medicaid administration, which would reduce federal spending by $1.13 billion over five years. That sounds fairly innocuous, but Jane Perkins of the National Health Law Program points out that federal matching funds for administration pay from 75% to 90% of such costs as:

1. Medical interpreter services for people with limited English;
2. Sign language interpretation for the deaf;
3. Family planning services (90% federally funded);
4. Nursing home preadmission screening and resident review to assure that people are appopriately placed and receiving appopriate treatment;
5. Due process and complaint resolution systems for people denied care;
6. Outreach activities;
7. Case management for people with chronic diseases;

and much, much more that makes the state systems more efficient, fights fraud, assures that people receive the benefits they are entitled to, and that they receive appropriate care.

This is back room policy wonkery that won't sell newspapers or attract eyeballs to the talking heads, but that's where a lot of the most egregious money snatching is happening.

Outrage of the Day

Executive Order 13166, promulgated back in 2000 by the only national leader in history to have been impeached over fellatio (a far more important high crime and misdemeanor than lying to the world in order to start a war), "is designed to improve access to federally conducted programs and activities and programs and activities of recipients of Federal funding for persons, who as a result of national origin, are limited in their English proficiency (LEP). The Order requires each Federal Agency providing federal financial assistance to publish guidance explaining federal-funds recipients’ obligations under Title VI regulations and to describe the steps recipients may take to satisfy these obligations. The Order also requires Federal Agencies to develop a plan to ensure appropriate LEP access to their own federally conducted programs and activities." (U.S. Dept. of Justice, Office of Civil Rights, Exec. Order 13166 ~ Limited English Proficiency Resource Document: Tips and Tools from the Field, Sept. 2004. This is really just an order calling for enforcement of Title VI of the Civil Rights Act of 1964, which prohibits discrimination based on national origin.

Comes now Rep. Pete King, R-NY:



With a bill in Congress, "To provide that Executive Order 13166 ... is null and void and shall have no force or effect. . . .No funds appropriate pursuant to any provision of law may be used to promulgate or enforce any executive order that creates an entitlement to services provided in any language other than English."

Rep. King is as handsome as his politics, don't you think?

And Whaddyaknow?

Just in time for my previous posting, old friend David Satcher comes into town from the farm to affirm that "Wide health care differences persist between the nation's black and white populations despite civil rights improvements in many other areas," as the Associated Press tells us. Satcher's article is in Health Affairs, along with a lot of other material on the subject. I'm going to read the new Health Affairs and let y'all know what they have to say. You can go there and at least see the free stuff -- click the side bar link.

The Disparities Thing

Believe it or not, it is an official national goal of the United States to eliminate racial and ethnic disparities in health by the Year 2010. Of course, that goal was established under the Clinton Administration, but it has not been repudiated. We have less than five years left, so we need to get cracking.

Hmm. Maybe we aren't going to make it after all. That would require, you know, actually doing something. Most disparities in health -- by which we mean life expectancy, disability-free life years, self-assessed good health, freedom from pain, any number of measures -- result from disparities in life circumstances, including wealth, income, amount of education (somehow it makes us healthier), quality of work (i.e., having control, authority, and intrinsic rewards), quality of community (as measured through various concepts of "social capital"), quality of the physical environment (not living next door to a lead smelter, for example). The present administration, aided and abetted by the Republican-controlled Congress, is on a concerted campaign to increase social inequality in the United States, on every one of these dimensions, and the result will, inevitably, be an increase in health disparities.

A part of the disparities story, however, is health care. Medical intervention is not the most important factor in determining health, but it does matter -- considerably more now than it did when Ivan Illich wrote Medical Nemesis. Too much and the wrong medical intervention are still bad, and they still happen. But the right amount of the right stuff is of major value -- and it's also a public good, i.e. when one person is healthier, the rest of society benefits. (See January archived post "Consumer Driven Health Care and other fantasies.")

Unfortunately, not being an Anglophone European-American -- or a White non-Hispanic as the Census Bureau would have it -- is an independent risk factor for getting inferior medical care, even after we correct for having insurance. We know less about this than we should, but the existence of such disparities is proven. Don't take it from me, take it from the Institute of Medicine.

I'll have more to say about this soon.

"Public Health Week" topic for the year is aging

I'm just a fountain of news and links today. From the American Public Health Association:

The Administration on Aging has joined with the American Public Health Association as a partner in National Public Health Week 2005, April 4 – 10, 2005. We invite and encourage members of the National Aging Services Network to promote the week as a way to reach older adults and family caregivers about opportunities to take the preventive actions necessary to keep aging Americans strong and healthy throughout their later years. . .

The materials for NPHW 2005 are now available at http://www.nphw.org/. As a grassroots campaign, APHA invites you to join National Public Health Week as a state, local, or national Partner.

So if you're interested in either the info or the activism, go ahead and check it out. (No endorsement is implied.)

Info from Families USA

Families USA Conference Call
Medicaid: What Does Congress' Budget Hold?
Friday, March 11, 2005
4:00 PM Eastern Time

This week, both the House and the Senate will release their proposed budget resolutions, which are very likely to include huge cuts to Medicaid. Please join Families USA's staff this Friday, March 11, to discuss what is in these budgets and what immediate strategies advocates might use as the action moves to the floors of the House and Senate.

To RSVP for the call, click here.

We'll send out the call-in number this Thursday, March 10.

Global health equity

The new British Medical Journal is well worth a visit ( BMJ ), several interesting pieces including more on M.D.'s downplaying risk in communicating with patients, a comparison of the U.S. and U.K. health systems, health inequities in the UK, etc.

Of particular interest is an essay by Ronald Labonte, Ted Schrecker and Amit Sen Gupta on A global health equity agenda for the G8 summit. As this site has reiterated frequently, we are nowhere close to achieving the UN's millenium development goals, and in fact, as Labonte et al tell us, in many parts of the world we're headed in the wrong direction.

A few highlights:

1. Developmental aid for health is less than a third of the minimum need of $27 billion. [Sounds like a lot, huh? A couple of months worth of Iraq war.]
   
2. Education, nutrition, food safety, water, housing -- those are the most important determinants of health. G8 aid is grossly insufficient and usually requires projects to pay for themselves in the marketplace, which means they are less likely to benefit the poorest people.
   
3. Debt cancellation. Need I say more?
   
4. Fair trade. The U.S. administration preaches free trade but doesn't practice it, subsidising U.S. agriculture and putting up barriers to products from poor countries.
   
5. Establish a global human right to basic needs.
   

Read it quick, it goes subscription only in a few days.

Medicaid 101

I've tried to give a short crash course in Medicaid here, not necessarily to immense popular acclaim. Folks at the Commonwealth Fund also feel the need for the people to know, so here are a few facts to know and tell:

Commonwealth Fund newsletter

Here's how it starts:

Oh, the inscrutable Medicaid program. Governors look at it, and don't understand. The public hears passing mention of it in the news, and gets the wrong idea. Rugged individualists think they can bring it to heel, and it jumps up and bites them. Politicians think they can ignore it, but find it bleeds profusely when cut. As congressional debate over the program's future heats up, politicians, the public, the press and even policy wonks and providers are all getting a crash course in the mysteries of Medicaid and its unsuspected role undergirding the entire U.S. health care system.

CBOs, Public Health, and American Society

Sorry for the light posting of late, travel really takes it out of me. Anyway, back in the Hub of the Universe, I've come away from Atlanta with pretty much the same things I take from all the federal grantee meetings I attend -- five or six a year, at least.

We take it for granted, but it's actually notable that in the U.S., the federal government directly provides very little in the way of public health services. Funding from the relevant agencies -- the Centers for Disease Control and Prevention, Substance Abuse and Mental Health Services Administration, Health Resources and Services Administration being the most important -- goes to the states, to municipalities (mostly big cities) and to private grantees and contractors. Private grantees include large medical centers, but they also include thousands of small Community Based Organizations (CBOs, in the acronymic world of government). CBOs receive funding directly from federal agencies, and also are the ultimate recipients of a substantial portion of the federal funds awarded to states and cities.

There are some excellent reasons for this policy. Much of public health practice is by far the most effective when it is carried out by organizations indigenous to the affected communities -- organizations that are trusted, that employ people who come from the communities they serve, that understand the culture, the social structures, the social geography of communities. The grantee meetings are extraordinary experiences. I have never been a part of anything comparable to these gatherings, of people of every imaginable ethnicity, straight, gay, lesbian, transgender, Ph.D.'s and M.D.'s mingling as equals with peer counselors who might have graduated from high school. In the kind of work I do we quickly come to accept these experiences as ordinary, just the nature of our business. But of course they aren't.

The federal funding for CBOs accomplishes a great deal more than just purchasing services that benefit the public. Federal and state funding are the lifeblood for minority CBOs, particularly in newcomer communities that lack other infrastructure. They become essential advocates for their communities, providers of job opportunities, training and career ladders, institutions where public officials can identify community leaders and spokespeople to help connect communities with government and knit our multicultural society together. The federal government, to its credit, has not only purchased services from innumerable small, often struggling minority CBOs, it has invested in their capacity through technical assistance, training, and organization building.

The Bush administration's proposed cuts in spending on public health don't just threaten to make us all sick; they strike at an important part of the very fabric of society. With state budgets also having shrunk in recent years, CBOs have fallen on hard times. Many have laid people off, some have disappeared. If Congress goes along with budget cuts to the federal agencies that support healthy communities, the private organizations that are essential to the structure of those commmunities, and that make them effective partners in a multicultural nation, will be devastated.

Addiction

TV crime dramas, a category which includes your nightly news, are full of images of drug addicts. They're always getting smacked down by your favorite detective hero as criminals or witnesses to the depredations of fellow low lifes. Your elected officials, vying every 2 years or four years to outdo each other in getting tough on crime, have filled the jails at your expense (about $35,000/year per guest of the state) with drug addicts. Eighty percent of the people in prison and jail have one or another form of substance abuse problem, and most of them are guilty only of drug related crimes or of non-violent property crimes related to their circumstances as addicts. BTW, the psychoactive chemical most frequently associated with violent crimes is alcohol, which is a drug, but is legal.

A conventional, politician's analysis of the problem of addiction is that there are bad chemicals out there, which tempt morally weak people to consume them, plunging them into a life of depravity. It's actually considerably more complicated.

People have used "drugs" -- including opium, marijuana, alcohol, cocaine and hallucinogens -- for thousands of years, probably longer than that but the historical and archaeological record won't take us back much more than 10,000 years on this particular subject. For the most part, these substances have not constituted serious social problems. Some of them definitely do today, and we have also invented some new drugs which can be problematic. But the problems are not because the chemicals are evil, or because the people who become addicted are depraved. This is a long story which is probably not blogworthy, at least not in one piece.

But I'll begin with one important point: many people use drugs with the potential to be addictive, but only a minority become addicted. Some chemicals have a higher potential for addiction than others, although it can be difficult to sort out the properties of the chemicals themselves from the contexts in which they tend to appear. But people who have a reason to get up on Monday morning and accomplish tasks that require sobriety are at much less risk of addiction than those who do not. Conversely, people who suffer from trauma, depression, or serious personality disorders or psychoses are at high risk for addiction. Both of these statements remain true regardless of which chemicals the people try at one time or another.

One more important point to start with: the majority of the negative social consequences resulting from drugs of abuse result directly from the legal prohibition of those substances. If possession of certain drugs was not a crime, there would instantly be half as many criminals in the United States. Let's take it from there.

Invasion of Privacy

One of the difficulties with HIV prevention, as I have suggested below, is that it is essential to talk with people about very private matters that most of us do not like to discuss with strangers. It is necessary to ask them to reveal things about themselves that much of society considers shameful, and condemns -- reasons why schoolchildren beat up their classmates and stuff them upside down in garbage cans, reasons why preachers declare that they are damned to eternal torture at the hands of Almight God (the compassionate, the merciful), reasons why they may be fired from jobs, incarcerated, or murdered.

What is more, in order for epidemiologists to understand the course of the epidemic, for program managers to allocate funding, for supervisors to know if their efforts are working, all of this information has to be written down and analyzed, which today means entered into computers. In order to really make sense of it, we need to have some way of keeping track of individuals as they move through programs and from service to service. If this is to work, it requires mutual trust, honesty, and absolute avoidance of any moral condemnation, which is the mortal enemy of humanity in the context of this epidemic. I don't know of anybody who wants to be a drug addict or a prostitute, or who chose to be homosexual. These are what people are. Addiction is ultimately self-destructive, and prostitution is not the most rewarding possible expression of sexuality. Homosexuality is just homosexuality. But casting any of these as moral issues only harms the people so condemned, the people doing the condemning, and the public health, which means the health of all of us and of society.

Unfortunately, many members of the Congress and many political appointees within the Department of Health and Human Services are committed to moral condemnation. They are trying to translate it into policy. This is as dangerous as war, as dangerous as environmental depradations, as dangerous as poverty and ignorance.